BREATHING COUNTRY The use of electronic patient records in medical research
TEACHER’S PACK
Theatre of Debate速
TABLE OF CONTENTS INTRODUCTION………………………………………………........……......……......... 1 PREPARATORY MATERIALS……………………………………………………… 2 Introduction…………………………………………………………………………………………………..……………………….. 3 Introduction to Breathing Country…………………………………………………….………………….. 3 Aims……………………………………………………………………………………………………………………… 3 Breathing Country in your school………………………………………………………………………….. 3 Sensitive issues…………………………………………….………………………………………………………. 3 Any questions……………………………………………………………………………………………………….. 4 Fast track……………………………………………………………………………………………..……………….. 4 What is the Electronic Patient Record Initiative?...............................................………………………. 5 Breathing Country: Characters……………………………………………………………………………………………….. 6 Breathing Country: Synopsis ………………………………………………………………………………………………….. 7 The Issues …………………………………………………………………………………………………………………………….. 10 Preparatory Lessons……………………………………………………………………………………………………………… 12 PREPARATORY LESSON 1: What does it mean?........................................................ 12 PREPARATORY LESSON 2: What do we feel?.........................………………………………..13 PREPARATORY LESSON 3: Sculpture…………………………………………………………………….. 14 PREPARATORY LESSON 4: What do we think?..........................................................15 PREPARATORY LESSON 5: I’d like to ask………………………………………………………………..17 Glossary ……………………………………………………………………………………………………………………………….. 18 Development of Breathing Country: Advisory Group Members ……………………………………………. 21 Development of Breathing Country: Transcript of Workshop Day…………………………………………. 22
POST SHOW DISCUSSION TRIGGERS…………………...................... 36 DISCUSSION TRIGGER 1: Does approaching someone to ask them to take part in research invade their privacy?.................................................................................................................. 37 DISCUSSION TRIGGER 2: Is the security of our medical history compromised by electronic patient records? ........................................................................................................................ 39 DISCUSSION TRIGGER 3: Do we have a responsibility to the NHS? ........................................... 40 DISCUSSION TRIGGER 4: Should we think more carefully about the information we share about ourselves?........................................................................................................................ 41 DISCUSSION TRIGGER 5: How do stigmas surrounding mental illness affect us?...................... 42
POST SHOW LESSON PLANS………………………………………………….. 44 LESSON 1: English KS4 - Looking at language………………………………………………………………………… 45 LESSON 2: P.S.H.E & Citizenship KS4 - Understanding panic attacks……………………………………… 48 LESSON 3: ICT KS4 - Privacy and security………………………………………………………………………………. 51 LESSON 4: Drama KS4 - Understanding characters………………………………………………………………. 55 LESSON 5: Science KS4 - Research task…………………………………………………………………………………. 58 LESSON 6: RS KS4 - Choosing to die………………………………………………………………………………………. 60
ARTICLES……………………………………………………………………………………..63 ARTICLE 1: An unhealthy invasion of privacy…………………………………………………………………………. 64 ARTICLE 2: Researchers are not a threat to NHS patient privacy…………………………………………… 66 ARTICLE 3: Panic attacks……………………………………………………………………………………………………….. 68 ARTICLE 4: Sample questionnaire ……………………………………………………………………………………...... 71 ARTICLE 5: Religion and suicide………………………………………………………………………………..……….…. 72
INTRODUCTION
INTRODUCTION BREATHING COUNTRY Welcome to the Breathing Country Teacher’s Pack. We hope you will find it full of useful content that will help you to make the most of Breathing Country in your school. With the intention of making this pack as easy as possible to use and navigate we have split it into 5 sections and the contents of each section are colour coded accordingly. It is not expected that everyone will read the whole pack and consequently we have created lesson plans that can be pulled out and used independently of the rest of the pack. The lessons themselves have been put together with KS4 students in mind; however they can be adapted to suit other groups. They are provided as a stimulus to help you to make the most of the play and we would encourage you to modify them according to your needs. The Preparatory section of this pack contains introductory information that will give you a background to the play. It also contains much of the information that was collated to develop the play. The lessons in this section are designed to help your students get to grips with some of the vocabulary and themes specific to this project. Whilst not essential to an understanding of the play, which can stand alone, we would encourage you to cover some of the topics to ensure that your students make the most of the live performance and subsequent debate. The Post Show Discussion Triggers are provided to help you facilitate in-class discussions after seeing the play. They are not lesson plans, but starting points for discussion that will help you and your students follow up the play and continue some of the debates that will inevitably follow the performance. The Post Show Lesson Plans are targeted at specific subject areas and are designed to link with specific areas of the curriculum. The curriculum links are clearly stated on the first page of each lesson. However, it is worth reading lesson plans that fall outside your specific subject as there is some overlap between the lessons and some may be suitable for more than one subject area. Finally the Articles are provided to support specific lesson plans – but may also be useful background reading when considering the themes of Breathing Country. We hope this pack suits your needs and would be grateful for any thoughts you might have that will help us develop these resources.
We look forward to debating with you! Y Touring Theatre Company 1
PREPARATORY MATERIALS
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INTRODUCTION
Introduction INTRODUCTION TO BREATHING COUNTRY Breathing Country explores the social, moral, scientific and political questions raised by the use of electronic patient records from general practice for medical research and is the eleventh in the Theatre of Debate® series of projects developed and produced by Y Touring. The project has been developed in partnership with the Royal Academy of Engineering and is supported by the Wellcome Trust. Janet
I’m a clinical psychiatrist – so if I’m seeing someone and I don’t have their record, I spend half their time trying to establish what’s wrong with them – and what if their account isn’t reliable? 5000 people die in the NHS every year because the people treating them don’t have the correct information.
AIMS The overall objectives of the programme (play, debate and educational resources) are, through theatre and debate, to: •
Encourage informed debate about the potential of using electronic patient records for research and the issues raised for individuals and society (including issues such as trust, privacy and consent)
•
Clarify what the misunderstandings are and provide engaging stimulus material to provoke discussion in order to gather both quantitative and qualitative data on the attitudes and concerns of the target audiences
•
Provide a starting point for learning about new developments in medicine and biology
BREATHNG COUNTRY IN YOUR SCHOOL The play will be followed by a workshop/debate involving the characters in which students will be able to clarify and deepen their understanding of the issues raised by the play. In addition to the suggested preparatory lessons we have provided a selection of cross curricular learning resources, which can be found at www.ytouring.org.uk SENSITIVE ISSUES Like any good drama, Breathing Country raises some challenging issues including depression, panic attacks and suicide. When discussing the play, after the students have seen it, it is important to ensure that there is respect and trust within the group to enable open discussion. It is advisable to set clear ground rules with the students before discussion. The ground rules should focus upon listening and respect for differences in opinion.
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ANY QUESTIONS If you have any questions after reading through the information, please don’t hesitate to contact Y Touring Theatre Company. Tel: +44 (0)207 520 3090 Email: info@ytouring.org.uk Web: www.ytouring.org.uk FAST TRACK If you are short on time, we suggest that you prioritise the ‘What Does it Mean?’ and the ‘What Do We Think? activities, as they offer the most direct way to prepare your students for the play. In order to prepare yourself we suggest you familiarise yourself with the synopsis, the debate and the two newspaper articles (Articles 1 and 2) containing opposing viewpoints on the introduction of electronic patient records.
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ELECTRONIC PATIENT RECORDS
What is the Electronic Patient Record Initiative? ELECTRONIC PATIENT RECORD The NHS National Programme for IT (NPfIT) is an initiative by the Department of Health in England to move the National Health Service (NHS) towards a single, centrally-mandated electronic care record for patients and to connect 30,000 General Practitioners to 300 hospitals, providing secure and audited access to these records by authorised health professionals. The Department of Health agency NHS Connecting for Health (NHS CFH) is responsible for delivering this programme. In due course it is planned that patients will also have access to their records online through a service called Health Space. NPfIT is said by the NHS CFH agency to be "the world's biggest civil information technology programme". Richard
The NHS deals with 1 million patients every 36 hours. That’s 463 people a minute, or eight people a second. As we record these encounters, the most astonishing picture will begin to emerge – of vital importance to the way we research the incidence and treatment of diseases, for determining how we manage our service, and to ensure the care of our patients themselves. Ladies and Gentleman, the new NHS database, the Electronic Patient Record, will harness the incredible power of our greatest untapped resource – information. The largest such resource in the world, the Electronic Patient Record provides us with the most fascinatingly detailed picture of a country anyone has every seen…. Just think what we can learn about ourselves!
Janet
Imagine I’m unconscious and turn up in A&E and I’m allergic to antibiotics but because no one knows that they treat me with penicillin. With these records the people treating me will be able to determine my details very quickly, and potentially save my life. 5000 people die in the NHS every year because the people treating them don’t have the correct information.
The use of electronic patient records for research is a multifaceted and complex topic. The potential benefits for health are clearly evident as patient information can be used to identify disease causes, for the control of epidemics, to monitor drug effectiveness and provide better services. However there are various issues related to the use of such data for both society and the individual, including privacy, consent, access and data security.
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CHARACTERS
Breathing Country: Characters CHARACTERS Lizzie
Sixteen-year-old Lizzie suffers, like her mother, with depression. She is a gentle, private and sensitive girl who is learning to live with panic attacks and coming to terms with the death of her mother.
Simon
Seventeen. In love with Lizzie but uncertain of their relationship. He is confident, sparky and a digital junkie (twitter, facebook, googlemaps). He has a charm and charisma about him and is completely open; he has no secrets.
Richard
Forty-five. The Director of Communications at the Department of Health, he is also Lizzie's father. His high powered job means he has little time for his daughter. He is a brash, confident and sometimes aggressive businessman. Nonetheless, beneath his hard exterior he has a sensitivity that he finds difficult to express.
Janet
Forty. Works for the NHS. She is a passionate and gifted consultant psychiatrist/researcher and supports the introduction of the Electronic Patient Record to help her in her work. She is very honest and takes her work extremely seriously but is under enormous pressure and as a result can be scatty.
