User Empowerment through Information Systems

1. User Empowerment through Information Systems Tim Greacen User representative at the Hôpital Européen Georges Pompidou tgreacen@noos.fr

2. Résumé Users are carers. Like all carers, to be good at it, users need access to good information and training. This poster presents three recent examples of user-friendly (and user-created) health information systems in Paris.

3. Argument 1: Users are carers. • The end of the agent /patient distinction in health care systems. • Users care. Like all carers, users are public health "agents". They have personal and inter-personal health projects. • Users assume responsibility for decisions they make in these projects. They demand to participate in decisions at all levels. They want appropriate information at the appropriate time so that they can make well-informed decisions. • Users need user-friendly health information systems.

4. Argument 2: Like all carers, to do it well, users need good information and training. Example 1: “La Maison des Usagers” : a resource centre for users in a Paris hospital Example 2: “La Cité de la Santé”: a health information centre for the general public in a Paris museum Example 3: a Health Information Project in a Paris hospital

5. 1: La Maison des Usagers • What is it? A meeting space and resource centre for user associations, situated at the centre of the hospital, close to the main entrance. • Who created it? A group of staff, user associations and individual users • When & Where? The project was initiated in 1996 at Broussais Hospital, before it was closed in 1999-2000, with most services being transferred to the new Georges Pompidou European Hospital where the Maison des Usagers itself was created. • Rationale: Users need not only information, but also dialogue, debate, representation and recognition.

6. How does it work? A space where user associations dealing with specific illnesses (diabetes, cancer, HIV/AIDS, alcoholism…) or health-related issues (ethics, patients rights, community interests…): • meet individual users • meet each other to work on common hospital or community issues • organise collective events • create easy access to brochures, posters and exhibitions on key health issues • produce a regular users’ newspaper • facilitate user evaluation of hospital procedures and information documents • facilitate user participation in hospital decisions.

7. 2: La "Cité de la Santé"(the City of Health) • What is it? A service designed to address the general public’s needs in terms of information about health and the health system • Who created it? The modern science and industry museum in Paris, “la Cité des Sciences et de l’Industrie”, with a consortium of national and regional user associations, major professional groups, health service providers and public health insurance groups, supported by local and national health funding agencies.

8. When and how? Created along the lines of the “Cité des Métiers”, a successful Jobs & Life-long Training Information Centre run by a collective bringing together all the major government agencies working in the area of employment, the “Cité de la Santé” was initiated with a five month trial period beginning in December 2001. • Rationale: • Whereas up to the 1990s, users had trouble accessing information on health issues, now there is almost too much information, particularly since the arrival of Internet. A major aim is to help users to find their way amongst all these different sources of information. • Users need an interactive information centre built around their questions (demand) and not solely around service provision or institutional or commercial criteria (offer) • Users have trouble working out the implications of the different points of view of different stakeholders in the health field. A second major aim is to get the major stakeholders to work together using a common language. • Users need one-to-one counselling with regard not just to health issues but also to health information issues. They have problems understanding what health professionals have told them and why different professionals and different Internet sites have different opinions concerning their problems. • Friends and family often have trouble accessing information about their loved one’s illness or disability.

9. How does it work? • Four access points: • Knowing your rights • Keeping in good health / prevention • Finding information about a health problem • Living with a health problem or a disability / helping someone who is. • One to one information counselling with experts at each of these access points (legal & social welfare experts, health education professionals, doctors and user groups) • Open 6 days a week (closed Mondays), all year round, from 12h30 to 18h30 • Access to the best multimedia health library in France • 20,000 books, professional and general public journals, documents, • 20 CDROM/Internet access points with selected sites