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SYNOPSIS
Breathing Country: Synopsis SYNOPSIS
After six months hiding from the world, Lizzie (17), is ready for Life again. Six months ago, following the mysterious death of her mother, she pulled all information off her Facebook profile, and ceased all communication. She could not bear the world asking about her. But this morning is different. She switches on her machine and searches for Life. She realises that she wants to Live again. Technophile Simon shares everything on the internet. Lizzie’s sudden withdrawal from cyberspace left him bereft, and he has been gazing at Lizzie’s profile, waiting for a change. But today something is different – she has sent him a message: Lizzie is ready. Meanwhile, Lizzie’s father, Richard, unable to cope with the bitterness and anger surrounding his wife’s death, has become trapped by grief. Boiling in silence, he is unable to relate to his daughter, and has thrown himself into his work. Richard is Communications Director at the Department of Health, and is trying to launch the NHS Electronic Patient Record – the biggest computer engineering project in the world. In the past, he was famous for knowing how the public want to ‘feel’ about such great endeavours, but since his wife’s death he has lost his gift he doesn’t know how to tell the ‘story’ to the public. And he has a new problem – a journalist has obtained leaked information suggesting the database is not ready to handle sensitive patient information… Richard is shocked by Lizzie’s sudden positivity, when she comes to find him at his office, and he wonders what has happened inside her. Pushing Lizzie away, he meets Janet, a gifted but fluster-brained clinical psychiatrist who has been campaigning for the introduction of the database. It becomes plain that Richard hasn’t been taking the privacy issues about the database seriously – he doesn’t know what privacy ‘feels like’. But when Janet tells him about a research study she is conducting, he goes pale… Later that evening, Lizzie meets Simon, and he is joyous when she promises to attend a friend’s house-party for her ‘relaunch’. But there is an elephant in the room – and Simon is hurt by her secrecy about the past six months. In a strange moment of tenderness, Lizzie takes a photograph of them together for him to share on his page. But then Richard arrives back home early. Furious that Lizzie appears to be cultivating a ‘secret life’ of her own when she should be churning with bitter grief, an outburst sends a distraught Lizzie scattering away. On the verge of 7
throwing Simon out, Richard hesitates when Simon gives him a brilliant lead for the database story. Later, Lizzie returns to her profile page, and witnesses a frenzy of comments over the freshly uploaded picture of her with Simon. Unable to cope with this sudden exposure, she suffers from a panic attack. A week later, Richard successfully launches the database, and Simon and Lizzie are preparing to go to the party. Lizzie struggles between her desire to go, and her belief that she will have an attack when she gets there. Simon tries to comfort her, but wishes she would tell him how he could help. The party is a great success, and Lizzie returns home drunk on life. But when she wakes up, Richard is waiting for her. He had been fretting that she had abandoned him. Moreover, a letter from the NHS has arrived for her, and Richard is paranoid that it is about him. But when Lizzie reads the letter, she is shocked. It asks her if she consents to being contacted about taking part in a research study led by Dr Janet Greig, concerning the mental health of young people. She has been identified because her medical record showed she had reported suffering attacks. As a result of what she regards as an abuse of her privacy, she has a severe attack. The next day, she goes to accost Janet at the hospital, in defence of her privacy. Janet, at heart a good clinician, is horrified that Lizzie has been hurt by the use of her data in this way, but can also see that Lizzie desperately needs professional help. Talking to Lizzie, she gives Lizzie a glimpse of a future without these attacks – if she were to undergo some Cognitive Behavioural Therapy. Lizzie, seeing a way out, begins to open up a little about the circumstances of her mother’s death. They arrange another appointment. Since the party, Simon has been unable to contact Lizzie, while Richard has concluded that he must do something to avert a disaster with his daughter. Fretful that she may be at risk to herself, Richard suggests to Lizzie that they take a short break to talk about things. But Lizzie responds that she ‘can’t do Mondays’, but won’t say why. When Richard wonders aloud whether Lizzie might be ‘like her mother’, Lizzie bursts out into the night. Richard contacts Simon over Facebook and asks him if he can find out where Lizzie is going. Simon can’t resist such a data search, and the next day follows Lizzie to the hospital, from where he reports to Richard. In despair, Richard lashes out at Simon, and orders him off – he doesn’t want his daughter anywhere near a dirty snoop. 8
Inside the hospital, Lizzie is meeting Janet. Having established trust, and privacy – breathing country - Lizzie finally opens up about her mother’s suicide, and begins a healing process. But this involves data entry about Lizzie onto a computer. Janet may well be a gifted clinician, but she does not understand the technology, and is so overworked that she leaves her computer terminal vulnerable to furious, confused snoopers who may be loitering around the hospital, looking for answers. Richard, meanwhile, frantically tries to locate Lizzie, convinced she is in danger of committing suicide. Finally getting in touch, he asks her to come and visit him at work. As Lizzie travels to Richard, Simon contrives to bump into Lizzie. Now aware and sensitive to her condition, he is still hurt – and when Lizzie promises she will tell him everything this evening – after she has gone to see her father – she does not understand the dread filling Simon’s heart – if only he’d waited a day, he wouldn’t have had to spy on her – and now her father will tell her he followed her! How can he stop her from finding out about his spywork? And so it proves. All this time, Richard has been unable to empathise with his daughter – and now – in a panic – he demands that Lizzie ‘come clean’ about her trip to the hospital. Discovering she has been spied on, she is crushed, and has a final, serious attack, in which she passes out. While she is unconscious, Simon bursts into the office, intent on preventing Lizzie from knowing about his treachery. When Lizzie, wakes up, a showdown ensues in which Lizzie tells Simon she never wants to see him again. Furious now at what he sees as his mistreatment, Simon vows revenge as he leaves. Meanwhile, in the face of Richard’s emotional dysfunction, Lizzie threatens to ‘expose’ him – to tell everyone what happened to his wife. Although he has ‘nothing to hide’, now he knows what the need for privacy ‘feels like’. Later that day, Janet finds that the memory stick is missing from her computer… All hell is about to break loose… Ben Musgrave Summer 2009
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THE ISSUES
The Issues THE ISSUES Janet
You can check your record, if you register. Or at least a summary. And you can read it in full under the data protection act. And if after I see you, you want to see what I put in your record, you can see that, too, unless there’s a very good reason not to. It’s your record. And if I enter something you think is wrong – then there are things we can do about that. And if there’s anything you want to hide from anybody – you can ‘seal’ it – put it in an envelope so nobody can see it.
Below is a list of some of the debates/discussions that arose in the research and development period for this project and are touched upon in the play. Should patients have access to their records? There are advantages and disadvantages to people accessing their own medical notes. They may give useful insights and can express their views, but may also find the information there unhelpful and difficult to understand. There are serious security issues associated with giving patients access to their records. Should making records accessible for research be opt-out or opt-in? Presumed consent will allow more records to be used for research, as few people will actively opt-out. The more complete the data the more meaningful the research. But is it an infringement of choice? Does collecting research data violate personal privacy? Misuse of personal data, such as the use of medical data without consent, is viewed as assault. Is this an accurate assessment? If so, are there ever circumstances where obtaining consent is not necessary? Is this still the case if the data is anonymised? Do users of the NHS have a duty to the service? One of the purposes of the NHS is research, and access to electronic data offers excellent research opportunities. Do people who benefit from NHS care have a right to opt-out of NHS research which could benefit others? Can we successfully restrict access to medical data? Our capacity to build secure systems that adequately protect people’s privacy is limited. The present system is already flawed, and in any security system, electronic or otherwise, the greatest threat comes from inside. Understanding the flaws in the design may help us plan for inevitable security breaches.
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Who else might use this data? Other parties might have interest in this data: the media, insurance companies, governments. Once the data exists and is collated we can never be certain of how it will be used. Should private benefit be sacrificed for the public good? Healthcare is a political subject and the debate can become polarised into left and right wing arguments. The decisions made now may reflect the current political climate, but will have consequences far into the future. Will fears over privacy cause a backlash or prevent patients using the NHS? Public scares and a backlash against the new system could make people unwilling to access healthcare, create a society where the rich can afford to opt-out or cause serious damage to confidence and trust in the welfare system. Richard
12 billion for a few bits and bobs – Doctors and nurses lives made a bit easier! The appointment system made a bit easier! A bit safer in A&E! A bit easier to do medical research! People aren’t interested in four things getting a bit easier, Barry, they want to be told a story they can understand! They want to know how it will FEEL.
You may also wish to refer to Articles 1 and 2 at the back of this pack. The articles feature two very different viewpoints and touching on the bigger questions relating to privacy, trust, and the common good.
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PROCESS
OBJECTIVE
PREPARATORY LESSON 1: What does it mean? A discussion exercise to ensure that your students are familiar with the key terms and phrases referred to in the play.
1. Explain that you are going to say a word or phrase and that when you call out their name, you want each of your students to say the first word that comes into their head. 2. Explain that if they can’t think of a word or if their mind goes blank, they can say ‘Pass’.
WORDS AND PHRASES
3. After each round clarify the actual meaning of the word or phrase if appropriate and discuss as a class some of the associations that have been shared.
Trust
Engineer
Patient confidentiality
Private
Database
Suicide
Medical research
Anonymised data
Panic attack
Social networking
Electronic patient records
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OBJECTIVE
To explore the emotions associated with some of the key phrases associated with electronic patient records.
PROCESS
PREPARATORY LESSON 2: What do we feel?
1. Explain that you are going to say a word or phrase and that when you call out their name, you want each of your students to say the emotion that they associate with that word. 2. Explain that if they can’t think of a word or if their mind goes blank, they can say ‘Pass’.
WORDS AND PHRASES
3. Discuss as a class some of the associations that have been shared.
Depression
Data breach
Panic attack
Medicine
Government
Doctor
Identity fraud
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OBJECTIVE
A large empty classroom or drama studio
PROCESS
To enable a non-verbal student exploration of pre-conceptions about electronic patient records.
RESOURCES
PREPARATORY LESSON 3: Sculpture
1. Split the class into groups of three - A, B and C (the odd group of four is fine). 2. A’s, are the sculptor, B and C (+ D’s if required) are the sculptor’s ‘clay’. Ask the sculptor to guide the clay into a picture that you will describe.
SCULPTURES
3. After each one, invite the whole group to look at each other’s sculptures and comment on what they see. Sculpture One: Privacy Sculpture Two: Surveillance Sculpture Three: Anxiety Sculpture Four: Trust Sculpture Five: Depression
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OBJECTIVE
A large empty classroom or drama studio
PROCESS
To prepare your students for the debate that will follow the play. The debate will explore what your students think about electronic patient records.
RESOURCES
PREPARATORY LESSON 4: What do we think?
1. Ask your students to stand in the centre of the space. 2. Explain that there is an imaginary line running down the centre of the space, one end of the line represents ‘Agree’ and the opposite end of the line represents ‘Disagree’. The middle of the line is ‘Don’t Know’. 3. Explain that you are going to read out a series of statements. If they agree with the statement they should go and stand at the end of the line that is ‘Agree’. If they disagree they should go and stand at the end of the line that is ‘Disagree’. If they are not sure or don’t know what they think they should stay in the middle. 4. After they have taken up their positions, ask your students to explain why they have chosen their position. After hearing from several students give your group the opportunity of changing their position.
STATEMENTS
5. Repeat the process for each statement. 1. I'm happy for absolutely anyone to know all the details of my medical history 2. I want to have control over who knows the details of my medical history 3. I'm happy to let my doctor decide who knows the details of my medical history 4. I trust all medical researchers to keep my data confidential 5. I’d want to know if my data was used in a scientific paper
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6. I'm happy to reveal my medical history if it could help someone else get better treatment 7. I'm happy to reveal my medical history if it could help a British company make money and create jobs. 8. I’d be happy for my data to be used to develop a new drug to treat cancer 9. I’d be happy for my data to be used to develop a more effective abortion pill 10. I’d want to know if my data showed I had a 50% chance of being affected by a particular disease 11. I’d want to know if my data showed I had a 50% chance of having a disabled child
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OBJECTIVE
Pen and paper
PROCESS
To prime students for the questions that they will have the opportunity to ask in the debate section of the production of Breathing Country.
RESOURCES
PREPARATORY LESSON 5: I’d like to ask
1. In pairs, ask the students to come up with two questions. Both are for people who have strong opinions on electronic patient records: •
Question 1 is for a medical researcher who thinks that patients' information should be used for medical research unless there is a specific reason not to.
•
Question 2 is for someone who thinks that the government will loose data from the electronic patient record and leave patients potentially open to identity fraud.
2. Ask the students to make a note of the questions and then share them with the class. They could also take the questions with them into play and ask them in the debate.
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GLOSSARY
Glossary GLOSSARY Anonymised Data Data prepared from personal data but from which the person cannot be identified by the recipient of the information. Data Breach
The unintentional release of secure information to an insecure environment. This may include incidents such as theft or loss of digital media such as computer tapes, hard drives, or laptop computers containing such media upon which such information is stored unencrypted, or posting such information on the world wide web or on a computer otherwise accessible from the Internet without proper information security precautions.
Depression
An illness that involves the body, mood, and thoughts, that affects the way a person eats and sleeps, the way one feels about oneself, and the way one thinks about things. A depressive disorder is not the same as a passing blue mood. It is not a sign of personal weakness or a condition that can be wished away. People with a depressive disease cannot merely "pull themselves together" and get better. Without treatment, symptoms can last for weeks, months, or years. Appropriate treatment, however, can help most people with depression.
Electronic Patient Records (EPR) An individual patient's medical record in digital format. Electronic patient record systems coordinate the storage and retrieval of individual records with the aid of computers. There are different types of electronic patient record. Summary Care Record (SCR), containing basic information. Local Detailed Care Records (DCRs), containing more comprehensive clinical information. Secondary Uses Service (SUS) which will provide access to aggregated data for management, research and other ‘secondary’ purposes. Epidemiology
Epidemiology is the study of factors affecting the health and illness of populations, and serves as the foundation and logic of interventions made in the interest of public health and preventive medicine. It is considered a cornerstone methodology of public health research, and is highly regarded in evidence-based medicine for identifying risk factors for disease and determining optimal treatment approaches to clinical practice. In the study of communicable and non-communicable diseases, 18
the work of epidemiologists ranges from outbreak investigation to study design, data collection and analysis including the development of statistical models to test hypotheses and the documentation of results for submission to peer-reviewed journals. Epidemiologists also study the interaction of diseases in a population, a condition known as a syndemic. Epidemiologists rely on a number of other scientific disciplines, such as biology (to better understand disease processes), Geographic Information Science (to store data and map disease patterns) and social science disciplines (to better understand proximate and distal risk factors). Facebook
Facebook is a social networking website. Users can join networks organised by city, workplace, school, and region to connect and interact with other people. People can also add friends and send them messages, and update their personal profiles to notify friends about themselves. The website's name stems from the colloquial name of a book given to incoming students at Facebook creator, Zuckerberg's, high school alma mater, Phillips Exeter Academy. The book shows the faces and names of the school's students and faculty.
Google Earth
Google Earth is a virtual globe, map and geographic information program that was originally called Earth Viewer, and was created by Keyhole, Inc, a company acquired by Google in 2004. It maps the Earth by the superimposition of images obtained from satellite imagery, aerial photography and GIS 3D globe.
Google Street View Google Street View is a feature of Google Maps and Google Earth that provides for many streets in the world 360째 horizontal and 290째 vertical panoramic views from a row of positions along the street (one in every 10 or 20 meters, or so), from a height of about 2.5 meters. It was launched on 25th May 2007 and has gradually expanded to include more cities, and in these cities, more streets and also some rural areas. NPfIT
The NHS National Programme for IT (NPfIT), is an initiative by the Department of Health in England to move the National Health Service (NHS) towards a single, centrally-mandated electronic care record for patients and to connect 30,000 General Practitioners to 300 hospitals, providing secure and audited access to these records by authorised health professionals. The Department of Health agency NHS Connecting for Health (NHS CFH) is responsible for delivering this programme. 19
In due course it is planned that patients will also have access to their records online through a service called Health Space. NPfIT is said by the NHS CFH agency to be "the world's biggest civil information technology programme". Online Social Networking A social network service focuses on building online communities of people who share interests and/or activities, or who are interested in exploring the interests and activities of others. Most social network services are web based and provide a variety of ways for users to interact, such as e-mail and instant messaging services. Social networking has encouraged new ways to communicate and share information. Social networking websites are being used regularly by millions of people.
Panic attacks
Panic attacks are sudden, discrete periods of intense anxiety, fear and discomfort. The onset of these episodes is typically abrupt, and may have no obvious triggers. Although these episodes may appear random, they are a subset of an evolutionary response commonly referred to as fight or flight that occur out of context. This response floods the body with hormones, particularly epinephrine (adrenaline), that aid in defending itself from harm. Experiencing a panic attack is said to be one of the most intensely frightening, upsetting and uncomfortable experiences of a person's life.
Twitter is a free social networking and micro-blogging service that enables its users to send and read messages known as tweets. Tweets are text-based posts of up to 140 characters displayed on the author's profile page and delivered to the author's subscribers who are known as followers. Senders can restrict delivery to those in their circle of friends or, by default, allow open access. Users can send and receive tweets via the Twitter website, Short Message Service (SMS) or external applications. While the service costs nothing to use, accessing it through SMS may incur phone service provider fees. Since its creation in 2006 by Jack Dorsey, Twitter has gained notability and popularity worldwide.
Sources http://www.encyclopedia.com http://encarta.msn.com/ http://en.wikipedia.org http://www.bbc.co.uk http://www.bris.ac.uk/secretary/dataprotection/research/anonymising.html www.publications.parliament.uk/pa/cm200607/cmselect/cmhealth/422/422.pdf http://www.medterms.com
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ACTIVITY
Development of Breathing Country: Advisory Group Members ADVISORY GROUP MEMBERS The process of creating Breathing Country relied upon the input of an Advisory Group of experts with a range of different viewpoints on the issue of electronic patient databases: Gus Hosein Visiting Fellow, London School of Economics Martyn Thomas FREng Director and Principal Consultant, Martyn Thomas Associates. Prof. Simon Wessely MD FMedSci Professor of Epidemiological and Liaison Psychiatry at the Institute of Psychiatry, King’s College London, and Honorary Consultant Psychiatrist at King’s and Maudsley Hospitals Dr Marlene Winfield OBE Head of Public Engagement for the National Programme for IT in the NHS Dr Trevor Yellen General Practitioner, Killick Street Community Health Centre, Kings Cross At the start of the project these experts, along with young people from local schools, were invited to participate in a workshop exploring perceptions around the issues arising from the use of electronic patient records in medical research. For further information about the invited speakers, and film footage of their presentations, please see the resources page of Y Touring website: www.ytouring.org.uk
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ACTIVITY
Development of Breathing Country: Transcript of Workshop Day TRANSCRIPT OF WORKSHOP DAY Below is a summery of the opinions and presentations expressed during the Y Touring workshop day where writers, young people, patients and the advisory group talked about the issues surrounding electronic patient records. A GP’s Perspective Dr Trevor Yellon I have a few rather dry slides to talk around, but I would like to begin with a story. A 39 year old woman, a mother with two children and a journalist, went for a private, surgical procedure, and in the days following she became unwell. She saw a GP, who found that she had flu-like symptoms and thought little of it. He did not realise that he was the seventh GP to see her, not one of her doctors was aware of her appointments with the others. She became progressively unwell and died from septicaemia a few days later. The number of times someone requires medical help for a condition can be significant for their diagnosis, and had the doctors she saw been fully aware of the situation she may have been sent to hospital. There is now a big court case over her death. With that in mind, my personal perspective is that electronic patient records are a good thing. Currently notes are written on a computer and when they go to another GP the record is printed, a summary is typed up, it is sent by post and then filed. This process has many disadvantages. • • • • •
It is slow and laborious. Doctor’s handwriting is notoriously poor. The system leads to errors in the way notes are recorded. It is of no help to hospitals or A&E who do not have access to your records when they treat you. The records take up lots of space and are fiddly to use, which takes time out of each 10 minute consultation.
The new system will remove these problems but new problems will arise. There is a big worry about data security and viruses and we have all heard the stories of lost laptops and CDs with personal data on them. The system is very expensive, and the funds for it are coming from the Department of Health. Staff will need to be trained to use it, I’ll have to fire my note summariser and there are confidentiality issues connected with who has access to records, who can alter records, and the profiles of well-known people and celebrities. If I spend all day telling people not to smoke I might not want them to know about my 40-a-day habit. My personal opinion is that I’m asking not to have my notes uploaded to the database, but I am aware that the system is unsustainable as it is. Questions Workshop participant My trust, Chelsea and Westminster, has moved over to an electronic system for records and it’s a joy. It has revolutionised healthcare. Workshop participant I wondered how many cases would have benefited from multiple doctor consultations as in your story? Dr Yellon
Probably very few, this is a personal perspective.
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Workshop participant Are you more worried about who will access records or about restriction of access? Marlene Winfield
Most of the time it will work fine. People travel and people move, to have access you will have to justify it. The process of access is monitored. For example, A&E see many people and pass them on.
Workshop participant As someone who has been through 7 operations, I have taking to keeping my own medical records so that I am able to go to a doctor with a record of what has happened to me. I think that more patients should take responsibility for their own health in that way. Dr Yellon
We love patients like you, but you are 1 in 150. It sounds like and easy solution but it doesn’t work. Most people won’t take the time to record their own medical notes.
Workshop participant What if patients lie or altar things if they keep their own records? Dr Yellon
They do that at their own risk. People sometimes feel they should behave in a certain way to be believed. I see that every day. People with a cold will exaggerate their symptoms, some people dying of cancer will come in saying it's nothing much. It's part of an ethical view point, but I find that most people tell the truth most of the time.
Marlene Winfield
There is a movement for people to access their own records so that they can see if things are right or wrong, particularly in the case of chronic illness.
Dr Yellon
Sometimes patients can access their own records and add things, such as treatment preferences. I am uncomfortable with patients accessing their own records. Practice letters are now written so that they are directed at patients. I speak a medical language which it took time to learn, and which allows me to communicate information to my colleagues accurately. Translating this for patients takes time and makes it difficult to communicate between hospitals.
Workshop participant I wanted to say that I have been in a position to look up details of people I went to university with. The desire to look is very strong, and I’m a good person who wouldn’t do that! I think that especially with celebrities it would be difficult not to look. Workshop participant Wouldn’t it be possible to have a helpline set up so that clever people who were able to understand the medicine could tell the patients what their notes meant. Dr Yellon
Most illnesses do have support groups, but I can give
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you an example of the confusion caused. Sometimes pregnant women have a miscarriage, and in medical terms this is referred to as ‘abortion’. To a patient the term abortion means that they underwent a procedure to end the pregnancy. If they had a miscarriage and read the term abortion on their medical notes they may feel that the notes are wrong, when it is, in fact, just the medical term. Workshop participant It is better to share information with healthcare professionals in the case of long term conditions. Workshop participant There should be a system where these people with long term problems can upload information to their records. Workshop participant Who currently has access Pharmacists? Psychologists? Dr Yellon
to
the
records?
No-one has access without consent. Currently the patient has to give consent.
NHS Connecting 4 Health Dr Marlene Winfield OBE I have lived here for about 36 years, although you will be able to tell from my accent that I am not from this country. I’m a wife and mother of two grown up sons. I am the Director for Patients and Public at NHS Connecting 4 Health, which is that part of the NHS that gives people more access to their records and control over who has access. I am a former consumer advocate for the national consumer council where I worked on data protection and privacy, and have worked for pressure groups such as the Prison Reform Trust, so I am a bit of a poacher turned gamekeeper. I am interested in this topic because it is part of my job, but also because I’ve been a researcher and I’ve commissioned research on patients. I’ve benefited from research but I’ve also spoken to people who are worried about their data being used in research, and I’ve seen what happens when there is not enough research. I ran a support group for thousands of women who were injured by a faulty contraceptive, known as Dalkon Shield. Over 200,000 women worldwide were affected. They didn’t know how to protect themselves, their doctors and nurses were unable to give them good advice because there was no way to detect the pattern of things going wrong at an early stage. People have a lot to gain from the collection and analysis of patient data. They can know which treatments are best for which conditions and which patients, get early warnings of problems, and better understanding leads to better prevention. There is a downside – while the majority of people have little in their medical history that could harm them, some people have a lot to loose. There have been some shocking lapses in looking after data by both revenue and customs and the NHS. For some people a privacy breach can mean: • • • •
They can’t get a job Can’t get a mortgage or insurance policy Are singled out at school, home or community e.g. HIV Family might find out about issues such as contraception which could led to problems or even violence.
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There is no middle ground with the media – on Monday the Guardian front page showed concern over database security, on Wednesday they praised a research breakthrough. So is this play to be about Guardian Angels or Big Brother? The more we can do with the information the greater the conflict of interest. What is more important: private interest or public good? The more complete the data the better the research, so should people be allowed to opt out? Should people have more say over data that names them? Can they say they don’t want their data used in some kinds of research? Should the information people have chosen to hide be used? Who can look through the records to find those suitable? – Doctors and nurses have the right but not the time, researchers have the time but not the right. If the NHS has a duty to its patients, do those patients also have a duty to the NHS? Who should have the power to decide when public good should triumph public interest? The government? Parliament? The Department of Health? The medical establishment? The courts? The people themselves? Questions Workshop participant I’m a doctor by background, and have worked as a GP, in the RAF and in family planning. Our electronic patient record shows so much about us that I think it needs consent. To access it without consent is like data-rape. The public need to think about consent. Many people say they are happy for others to access their records, but we tell our doctors private things and don’t want that data shared. So the question is: how do we give consent? Marlene Winfield
We’re doing a public consultation. This is a complex set of records to flag to have them used in some research.
Workshop participant Which records are held in the doctor’s surgery and which are held nationally? Marlene Winfield
There are three types of records. The hope is that we will link GPs, hospitals and clinics so there is pooled information. To access the system you will need a smartcard. If you request emergency access to a patient you don’t normally see – say in A&E, you need to say why you need access, and the request will be sent off to a reviewer who decides to grant access or not, so the access is audited. The GP keeps a Summary Care Record and it will be possible to access this anywhere in England. You can write in there yourself, and you can have access to your own record so you can see things as they come in. I saw a man with diabetes yesterday who was recently given access to his record. Two weeks later he collapsed and went to hospital where his prescription was changed. This was immediately visible on his notes along with a record of his visit, discharge summary and other details. Patients and information are the most underused resource in the NHS. We currently can’t cope with the demands on the NHS. The patients should take responsibility but we need to give them the tools to do so.
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Workshop participant You talked about use of this information in terms of life insurance… Marlene Winfield
I was talking about if the information leaked. It is illegal to give information without consent.
Dr Yellon
That’s right, the insurance companies are allowed to ask if you have a condition, but they are not allowed to ask about any negative test results. They are only able to ask if you have an illness.
Workshop participant Have there already been similar systems to this elsewhere in the world? Simon Wessely
In Scandinavia you have a unique personal number which remains with you for life. They have the best epidemiological data in the world as a result. They do great twin studies which would not be possible elsewhere, and yet these are not countries with a reputation for poor civil liberties. The USA has a good, sophisticated system which covers many people. It meant that after hurricane Katrina devastated New Orleans many people could be easily found and helped. Those with paper records found their records were gone. We lag behind systems in some countries but are ahead of others.
Marlene Winfield
Notions of civil liberties vary. For example, in Sweden tax information is public, so you can find out what everyone earns.
Workshop participant I read that in France people own their own records… Marlene Winfield
I don’t know much about this. I think people have a health card which is under their personal control and they can chose to make that information available.
Nigel Townsend
I would like to ask our young researchers if they feel that they have different attitudes to privacy and data sharing from the adults here?
Workshop participant No, I don’t think so. I don’t think that we are any more happy to give away our rights and our information just because we are young. Workshop participant If the NHS is doing this can people who go private avoid it – so can people buy out of the system? Marlene Winfield
Provided that the clinics can meet NHS standards they can have access to records with patient consent. From a personal stand there are three levels of opting in. Red – These are shared records on local systems only. The national database cannot access them. Amber – This is the default setting and records are shared locally. Patient summary is shared nationally with consent. Green – This is a shared record where there is presumed consent for access controls, but not for
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research. It just means that someone from another health authority could access the file. Dr Yellon
If and when something goes wrong I’m concerned about patients not coming because they are confused.
Simon Wessely
Do you have any evidence that’s the case?
Dr Yellon
No, but I do know that what’s reported in the news directly impacts on my consultations.
Marlene Winfield
The opt out rate for the database in those asked is very low – 0.81%. We sent out letters to people and asked them whether they would like to opt out, then followed up to find out why they hadn’t responded. Most never opened the letter, but still we found that people generally were not bothered.
Workshop participant What happens if the patients move abroad? Marlene Winfield
The NHS keeps the records for a while – around 18 years I think, but it varies between regions, then they are destroyed. There are possibilities for moving records.
An Engineer’s View Martyn Thomas FREng I’m an engineer. I look at big systems. This is an example of a large sociotechnical system and it is important to get it right – the outcome of all the things we’ve been discussing about how people will need to use it – these things need to be right. There are the ethical issues of the balance of benefit and potential harm, and I’ve learned that it is a serious mistake not to get those issues right from the beginning. In this project we have a framework, but we still haven’t worked out the technical issues. ‘I wouldn’t have started from here’ is my position. Where there is a balance of benefit it shouldn’t be imposed. The future is built by engineers and we can only build the world that you want to live in if there is debate. So who debates? • usually the corporations • Governments, who often have no idea what the consequences of their policy will be. • The public – democracy is about informed debate. I now work as an expert witness, so I look at systems which fail. Computers world-wide are very incompetent, but haven’t been around for long. The first computer was built 60 years ago at the University of Manchester. So we are doing well – 60 years after the beginning of civil engineering we hadn’t even invented the brick! But still, most large-scale computer developments fail. Electronic patient records can be of benefit to patients, but there are better and cheaper ways to achieve those benefits than the £10bn that’s being spent on this system. Is this the best way of improving healthcare? The shared view is that privacy is important, and it is very hard to achieve that. A consequence of that is that if we give the patients access to their own records, security is certain to be compromised. We need to accept that it is inevitable and plan for it. We also need to be convinced that the benefits
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outweigh the risk. So here are the facts: Computer systems contain bugs and you cannot show that a system is secure by testing it. There are still errors. For example, the new Hercules Transporter Aircraft had 1 error per 5 lines of code. There are many ways of attacking a system that is connected to the internet. It is impossible to set up a cost-effective system online. Celebrities will have their data excluded. How famous will you have to be to be excluded from the database? If privacy matters to them why doesn’t it matter to you? Once your records are out they are there forever. The internet never forgets. Making systems secure means making them difficult to use. When Connecting 4 Health rolled out its smartcards the clinicians shared them immediately to avoid the time it takes to log in and go through the auditing procedure. All the research shows that people share these tools, just as in offices all around the country there are post-it-notes with passwords written on them attached to monitors. It is fanciful to suggest that you can keep a log of who accessed a system. People in the real world do not work that way. You can’t tell a doctor that sharing his smartcard with a colleague is unethical when he is getting faster treatment for someone who is bleeding to death. Testing can never make a system secure, and this is why: It is like testing 100 rivets on the Sydney Harbour Bridge at random, finding something wrong with 10 of them and changing those 10. Testing shows you that the tests work. In the physical world things behave in a continuous manner, but you cannot apply this to computers. They do not behave in a continuous way. They are a set of individual states and any one of them can be wrong. There are many ways of attacking a system: • • •
• • •
The easiest is from the inside. You can borrow a password, ID or smartcard You can guess or crack the password… or find it in a car park (as all the government gateway passwords were found on a disk) Obtain it through a phishing attack – these often install a Trojan or keylogger. The computer is then controlled by someone else, usually organised crime. Those who control it then use it to send spam, attack websites and attack databases Man in the middle attacks – feeds back an exchange of data to deal with encryption DNS data attack Social engineering – pretend you are entitled to access
In 1996 NHS staff were trained to look for bogus phone calls. They were told to use a phonebook to look up the number of the organisation the person said they were calling from, and call them back on that number, not the number the person gave them. They found that they were receiving around 30 bogus calls a week. There was another study where a false record of a celebrity (Bill Clinton) was added to record data to see how many staff would look, and dozens checked. The bottom line is that where there is money to be made from data people will get access.
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Your data may be wrong. There is a story of a woman called Helen Wilkinson who was an NHS manager. Her records said that she was an alcoholic. She tried to get her records changed but couldn’t, and eventually her case reached debate in the House of Commons. Even then, following the debate, it took her another two years to get the records changed. She went on to found The Big Opt Out. There are difficulties with large losses of data. One problem of electronic databases is the amount of data lost – the number of people involved. It is very difficult to make systems secure and to allow people to have access to one thing and not to others. The hidden information may be implied, for example, the drugs which are prescribed may make it very clear what you are being treated for. The specification for how many of these problems are to be overcome is complex – so much so that it is not enough to have a normal review process whereby people read through the spec. The proposed system and its security specification needs to be analysed mathematically. Anonymising data is not a one-step process. There is a need to correlate the data in order to answer research questions, and with multiple queries run on a subset of data it would be possible to identify an individual once the database exists. Ross Anderson at the University of Cambridge wrote extensively on this type of problem – the difficulty of keeping anonymised data useful. So, who trusts government departments to deliver this system securely? • • • •
Half of doctors won’t upload their data and 1/5 say that they intend to opt-out all their patients. Not politicians, they have stated they will opt out, and not celebrities. Not me. That leaves you. Shouldn’t you be more concerned about your privacy?
Questions Marlene Winfield
People can hide the medical data on their drugs. The clinician should discuss with their patient what needs to be hidden to make their records secure. We have actually found that there is about a 50% opt-out rate on the online forum, but these tend to be a small, self-selecting sample.
Martyn Thomas
Those who use online forums tend to be technologically informed people who are interested in healthcare, such as doctors. There was a more extensive survey on nhs.it.info.
Marlene Winfield
Doctors are worried about security but they are also concerned about sharing their power. There are many different options here.
Martyn Thomas
I agree, but we need to discuss the balance of benefit before this is rolled out. This could be done in a better, more engineering based way of building systems.
Workshop participant I feel no differently about my desire to use these records if 10 bn has already gone into this system. Can we stay with this system and address the issues you’ve raised or do we need to take a chance on it
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for the general good? Martyn Thomas
In my experience a one size fits all approach is always a serious error. There are lots of reasons to want electronic patient records available, and maybe they should be addressed separately. There has not yet been a robust cost / benefit analysis carried out for many of the issues here – for example, the GP feels his patients shouldn’t have access to their records.
Workshop participant Can this system be fixed? Martyn Thomas
The current NHS network is a private network, but the moment that you give access to patients over the internet you open it up and cause security problems.
Workshop participant But under the old system things got lost, many of the notes were never there. The new one is an improvement. Martyn Thomas
The thing with the old system is that it was difficult to loose 94,000,000 records at once. This problem is caused by aggregating the data. So if you loose many records does it really matter? Once privacy is lost you cannot retrieve it, and I don’t think we’ve undertaken the analysis to be able to reduce that risk.
Marlene Winfield
You can’t download multiple records from the NHS database.
Workshop participant Is it the size of the database that’s the problem? Martyn Thomas
It seems to me that the bulk of the benefit is from the transfer of data between clinicians and the national record. This could be handled without increasing the vulnerability much at all.
Martyn Thomas
Two suppliers have already left and the systems are having significant problems. I don’t believe that Connecting 4 Health have got to where they planned to be today, but I believe that they could have done. The issues are complex and the systems are already running.
A Medical Researcher’s View Professor Simon Wessely MD FMedSci I have been a medical researcher for the past 20 years, and would like to speak about this issue from the point of view of someone doing medical research. 20 years ago I went to stay with a famous American Professor of Psychiatry. It was at the start of glasnost and it was commonly believed in the USA that Russians were using the information on their psychiatric systems to lock up dissidents. The professor had asked to see the records of 2000 people who he believed may be detained in Russia, and after some searching he received 70% of the records he requested. He concluded that the other 30% must be falsely imprisoned. I was unable to tell him that where I worked, at the Maudsley, I would only ever find 70% of the records I searched for, and that
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was not because we falsely imprisoned people. The point is that there has never been a time when records have been sacrosanct. So if you are looking for medical notes under the current system where would you go? • • •
To medical records, where they have racks of paper records on shelves, and anyone could walk in To colleagues, who usually have piles of notes on their desks The point is that people could steal records if they wanted to
Clearly confidentiality is essential. It is a legal relationship whereby patients are able to tell their doctors intimate things, but patients do not tell their doctors everything. There are some things you do not want your doctor to know. Doctors sometimes breech confidentiality – sometimes they must. After you see a doctor a lot of people will know about your visit. If you break your leg and go to A&E at least 60 people will see your medical notes – doctors, nurses, people who take x-rays, pharmacists, people who write reports – they need to see your notes in order to do their jobs, and this is normal. There are advantages to the new system. For example, you can correct your notes. I used to work at Broadmoor, and the nurses there always sold stories to the tabloids. There was an agreement that the papers give a flat fee of £50 for stories, and it was common practice. At the Maudsley some people who use the services are well-known, and the greatest risk to security is known to come from people who are inside the system. They have publicly fired people, making high-profile examples of those who have breached confidentiality. With the new system those people now leave electronic traces on the records, and they can be found out. So how do we do research in the new environment? Well, the default position is consent. For most research you need to have consent to use a patient’s data. If you don’t have consent it is considered assault, and that is what it would be called in legal terms. Around 70% of research is carried out under consent. The rest of the studies proceed by anonymisation. For example, to pick up a problem with a drug using electronic records you only need to know the name of the drug and the effect you are looking for. For example, a particular drug – an antidepressant – led to an increased likelihood of people breaking their hips. So, to find out if this relationship exists you type in the name of the drug, the effect you are looking for, and see how many records come back. This approach is safer, quicker and more accurate than previous methods of research. The bigger sample size leads directly to improved care. In the NHS we often employ semi-anonymisation, where you could work out who the person is, but you would have to work hard to do it. Research is carried out under the principle of consent or anonymised. Under the current system you have no control over the use of your anonymised data, but I don’t believe that anonymised data counts as your data. Under some circumstances it is not possible or not desirable to obtain consent, and sometimes the research work can only be done that way. For example: There was a story in the press that if you had an abortion you were more likely to get breast cancer. Most people who have had abortions are unlikely to give consent or be willing to discuss it. These most likely to give consent would be those who had cancer. This would introduce bias into the results, and the research would be meaningless. So, in this case it is not
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possible to get consent. But there are registers for diseases such as cancers, and anyone who had breast cancer would be entered on the register. The data for the research could be taken directly from the register without consent, and it would only be possible to do the research in this way because if you went for consent the result would be wrong. I took part in a study where we looked at the health of veterans of the Gulf War. We needed to find veterans and wanted to take their blood and examine their immune systems. To do this you need consent. You would think that of all the groups in the country the easiest to find would be those in the army – but no. Soldiers tend to move around. When they leave the army they go onto the reserve liability, so that if there is another war they can be called up to fight. The top name given on the reserve list was ‘Mickey Mouse’, and 60% of the addresses on the reserve list proved to be false. Those who had left the army did not want to be traced so they could be called up to fight. So, we needed to find them but they are young men, and tend not to have GPs and to move around a lot. If they hear that someone is looking for them they tend to think it is child support and move. It took £2mn to find 2/3 of the veterans. In another study we were looking at the effects of depleted uranium and whether it causes cancer. People serving in the forces in Yugoslavia were exposed to depleted uranium and the research team needed to know if the veterans list matched the cancer registry. We could get consent, but we know that those who have cancer will be the easiest to trace, which will introduce bias, and that it costs £2 million to trace 2/3 of the veterans. With this in mind we decided to do the study without consent. This is not a straight forward process. • •
• •
Firstly, we needed to go to the MRC for a research grant. This process takes around one year. Then we needed ethical approval for the study. This needs to be given by each institution involved, so the ethics committee for the Maudsley is separate to the ethics committee at the Ministry of Defence. Then R&D approval needs to be given for every region where the soldiers are living. Once this approval has been granted another Department of Health committee needs to be consulted on the breech of confidentiality.
We are also – unable to upset anyone, bound by confidentiality outside the study, obliged to show that the research is in the public interest, obliged to show that the research cannot be done any other way. In England we couldn’t do the research, but in Scotland, under a different committee we could. We found no correlation between the serving in Yugoslavia and cancer, but only in Scotland. So: it is already the case that people know your medical history. You probably don’t know about all the people who look at your medical notes to check up on GPs. This already happens. For research the issue is very complicated. The NHS was established to both for care and for research. I believe it is a two way contract and that if you benefit from the NHS then you should participate in research. As far as patients are concerned, confidential data can be used, and I don’t think you should be concerned. Questions Workshop participant When people go on registers such as the cancer register should they give consent? Should they be
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asked? I feel it would help people to know that their data is being used for research, it would let them feel that they are doing good. Simon Wessely
The GMC guidelines are that people should be informed, but we know that when you have a consent system it tends to bias the data. It is generally the disadvantaged that don’t give consent, and these tend to be the people most at risk of disease. This well-documented and is known as the inverse care law. Most research and most care is focused on the people who need it least. So yes, people should be told, but it is an ‘opt out’ presumed consent system. Most people won’t take part, but far fewer will actively refuse. It is unrealistic to move to a complete consent or anonymise culture. Connecting 4 Health will not remove the current systems completely. But – you can now do lots of studies without ever dealing with confidentiality. For example, drug safety – with the new electronic records the thalidomide tragedy would never have happened. Currently drugs are tested in randomised controlled trials on 3-4,000 people. This will spot common side effects, but using the electronic data in research makes it possible to spot serious rare side effects.
Lesley Patterson (RAEng)If you have access to this data how powerful is it going to be? Simon Wessely
It has the potential to transform medical care – spotting patterns, sending reminders, giving guidelines to GPs – for example if they have entered those symptoms have they considered… Epidemiology is the big use, and this is commonplace in Nordic countries. Not in Iceland though, where they began to include genetic information on the database, leading to a public backlash. This data was also made available commercially. The public are very suspicious of industry and that was a move beyond altruism. The people were not happy with the move. The NHS do sell some data – they sell their prescribing data, and I feel that I don’t like that. I object to industry using my data.
Marlene Winfield
If they will pay the NHS for data there should be public debate on the subject.
Public Data and Security Gus Hosein Well, unlike the other speakers I’m not an expert on the NHS. The NHS is about welfare, and is more controversial to speak about healthcare than it is to speak about ID and security. Who here has a supermarket loyalty card? Most people allow supermarkets to collect data about them. There is a notion that if you will give away your personal information for loyalty points then you cannot care about your privacy. Who here uses social networking sites? Who uses Facebook? I’m particularly concerned with Facebook. There is a notion that if you are willing to give information away you don’t care. There is a reason that on Facebook when you add an application they always
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ask for your consent. The reason is that they screwed up badly last year with a file. They said that if you didn’t want things you could opt out, but now after consultation they have changed all the options to opt in. But you must know that Facebook doesn’t make its money from social networking – it makes it from targeted ads on their site. But what if Facebook gave your information to the government? What if they helped the government trace who your friends are? Would you feel violated? What if they sold to advertising? What if they sold to researchers who would analyse the data to search for paedophiles on the internet? I did some work with the UN, who approached me to look at their work in refugee camps and how information was collected. There is a database of refugees held by the UN which includes their medical records and data on whether they had been raped when they were examined. This is sensitive data, it shows, for example, whether their kids are their own. The genetic data is on the file. This information allows the UN to identify fraud in the refugee camps – they often have problems with people claiming for more children than they have to get more food and the UN need to distribute supplies fairly. The records let them sort out food and doctors, but there are problems with this database. The data often goes missing. Militant factions come into the camps and steal the computers. Some countries, such as the US, insist on seeing the data before people are given asylum, allowing them to choose, on the basis of sensitive, personal data, who they will have. Major decisions are made on the basis of this insecure data. The database could easily form a list of people to kill if it fell into the wrong hands – and it often does, but the UN will not ask for consent for inclusion on the database. They say it would be too difficult to explain the issues around consent to the refugees. In many ways what they are saying is that the refugees are too stupid to understand, and this means that the workers start to see these people as just sources of data. They are just numbers, which are shared and decisions made for their own good. Currently Microsoft and Google are both competing to get involved in supplying systems to deal with medical records. Microsoft know that they are hated and mistrusted, and it is remarkable to see how they are designing their systems carefully to ensure security and consent. The information that goes out to third parties has strict rules on how that information is used and stored. Why are we being so conservative? Do we think that people are too stupid to make decisions? Questions Martyn Thomas
The issue is that once the data is in someone else’s hand you’ve lost control of it. They can change their mind about how they use it. Governments can step in and take the data.
Gus Hosein
This is why I was impressed with Microsoft. I would like to point out that it was just nice to see their approach. I’m not here to advertise Microsoft. This is also why I used the Facebook example. I agree about the governments. Informed consent is a big issue, but it needs to be done without presuming everyone’s an idiot.
Martyn Thomas
Should it just be down to the person who wants your data? Other issues may come out.
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Workshop participant Scandinavia is an interesting example – they have a transparency law. Workshop participant From the Microsoft example – how often is information actually dropped if you opt out? Gus Hosein
That’s interesting. They often don’t shut down accounts. Many online companies don’t. E-bay changed their model and now when you delete an account they only keep the information as required by law. Facebook took a lot of persuading to delete accounts.
Workshop participant It seems there are some interesting issues about how consent is obtained.
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POST SHOW DISCUSSION TRIGGERS
36
SCRIPT
DISCUSSION TRIGGER 1: Does approaching someone to ask them to take part in research invade their privacy? Richard
There was a letter for you It’s from the NHS, so I nearly opened it But it was addressed to you.
Richard stands waiting for Lizzie to open it. Lizzie
I’ll read it alone
Beat. Richard remains She opens it. She stands to reads it. On the display, we can read what has been sent. Janet enters, and reads the letter, as Lizzie views it on the screen. Janet/Display DEAR MISS PEACE, AS YOU MAY BE AWARE, IN CERTAIN CIRCUMSTANCES, DATA HELD BY THE NHS CAN BE USED TO IDENTIFY PATIENTS WHO MAY BE INTERESTED IN TAKING PART IN RESEARCH. Richard
What is it?
Janet/ Display I AM CURRENTLY PLANNING A WIDE-RANGING STUDY THAT LOOKS INTO THE MENTAL HEALTH OF YOUNG PEOPLE. Lizzie sits down on the chair, as before, having an invisible panic attack Richard
Are you alright?
Janet/Display YOUR RECORD SHOWS THAT YOU HAVE BEEN TO A GP ABOUT FEELINGS OF ANXIETY AND DEPRESSION IN THE PAST 6 MONTHS. I AM WRITING TO ASK YOU IF YOU WOULD BE WILLING TO TALK TO US ABOUT YOUR CONDITION. Lizzie sits on her chair, her head down. Richard
Lizzie
Lizzie
I’m fine
Richard
Don’t hide all this from me
Lizzie
Not hiding anything
Beat. Richard exits.
37
COMMENT ISSUES/PROMPTS
In this scene Lizzie receives a letter from Janet, a researcher conducting a study on teenagers with anxiety and depression. The receipt of the letter causes Lizzie to feel her privacy has been violated and as a result she suffers a severe panic attack.
•
• •
•
Inviting patients to take part in research can have negative effects. It may bring up issues that were long since buried. Is it unethical to do so? Lizzie's father 'nearly' opened the letter. What are the risks associated with contacting patients by letter? Is consent required to ask for consent? In other words should patients be asked if they would be happy to be asked in the future to take part in a study? Should researchers have the right to contact patients directly or should contact be made by GPs?
38
SCRIPT
DISCUSSION TRIGGER 2: Is the security of our medical history compromised by EPR? Janet
Have you seen the way we keep health records at the moment? They look like… They look like this
She pulls a wodge of brown manila records from her bag.
ISSUES/PROMPTS
COMMENT
I actually shouldn’t be taking these home with me, it places these records at risk, but I work 14 hour days and sometimes a human being just needs to do their job. So I sort them out in bed.
Janet is frustrated by the difficulties presented by what she sees as a chaotic system for storing people's records. At this point in the play she views the new Electronic Patient Record as an essential development that will help her to do her job properly. But is an electronic system really more secure than a paper system?
•
•
•
Currently records are stored in a variety of ways: paper files, local databases or a combination of both. Janet complains that paper records are never 'where [she] needs them' and often get lost. Does the new system solve this security problem? Paper records do get lost, but it is difficult to loose many thousands in one go, as has happened with electronic records in other contexts. Does this mean EPR compromises our security? 'No system is 100 % secure'. If this is the case and EPR is the most efficient system then should we really be debating security?
39
SCRIPT
DISCUSSION TRIGGER 3: Do we have a responsibility to the NHS? Janet
But I think things will get lost, while there are people like me around, pushed for time, and targets everywhere, and sent into a panic by all this machinery… They gave me this data – and up to the point I had to use it – to put into a spreadsheet – to send you a letter – it was safe. But it was there. All in one place. I used to be the guardian of thousands of records But now I’m the weak point in the system –
ISSUES/PROMPTS
COMMENT
Still, it’ll be the failures that will be reported, that’s the way it is with the stupid media we have – But this system promises powerful benefits, and I think – even now – that it may be a risk worth taking With the data we had, we found out some amazing things Lizzie
In your study?
Janet
There are so many people suffering! And they all think they’re the only ones. They think, quite often – that what they have is something shameful – Something they shouldn’t talk about – But if only they did they’d realise How they’re not alone. Even if they never tell anyone, they’re not alone…
In the penultimate scene of the play Janet expresses deep regret at the loss of patients’ medical records. But she philosophises that perhaps the risk to security is a risk worth taking when one considers the incredible benefits that can come of research. Because of people like Lizzie agreeing to take part in a study Janet is able to find out 'some amazing things' that will help other sufferers.
•
• • •
Should private interest (the privacy of our medical history) be sacrificed for public good (the potential to discover new treatments etc)? Should we trust the NHS to use our records responsibly? Is the risk to the security of data really worth the potential outcomes? And what are these potential outcomes? As individual users of the NHS do we have a duty to take part in research that may help others? And should the NHS therefore have the right to use ALL data about its patients?
40
SCRIPT
DISCUSSION TRIGGER 4: Should we think more carefully about the information we share about ourselves? Lizzie returns to her laptop. She returns to Simon’s Facebook/Social Network profile. His status update reads: ‘I SHARE, THEREFORE I AM’. There he is. On the screen, she goes through pictures of Simon having fun in pubs and beaches and on trips to the country and at parties wearing conical hats. Lizzie looks at them in awe. Lizzie
So much life…
A notification pops up. ‘Simon has tagged a photo of you’. Troubled, she clicks through to the picture - it is the picture that she took of the two of them just a minute ago – the both of them smiling, looking happy. Lizzie
Oh god
ISSUES/PROMPTS
COMMENT
She refreshes. And all of a sudden people begin to comment on the picture. Slowly, at first – but as Lizzie begins to feel violated with greater and greater rapidity – a nightmare panicky binge of messages, that eventually exceed Facebook. These messages culminate in a messy screen-crash of text and binary-code-gobbledegook, as Lizzie, who cannot take anymore, panic attacks understatedly.
Lizzie is sent into panic by what she perceives as a gross invasion of her privacy. Simon's sharing of a single photograph and the subsequent comments from all of their friends reminds us how the internet has made possible a world of sharing that allows people to reach audiences of sizes only previously accessible to celebrities. Simon’s Facebook status is telling: 'I share, therefore I am' – a sort of motto for the way he lives. Simon is comfortable sharing all his personal details. But is a picture that features not only him, but Lizzie, really his to share? • • • • •
What are the dangers of sharing our details online? What happens if information falls into the wrong hands? Who owns information once it has been uploads onto sites like facebook? Information is copied all across the internet - is it really possible to remove something once it is posted? Do we have the right to share information that relates to other people?
41
SCRIPT
DISCUSSION TRIGGER 5: How do stigmas surrounding mental illness affect us? Lizzie
...And I thought I had some terrible thing Like diabetes or cancer or glandular fever. And I went to the doctor. I was so scared I had to lie down I thought I’d pass out just to tell him. And he said he said it was my brain doing that That it was stress and panic and anxiety doing that to me. And for you that probably sounds like the news would have been a relief… But for me it wasn’t Not a relief for me at all. And he said would you like to see a counsellor? I could prescribe you Cognitive Behavioural Therapy And I said ‘I’m not doing therapy, I’m not’ And he said: It’s not the kind of therapy where you lie on a couch and talk about your dreams And I said I don’t believe that therapy works And he said I don’t want to give you anti-depressants until you’ve tried therapy And I said I’m never taking anti-depressants, I’ll never do that. And then he asked me if there was any history of mental illness in my family… And I said…I said no. And he looked at my notes. And he wrote something in there – he wrote something – and I said – what are you writing in there? And then he asked me if I ever felt suicidal. At that moment I got up and ran out of the surgery. Sorry… I’m… I’m coming on again
42
COMMENT ISSUES/PROMPTS
Lizzie recounts the moment in which she was diagnosed as being mentally ill. She has great difficulty in coming to terms with the diagnosis, partly due to her fears of being 'like her mother', and also due to the stigmas attached to mental illness. She refuses treatment believing 'therapy doesn't work' again highlighting her failure to accept mental illness in the way that she would a physical one. Lizzie's desire to cover up her illness, which seems to have been triggered by her mother's death, is demonstrated in Simon's lies about her absence from school, '[I said] that you got glandular fever. That’s why you had to drop out the year'. It is also mirrored in Richard's cover up of his wife's death. • •
•
•
How do stigmas surrounding mental illness affect the way we thing about treatment? Do these stigmas compound the need for tight security on medical records? Would privacy fears be allayed if there were no stigmas attached to mental illnesses? Does the stigmatisation of mental illness potentially damage medical research by causing people to opt-out of being included in trials and studies? Think about how mental illness appears in the play. Does Breathing Country help in any way to dispel stereotypes and stigmas?
43
POST SHOW LESSON PLANS
44
LESSON 1: English KS4 AIM
To explore how language is used to communicate ideas.
OBJECTIVES
To identify examples of subjective and objective language. To understand the effect of bias in written communication. To explore different modes of communicating one idea. To write persuasively.
NATIONAL CURRICULUM LINKS
QCA GCSE Criteria: 3.1 - Focus on extended individual contributions, group discussion and interaction, and drama-focussed activities GSCE Specifications (across all boards) Speaking and Listening: - Explain, describe - Explore, analyse, imagine - Discuss, argue, persuade Writing: - Inform, explain, describe - Argue, persuade, advise - Analyse, review, comment
RESOURCES
Looking at language
Article 1: An unhealthy invasion of privacy Article 2 : Researchers are not a threat to NHS patient privacy
45
ACTIVITY
READ
Read aloud the following speech from Breathing Country. Richard stands as the screen behind changes and music indicates that he’s making a presentation. On the screen, a picture of the UK, and above it, a large NHS logo. And some calming classical music – Debussy, or something, Richard
So just imagine, on a huge screen, in a calm room, an image of Britain breathing. Sunrise – And somewhere in Staffordshire a baby is born. And somewhere in Cardiff a woman needs a new heart And somewhere in Bristol a donor has just died. And across the country, 10,000 people are trialling a new drug for Parkinson’s disease for the first time. We can see all this – unfold – right in front of us. All this information is coming in. All in one place – Almost as soon as it happens. And so we can connect the donor to the patient. And we can see how the new drug is boosting activity in the brains of those Parkinson’s sufferers, and upload fmri scans of blood flow in their brains. And share them with the specialists who need them at the push of a button. And with incredible accuracy – on a scale we’ve never managed before – we’ll chart in real-time the changes to the health of the nation. The NHS deals with 1 million patients every 36 hours. That’s eight people a second. As we record these encounters, the most astonishing picture will begin to emerge – of vital importance to the way we research and treat diseases. Ladies and Gentleman, the Electronic Patient Record will harness the incredible power of our greatest untapped resource – information. The largest IT project in the world, the Electronic Patient Record provides us with the most fascinatingly detailed picture of a country anyone has every seen…. Just think what we can learn about ourselves!
DISCUSS
How does the character, Richard, use language and rhetorical devices to communicate to his audience? Consider the dramatic structure of the speech. How does it make you feel? Does it cause you to feel enthusiastic about the project? Look at the use of repetition, hyperbole, statistics etc.
READ
Read Article 1: An unhealthy invasion of privacy and Article 2: Medical researchers are not a threat to NHS patient privacy.
DISCUSS
Consider the following questions: • Identify the aims of each of the writers. Are the articles biased or unbiased? • Consider the use of language by each of the writers. How do they use language to communicate their views? • How do the writers back up their opinions? • Which article do you feel is most persuasive and why? Compare and contrast Article 2 and Richard's speech from the play. Think about the different styles of writing (one is a speech 46
the other a blog posting for a national newspaper). WRITE
Now use the information from the articles and what you have learned from the play to write copy for an NHS leaflet The leaflet should aim to: • Provide information about the Electronic Patient Record (EPR) and its use in medical research including defining any complicated terminology • Allay public fears about the use of personal data Think about: • The target audience • The purpose of the leaflet
EXTENSION Think about Richard's speech from the play. Using the information from Article 1 write a short speech that argues persuasively against the use of Patient Records in medical research. Ask students to perform their speeches in front of the class. Pay close attention to the delivery of the speech. Emphasise the importance of clear, controlled delivery.
47
LESSON 2: P.S.H.E & Citizenship KS4 AIM
To use drama techniques to explore issues of mental wellbeing as presented in Breathing Country.
OBJECTIVES
To understand the nature of panic attacks. To engage emotionally with issues that the individual may not have experienced. To use research to inform dramatic exploration. To work as a group to explore sensitive issues. To develop performance skills.
NATIONAL CURRICULUM LINKS
Understanding panic attacks
Knowledge and Understanding About Becoming Informed Citizens c: the work of parliament, the government and the courts in making and shaping the law d: the importance of playing a part in democratic… processes f: the opportunities for individuals and voluntary groups to bring about social change Developing Skills of Enquiry and Communication a: research a topical political, spiritual, moral, social or cultural issue b: express, justify and defend a personal opinion c: contribute to group and exploratory class discussions and take part in formal debate
RESOURCES
Developing Skills of Participation and Responsible Action a: use their imagination to consider other peoples’ experience… critically evaluate views that are not their own b: negotiate, decide and take part responsibly in school and community-based activities c: reflect on the process of participating A large empty class room or drama studio Article 3: Panic Attacks
48
ACTIVITY
WARM UP Ask the class to walk around the space and shake hands with as many people as possible. They must aim to 'meet' every other person in the room before you say stop. Repeat the exercise, this time they must not stop shaking hands with a person until they have found someone else to 'meet'. Repeat a third time this time when they shake hands with each other they must introduce themselves by saying: "My name is [name] and today I am feeling [emotion]" EXPLORE
Now ask your students to find a space to stand with their eyes closed. Explain that you will say a word and that they should think of a one word response to that trigger. When you tap them on the shoulder they should say the word. If they can’t think of a word they can say pass. Select from the following list. • • • • •
Mental Health Mental Illness Panic Attack Depression Anxiety
Repeat the exercise, this time asking for a word that demonstrates an emotional response. Now ask students to get into pairs labeling themselves ‘A’ and ‘B’. Explain that ‘A’s are the sculptors ‘B’s are the sculptor’s clay. Say that you will give them a theme and that the sculptor should create a sculpture. • • • •
Sculpture One: Privacy Sculpture Two: Anxiety Sculpture Three: Confidence Sculpture Four: Panic Attack
Ask them to show their sculptures to the class. READ
Read aloud the following speech from Breathing Country. Janet
I want to explain what it feels like when Lizzie has a panic attack. I want to explain because what triggers it may seem actually very minor – and from her reaction on the outside it isn’t always possible to tell. It’s unlikely today that she will fall over Or shake on the floor Or gulp for air Though in the past month she has done that. The attacks are not always dramatic. Sometimes you can be talking to someone having an attack.
49
And you’d never know that they feel like they can go at any moment. But inside, her mouth tastes of fear. She feels like she has lost an enormous amount of blood, that there is no oxygen in her head so she gulps in air. She feels like the skin on her cheekbones is being pulled and stretched right round her head, squeezing her brain out. She feels like she is going to pass out. She fears she has a terrible disease that causes these episodes She fears that she will die She has discovered that it helps to sit with her head down… But she doesn’t know why And after the attack she can see the black cloud coming And later, she knows it will rain, that life will seem impossible All over again…
DISCUSS
What does Janet tell us about Lizzie's condition? What do we understand about panic attacks from this speech? How does Lizzie feel? Do we have experiences of our own that are similar? Note that the speech is poetic, not medical, in its use of language. How does this help to portray the effects of a panic attack?
READ
Now read Article 3: Panic Attacks, an extract from the NHS website.
DISCUSS
How does this differ to Janet's speech? What extra detail have we learned?
EXPLORE
Divide the class into groups of 5-6. Give each group a copy of Janet's speech. Ask them to explore the text imagining how Lizzie is feeling. Explain that you want them to perform the speech as a group. Ask them to think about how they divide up the lines between them; which lines they say as individuals and which they say in unison. They should think about how they build the sense of panic that is described in the speech. Using everything they have learned from the play, articles, and discussion they should perform the piece as a choral speaking exercise, animating it as appropriate to show how Lizzie is feeling.
PERFORM
Now ask each group to perform to the rest of the class
DISCUSS
After each piece discuss the following questions with the class: • Was the piece successful? In what way? • What could have been improved? 50
LESSON 3: ICT KS4 AIM OBJECTIVES
To select relevant information from online sources. To develop presentation skills. To learn to use PowerPoint as an aid to public presentation.
Edexcel • Encourage students to gather, store, process, present and communicate information through activities in a range of contexts • Develop understanding of the wider applications and effects of ICT • Develop an awareness of ethical, social, economic and political consequences of the use of ICT systems for individuals, organisations and society through the study of meaningful applications. AQA • Develop the knowledge, concepts and skills which will enable candidates to develop a broad and balanced view on a range of information systems and their applications, an understanding of their capabilities and limitations and an ability to evaluate them critically • Develop the abilities of candidates, through the appropriate knowledge and concepts, to comment and reflect on the significant legal, political, social, environmental, economic and aesthetic applications, implications and effects of information technology OCR • Recognise the impact of new technologies on methods of working in the outside world, and on social, legal, economic, ethical and moral issues • Explore the use of ICT in a range of working environments and evaluate its potential when compared with other methods of working • Prepare themselves for working and living in a technology driven society, and consider the social, economic, political, legal, ethical and moral issues and security needs for data surrounding the increasing use of ICT White board and pens Internet access PowerPoint Projector
RESOURCES
To use the internet to research a topic and to transfer information from the web into a PowerPoint presentation.
NATIONAL CURRICULUM LINKS
Privacy and security
51
ACTIVITY
DISCUSS
Write the term 'privacy' on a white board. Ask your students what privacy means to them. Now, thinking about Breathing Country, ask the class to think of as many moments from the play as possible that deal with privacy. Some suggestions below: • • • • • • • • •
EXERCISE
Lizzie's blank Facebook page Janet won't let Richard see a medical record Simon posts a picture of Lizzie on Facebook Richard can't talk about his wife Simon is frustrated that Janet won't tell him why Lizzie is visiting the hospital Lizzie receives a letter from Janet Lizzie won't tell Richard where she is going on Monday mornings Simon follows Lizzie to the hospital Richard is made to read his personal diary in front of the inquiry
Split the class into small groups (3-4) ask each group to use the internet to explore one of the three topics below. TOPIC 1: Social Networking - what are the risks? Consider the following stage direction from Breathing Country. Lizzie returns to her laptop. She returns to Simon’s Facebook profile. His status update reads: ‘I SHARE, THEREFORE I AM’. There he is. On the screen, she goes through pictures of Simon having fun in pubs and beaches and on trips to the country and at parties wearing comical hats. Lizzie looks at them in awe. A notification pops up. ‘Simon has tagged a photo of you’. Troubled, she clicks through to the picture - it is the picture that she took of the two of them just a minute ago – the both of them smiling, looking happy. Lizzie
Oh god
She refreshes. And all of a sudden people begin to comment on the picture. Slowly, at first – but as Lizzie begins to feel violated with greater and greater rapidity – a nightmare panicky binge of messages, that eventually exceed Facebook These messages culminate in a messy screen-crash of text and binary-code-gobbledygook, as Lizzie, who cannot take anymore, panic attacks understatedly.
Look at the expansion of social networking. Research how social networks are used. Describe some of the main sites. How are they used apart for connecting friends (think about the business world etc). Look at the risks involved. Read their terms and conditions - how is data used? Find any news stories that demonstrate both the good and bad uses of social networking. Try to create a presentation that provides a balance of pros and cons. TOPIC 2: Security - problems with protection Look at the comments below. Martyn Thomas is a member of the advisory group for Breathing Country. 52
Medical records need better protection than internet banking, because if your money is taken through fraud, it can be replaced and if your account details are changed, or muddled with someone else’s, the damage can be repaired. In contrast, if your medical records are hacked or muddled, you may be harmed, and if private details become known, they will be known forever. The internet never forgets. Martyn Thomas (Computer Systems Engineer)
Research some of the security methods that banks use to protect their customers. Then consider these methods at work in the busy environment of the NHS. What are the problems? Find examples of security breaches in the NHS and consider the problem of keeping data secure. How many of the problems are due to human error? Create a presentation that highlights some of the difficulties with keeping data secure. TOPIC 3: Google - too much information? Consider the following dialogue from Breathing Country. Pause. Simon looks at the picture of Google Earth pulled up by Lizzie. Simon
With EPR You could create the most incredible map on Google Earth Do you know what I mean? Ok, I’ll piss off, then
Simon makes to go Richard
Hang on… what do you mean?
Excitedly, Simon gets the laptop and returns to a Google Earth picture of Britain, with layers of human addition. Simon
A map of the country. A satellite image. But look at how people add their own layers of information. Photos, warnings, hyperlinks, links to the weather. Some of it constantly updating – in real-time. It’s not just a picture…It’s a kind of living picture. A breathing picture.
Do some research into Google Maps, Google Earth and Google Streetview. Consider the benefits and uses of these applications then find examples of privacy and security issues. Create a presentation that explores the pros and cons of Google making this information available to everyone. You should include an explanation of the applications. Ask the students to use the information from their research to prepare a 2-3 minute presentation. They should create a series of PowerPoint slides to assist them. Emphasise that the slides should be used as a visual aid to supplement the vocal part of the presentation. PRESENT
Ask some or all of the groups to present to the class. 53
NOTE
You may wish to split this lesson plan over two lessons to allow more time in order that all groups have the opportunity to present. You could ask students to rehearse their presentations as a homework task.
54
LESSON 4: Drama KS4 AIM
To explore the emotional life of the characters from Breathing Country.
OBJECTIVES
To explore the text and to devise work based on Breathing Country. How to create, interpret and communicate a role or character. Work collaboratively and creatively to achieve shared dramatic intentions. Drama within its social, cultural and historical context
NATIONAL CURRICULUM LINKS
Understanding characters
AQA 8.1, Group 2: unscripted work - Theatre In Education presentation 9.1 Option 1: Devised thematic work (in response to a specific stimulus or theme) 9.3 Option 3: Improvisation (in response to a specific stimulus or theme) 10.3: Response to live productions seen during the course Edexcel Unit 1 - Live theatre performances - Newspaper and/or magazine articles Unit 2 - Develop and realize ideas in response to the play - Understand the social, cultural and historical context of the play
RESOURCES
OCR Area of study 4: Improvisation - Using a variety of exercises to develop confidence in improvisation - Giving work dramatic integrity so it matches intention Area of study 5: Genre, Style and Convention - Hot-seating - Theatre In Education - Naturalism White board and pens A large empty class room or drama studio
55
ACTIVITY
WARM UP Ask the class to walk around the room on their own in silence and find one person to follow. They must follow this person subtly so that the person remains unaware. Ask the students to stop walking when they think they can tell who is following them. When everyone has stopped walking ask the class who they thought was following them and see if they were correct. DISCUSS
Write the name of each character on the whiteboard. As a class, ask students to mind map all the details they can remember and what they imagine about each character. • • • •
EXPLORE
Lizzie Simon Richard Janet
Ask students to find a space in the room, choose one character from the play and think of one word that describes how that character feels at one specific point during the play. Ask them to add a movement to go with their word. Now put the students into groups of 4. Ask them to put the words and movements into an order to make a 'word pattern'.
CREATE
Give one of the following lines of dialogue to each of the groups of students: Lizzie:
Six months ago I switched off all devices. I pulled the plugs out. I went silent. But today I think I'm ready. I'm ready for life again .
Simon:
I scour the internet for traces of her - I spend hours on it - my brain gets feverish.
Simon:
I dream of her in jpegs.
Richard: No, it's alright, just my daughter. Lizzie:
I think it's time to draw a line in the sand.
Janet:
Sometimes a human being just needs to do their job.
Lizzie:
I was away. But I think I'm back now. Rebooted. All updates installed.
Simon:
"I share therefore I am!"
Simon:
It's not just a picture...It's a kind of living picture. A breathing picture.
Janet:
And later, she knows it will rain, that life will seem impossible. All over again...
56
Richard: Lizzie! Where have you gone. You think you can move forward, but you can't, don't you see? Simon: She drew a line under her past and there was only the future. Lizzie:
I can't talk to her, dad. It's not for the air. It's not for words.
Richard: You know, just then, you just looked just like your mother. Richard: Laura, yesterday, I think.... I caught a glimpse of you. Lizzie:
I kept on feeling like I was going to crash.
Lizzie:
You already lost me dad. You lost me months ago.
Richard: Oh come on, Simon. You cant resist a data search - its like porn for you Janet: Simon:
This is safe country. Breathing country. If I went loopy I'd tell people. So they know what to expect.
Lizzie:
What did it feel like when he mentioned mum?
Lizzie:
I don't know where we go from here dad.
Ask them to create a short scene using their word pattern and the line of dialogue they have just been given. PERFORM
Now ask your class to share their work. After each scene discuss the following questions with the class: Was the piece successful? In what way? What could have been improved?
57
LESSON 5: Science KS4 AIM
To conduct a research exercise.
OBJECTIVES
To enable students to gain an understanding of what role research plays in the development of science. To enable students to gain insight and knowledge of the issues surrounding The Electronic Patient Record and its practical application.
NATIONAL CURRICULUM LINKS
How Science Works - 4b: consider how and why decisions about science and technology are made, including those that raise ethical issues, and about the social, economic and environmental effects of such decisions AQA - 10.8: Societal aspects of scientific evidence The uses of science and technology developments can raise ethical, social, economic and environmental issues. - 10.9: Limitations of scientific evidence Edexcel - Topic 4: Use, misuse and abuse Twenty First Century - Module B2: Keeping Healthy - Making decisions about science and technology (Idea about Science). Personal and social decisions require an understanding of the science involved but also knowledge and values beyond science. In this module, students consider particular ethical issues arising in modern medicine, for example the right of individual choice versus social policy, illustrated through vaccination policy. AO1 Knowledge and understanding - Demonstrate understanding of the power and limitations of scientific ideas and factors affecting how these ideas develop - Draw on existing knowledge to show understanding of the benefits and drawbacks of applications of science
RESOURCES
Research task
Article 4: Sample questionnaire
58
ACTIVITY
INTRO
Give students a copy of Article 4: Sample questionnaire and ask them to fill it in for themselves. Now ask them to identify the 'closed' and 'open' questions. NB: The answer to 'Question 6: In which year was the first text message sent?' is all of them! Different sources suggest different dates.
DISCUSS
Discuss the following terms: Quantitative data: countable numbers. Can be produced by multiple choice questions, questions that require a number for an answer or yes/no type questions. Quantities. Qualitative data: descriptive answers. Can be observed but not measured. Qualities.
PLAN
In groups of 4 ask students to think about the key issues of the play. Triggered by the issues raised by Breathing Country ask them to design a questionnaire. The questionnaire should aim to gauge public knowledge and opinion about Electronic Patient Records (EPR). Consider the following: • • • • •
•
Use a combination of open and closed questions Aim to find out what the public knows about EPR What the public concerns are How people feel about the ethical issues raised Remember that some people will be unaware of EPR so your questions will need to be phrased in a way that can be understood Remember that it may be useful when you come to analyse your data to collect personal data such as age and sex
RESEARCH Working in the same groups of four conduct a survey. This could be within the school building or outside in the local area. COLLATE
Ask students to collate the data in a meaningful way. Quantitative data could be summarised in charts and tables for example. Ask them to think about what the data shows and how they will communicate their findings to an audience.
PRESENT
Ask your students to present their research findings. They can use PowerPoint, spreadsheets, charts, tables etc. They should consider what their main findings are and summarise these in a concise and clear manner.
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LESSON 6: RS KS4 AIM OBJECTIVES
To explore the emotional effects of suicide on the characters in Breathing Country. To develop an understanding of the religious perspectives on suicide and how these may or may not help people suffering with mental illnesses. To engage empathetically with issues surrounding mental health. Knowledge, Skills and Understanding 1 e: discuss and evaluate how religious beliefs and teachings inform answers to ultimate questions and ethical issues 1 g: interpret and evaluate a range of sources, texts and authorities, from a variety of contexts QCA Criteria 2.1i: Identify, investigate and respond to fundamental questions of life raised by religion and human experience, including questions about the meaning and purpose of life. Key Skills Developed AO1: recall, select, organise and deploy knowledge AO2: describe, analyse and explain AO3: evaluate different responses to‌moral issues, using relevant evidence and argument GCSE Specifications AQA (B) Module 1 B: Thinking about God and Morality Module 2 B: Key Beliefs, Ultimate Questions and Life Issues- Human relationships Module 4 B: Truth, Spirituality and Contemporary Issues
RESOURCES
Explore what the major religions have to say about suicide.
NATIONAL CURRICULUM LINKS
Choosing to die
Edexcel (A) Unit H1: Religion and Social responsibility White board and pens Article 5: Religion and suicide
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ACTIVITY
READ
Read aloud the following dialogue from Breathing Country. It is taken from the climatic scene towards the end of the play in which Lizzie finally confronts her father over the suicide of her mother. Lizzie
What did it feel like, when he mentioned mum?
Beat Because I don’t know that you value it, either. Privacy. I don’t think that you know what it means, for other people. I’m going to go out into your office and make an announcement. And I’m going to email all your contacts Schrader from the mail, too I’m going to tell them that your wife killed herself. Now do you understand what it feels like? You’ve nothing to be ashamed of. It wasn’t her fault, was it? It wasn’t your fault It was the drugs, wasn’t it? It was the drugs. You have nothing to hide. I don’t know where we go from here, dad. They stare at each other.
DISCUSS
Consider the events of the play. Lizzie's mother is a strong presence in the play. Discuss the ways in which Lizzie's mother's suicide may have affected both her and her father, Richard. Write some of the ideas on the white board. Some suggestions below: • • • • • • • •
Richard runs home to his daughter after Janet mentions her research on the suicidal effects of a particular anti-depressant. Lizzie fears being 'just like [her] mother' Richard lies to his colleagues about his wife's death saying it was a car accident Richard grieves over his lost wife in his daily diary entries Lizzie fears seeking help for her own condition Richard and Lizzie's relationship suffers Dealing with the suicide helps Lizzie to understand her own feelings Through grieving for his wife Richard is able to understand what privacy means to other people
Now consider the 'character' of Lizzie's Mother. Remember that she was suffering from depression. By the end of the play we are aware that she was taking anti depressants that were later discovered, in Janet's study, to cause suicidal feelings in patients. Ask your students to use their imaginations, and what they have learned from the play, to try to understand why some people may want to choose to die. Write the reasons on the white board. READ
Ask your class to get into pairs. Give each pair a copy of Article 61
5: Religion and suicide. Allocate one of the 4 religions to each of the pairs and ask them to read and discuss the relevant section of Article 5. EXPLORE
Now ask each pair to imagine they are giving advice to Laura in the weeks before she took her life. One member of the pair should be a representative of the religion allocated to them. The other an atheist. Ask them to perform the scene. They should imagine Laura is present - but she does not respond. Think about how the advice given differs and where it is similar.
PERFORM
Ask each pair to perform their scene to the class.
DISCUSS
Discuss how the advice of different religions differs. How does this compare to a non religious viewpoint?
EXTENSION Ask the students to write a well balanced argument as a response to the following statement: 'To commit suicide shows great disrespect not only to friends and relatives but also to oneself' Try to write in the following format: Some people believe... [agree with statement] Others believe... [disagree with statement] On consideration... [offer a balanced summary] The answer should aim to incorporate at least two of the religious view points from Article 5 as well as demonstrate an empathetic understanding of the issue as demonstrated in Breathing Country.
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ARTICLES
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ARTICLE 1: An unhealthy invasion of privacy ARTICLE 1
This article can be used to support Lesson 1: English ARTICLE
An unhealthy invasion of privacy How can the NHS proceed with a plan to breach 50 million people's privacy when its record on data security is so bad? The news that the privacy of millions of patients is to be breached by the NHS underlines the first rule of government databases, which is that once any part of the state acquires personal information it comes to regard that data – however sensitive – as the state's property. The second rule is also confirmed by the proposal to allow medical researchers access to 50 million records in order to identify patients who might be willing to take part in trials of new drugs. It is that once data is centralised by government or one of its agencies, the function of that database is quietly extended beyond its original purpose and the way it was promoted to the public. Such measures are always presented as making life easier and safer for the individual, but this pretended concern is always swiftly forgotten. Harry Cayton who is about to take over the Information Governance Board for Health put his finger on it when he said, "There is pressure from research and from the prime minister to beef up British Research. They want a mechanism by which people's clinical records could be accessed for the purposes of inviting them to take part in research." On security grounds alone this will be a disaster. In September Pulse reported that four out of five NHS trust have lost patient data or suffered security breaches since the beginning of last year. There have been more than 1,300 incidents since last year. Figures obtained by Pulse under the Freedom of Information Act showed that there were 557 incidents of lost data and 794 breaches of confidentiality. These included a report that staff at Northampton General Hospital NHS Trust were disciplined after posting pictures of a patient on Facebook. There are other reports of staff emailing patient records to their personal computers before leaving the NHS. At the time of this report Dr Chris Frith, a GP in Hereford, said: "All breaches of confidentiality, electronic or otherwise, have a 64
subtle detrimental effect on the patient's trust of their clinicians." That must be true but the problem with government is that it continues to expand the databases and access to them without ever addressing these security issues. Only Computer Weekly last month noticed 300 million patient records with patient identifiable information, such as dates of birth, post codes and NHS numbers – have been transferred to academic institutions. Who has control over these records? Who has the ability to check that they are not being abused? The larger point to make is that under Labour, government has shown an increasing sense of entitlement over not just our personal data, but over our bodies and biological integrity. Little by little we are being required to give up more of ourselves to the state – fingerprints, iris measurements, the DNA of innocent people – and this arrogance about patient records fits the pattern of presumption. Gordon Brown's belief that all of us should be organ donors unless we opt out is part of this new trend and is typical of the convinced authoritarian who stresses hazily defined needs of the collective good over the wishes and integrity of the individual. You see that attitude run right through government plans from the horrific children's database, ContactPoint, which will give access to a million people, to the ID card's national identity register, which will be open to scores of government agencies as well a foreign law enforcement officials from Palermo to Potsdam. What Britain needs is proper privacy legislation, which, like the South African Constitution, guarantees biological integrity as well as ensuring that personal data remains exactly that. It's your body, and your life; not theirs Henry Porter Source: http://www.guardian.co.uk/commentisfree/henryporter/2008/nov/17/nhs-privacy
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ARTICLE 2 : Researchers are not a threat to NHS patient privacy ARTICLE 2
This article can be used to support Lesson 1: English ARTICLE
Researchers are not a threat to NHS patient privacy Giving professional medical researchers better access to patient records could help develop more effective treatments, says Simon Wessely As a medical researcher frequently involved in running studies to improve health I was disappointed to find your main article suggested the privacy of NHS patients would be undermined by a plan to let researchers have access to their medical files. The reader could easily walk away thinking the medical research community is attempting to bypass medical confidentiality, avoid consent, and recruit people as "guinea pigs" for God knows what. That is not true. First the proposal does not in any way move away from informed consent as the basis for medical research - all that researchers are asking for is the ability to contact people so they can themselves make a choice as to whether or not they want to take part in research. If they don't - fine. We know from the disease charities for example that many people are keen to participate in decent research, but never get asked. Researchers also want to make sure the information goes to the right people, and hence do not needlessly bother people who don't have the health problem in question. Second, those who would be allowed to check records to determine whether someone might be eligible to participate in research would be people like me - doctors and researchers who will have the same duty of confidentiality and the same draconian punishment if we transgress. Third, people should not assume it is only your friendly family doctor who looks in the notes to see if you might be interested in taking part in research. He/she would never rarely have the time, which is part of the problem. It is the practice nurse, or practice receptionist, or whoever, and they may not always have the same standards of confidentiality and/or sanctions as doctors do. Furthermore they are more likely to actually know the patient personally, something many patients are rightly concerned about. People need to be crystal clear: what is on offer is just that, an offer, accompanied by a full, proper, explanation of what is 66
involved; giving people the chance to take part in a serious, monitored, previously ethically approved study. A chance not just to help themselves, but everyone else with the same condition. Overall, the NHS belongs to us all, and all of us depend on medical research to improve treatments, outcomes, and the health of the public. What is wrong with suggesting patients are entitled to get offers to take part in worthwhile activities such as ethically approved medical research rather than endlessly receiving junk mail about credit cards that they don't need and don't want? • Professor Simon Wessely is head of the department of psychological medicine at the Institute of Psychiatry Source: http://www.guardian.co.uk/society/joepublic/2008/nov/17/nhs-health
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ARTICLE 3: Panic attacks ARTICLE 3
This article can be used to support Lesson 2: PHSE & Citizenship INTRODUCTION Everyone experiences feelings of anxiety and panic during their lifetime. It is a perfectly natural response, particularly when you are in a dangerous or stressful situation. However, for people with panic disorder, feelings of anxiety, stress and panic can occur at any time, usually for no obvious reason. Anxiety conditions There are several conditions where anxiety is one of the main symptoms. Phobias, generalised anxiety disorder (GAD) and post-traumatic stress disorder can all cause severe anxiety. Panic attacks A panic attack is when your body experiences a rush of intense psychological (mental) and physical symptoms. You may feel an overwhelming sense of fear, apprehension and anxiety. As well as these feelings, you may also experience physical symptoms, such as nausea, sweating, trembling and a sensation that your heart is beating irregularly (palpitations). A panic attack can be very frightening and intense, but it is not dangerous. It will not cause you any physical harm. How common is panic disorder? At least one person in 10 experiences occasional panic attacks, which are usually triggered by a stressful event or situation. However, people with panic disorder have recurring and regular attacks, often for no apparent reason. The number of panic attacks that you have will depend on the severity of your condition. Some people may have one or two attacks each month, while others may have several attacks a week. Because panic disorder is a very unpredictable condition it leaves affected people feeling constantly anxious and concerned about when their next attack will be. In the UK, approximately one person in 100 has panic disorder. Most people first develop the disorder during their 20s, and it is approximately twice as common in women as it is in men. SYMPTOMS The symptoms of a panic attack can be very frightening and distressing. Symptoms tend to occur very suddenly, without any warning, and often for no apparent reason. As well as overwhelming feelings of anxiety, a panic attack can also cause the following symptoms: • • •
sensation that your heart is beating irregularly (palpitations), sweating, trembling,
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• • • • • • • • • • • • •
hot flushes, chills, shortness of breath, choking sensation, chest pain, nausea, dizziness, feeling faint, numbness, or pins and needles, dry mouth, a need to go to the toilet, ringing in your ears, and a feeling of dread, or a fear of dying.
The symptoms of a panic attack can be so intense that it can make you feel like you are having a heart attack. The fear of having a heart attack can then add to your sense of panic. However, it is important to be aware that symptoms such as a racing heart beat, or shortness of breath, will not actually lead to you having a heart attack. Although frightening, a panic attack will not cause you any physical harm. People who have had panic disorder for some time will usually learn to recognise this 'heart attack sensation', and will be more aware of how to control their symptoms. The symptoms of a panic attack normally peak within 10 minutes. Most attacks will last for five to 30 minutes. Recurrent panic attacks People with panic disorder have panic attacks on a recurring basis. Some people with the condition have panic attacks once or twice a month, while others have attacks several times a week. People with panic disorder also tend to have ongoing and constant feelings of worry and anxiety. Because panic attacks can be very unpredictable, if you have panic disorder, you may feel stressed and worried about when your next attack will be. Depersonalisation During a panic attack, your symptoms can feel so intense and out of your control that you may feel detached from the situation, almost as though you are an observer. It can make the situation seem very 'unreal'. This sense of detachment is known as depersonalisation. Being detached from the situation does not provide any relief, or make a panic attack less frightening. Instead, it often makes the experience more confusing and disorientating. CAUSES As with many conditions that affect your mental health, the exact cause of panic disorder is not yet fully understood. It is thought that the disorder is most likely caused by a combination of physical and psychological factors. Some of these factors are 69
outlined below. •
•
•
Stressful or traumatic experiences in your life, such as a bereavement, can sometimes trigger feelings of panic and anxiety. These feelings may be apparent soon after the event, or they may unexpectedly be triggered years later. Having a close family member with panic disorder may increase your risk of developing the condition. However, the precise nature of the risk is not yet known. Neurotransmitters are chemicals that occur naturally in your brain. It is thought that if you have an imbalance of these chemicals, it may increase your risk of getting conditions such as panic disorder.
Fight or flight reflex Some researchers believe that panic disorder is closely associated with your body's natural 'fight or flight reflex'. This reflex is your body's way of protecting you from stressful and dangerous situations. In a dangerous situation, anxiety and fear trigger your body to release hormones, such as adrenalin. This causes your breathing and heart rate to increase, helping you to prepare you for the situation. When you are faced with a dangerous or frightening situation, your body reacts in a very similar way to a panic attack. However, with panic disorder, there is usually no obvious trigger for your symptoms. Researchers believe that your fight or flight reflex may be triggered abnormally in people who have panic disorder. Source: http://www.nhs.uk/Conditions/Panic-disorder/Pages/Introduction.aspx
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ARTICLE 4: Sample questionnaire ARTICLE 4
This article can be used to support Lesson 5: Science SAMPLE QUESTIONNAIRE Please answer the questions below: QUESTION 1 Do you have a Facebook account? Yes No QUESTION 2 What is the electronic patient record?
QUESTION 3 How many social network web sites do you use? 1 2 3 4 5+ QUESTION 4 Do you own a laptop? Yes No QUESTION 5 How would you feel if you your medical records were lost?
QUESTION 6 In which year was the first text message sent? 1989 1992 1993 QUESTION 7 What do you think about the NHS?
QUESTION 8 How does Google street view threaten privacy?
Thank you for completing this questionnaire.
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ARTICLE 5: Religion and suicide ARTICLE 5
This article can be used to support Lesson 6: RS CHRISTIANITY Christians are mostly against suicide. The arguments are usually based on the beliefs that life is given by God, and that human beings are made in God's image. Some churches also emphasise the importance of not interfering with the natural process of death. Life is a gift from God • all life is God-given • birth and death are part of the life processes which God has created, so we should respect them • therefore no human being has the authority to take the life of any innocent person, even if that person wants to die Human beings are valuable because they are made in God's image. Human life possesses an intrinsic dignity and value because it is created by God in his own image for the distinctive destiny of sharing in God's own life. No-one has the right to value anyone, even themselves, as worthless. Arguments based on the quality of life are completely irrelevant . Some features of Christianity suggest that there are some obligations that go against the general view that suicide is a bad thing: • Christianity requires us to respect every human being • If we respect a person we should respect their decisions about the end of their life HINDUISM Hinduism is less interested than western philosophers in abstract ideas of right or wrong. Rather it focuses on the consequences of our actions. Hindus believe in the reincarnation of the soul (or atman) through many lives - not necessarily all human. The ultimate aim of life is to achieve moksha, liberation from the cycle of death and rebirth. A soul's next life is decided by karma, as the consequence of its own good or bad actions in previous lives. You could regard a soul's karma as somehow representing the net worth of its good and bad actions. A soul cannot achieve moksha without good karma. Another important principle is ahimsa, not being violent or causing harm to other beings. 72
Killing (euthanasia, murder, suicide) interferes with the killed soul's progress towards liberation. It also brings bad karma to the killer, because of the violation of the principle of nonviolence. When the soul is reincarnated in another physical body it will suffer as it did before because the same karma is still present. The doctrine of karma means that a Hindu tries to get their life in a good state before they die, making sure that there is no unfinished business, or unhappinesses. They try to enter the state of a sannyasin - one who has renounced everything. Prayopavesa, or fasting to death, is an acceptable way for a Hindu to end their life in certain circumstances. Prayopavesa is very different from what most people mean by suicide: • it's non-violent and uses natural means; • it's only used when it's the right time for this life to end when this body has served its purpose and become a burden; • unlike the suddenness of suicide, prayopavesa is a gradual process, giving ample time for the patient to prepare himself and those around him for his death; • while suicide is often associated with feelings of frustration, depression, or anger, prayopavesa is associated with feelings of serenity Prayopavesa is only for people who are fulfilled, who have no desire or ambition left, and no responsibilities remaining in this life. It is really only suitable for elderly ascetics. Hindu law lays down conditions for prayopavesa: • inability to perform normal bodily purification • death appears imminent or the condition is so bad that life's pleasures are nil • the decision is publicly declared • the action must be done under community regulation ISLAM
Muslims are against suicide. They believe that all human life is sacred because it is given by Allah, and that Allah chooses how long each person will live. Human beings should not interfere in this. Life is sacred. Suicide is not included among the reasons allowed for killing in Islam. Do not take life, which Allah made sacred, other than in the course of justice. Qur'an 17:33 If anyone kills a person - unless it be for murder or spreading mischief in the land - it would be as if he killed the whole people. Qur'an 5:32
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Allah decides how long each of us will live When their time comes they cannot delay it for a single hour nor can they bring it forward by a single hour. Qur'an 16:61 And no person can ever die except by Allah's leave and at an appointed term. Qur'an 3:145
Suicide is explicitly forbidden Destroy not yourselves. Surely Allah is ever merciful to you. Qur'an 4:29 The Prophet said: "Amongst the nations before you there was a man who got a wound, and growing impatient (with its pain), he took a knife and cut his hand with it and the blood did not stop till he died. Allah said, 'My Slave hurried to bring death upon himself so I have forbidden him [to enter] Paradise.' " Sahih Bukhari 4.56.669
JUDAISM
The Jewish tradition regards the preservation of human life as one of its supreme moral values and forbids doing anything that might shorten life. ...The message of Judaism is that one must struggle until the last breath of life. Until the last moment, one has to live and rejoice and give thanks to the Creator... Dr Rachamim Melamed-Cohen, Jewsweek, March, 2002
Jewish law and tradition regard human life as sacred, and say that it is wrong for anyone to shorten a human life this is because our lives are not ours to dispose of as we feel like. All life is of infinite value, regardless of its duration or quality, because all human beings are made in the image of God. It is not lawful to kill oneself to save oneself from pain. A passage in the Talmud tells the story of Rabbi Chanina ben Teradion, who was being burned alive by the Romans. His pupils urged him to end his suffering quickly by opening his mouth and inhaling the flames. He replied, "It is better that He who gave [me my soul] should take it rather than I should cause injury to myself." It's also against Jewish law to help someone to kill themselves, since one is not allowed to enable another person to break Jewish law. Source: http://www.bbc.co.uk/religion/
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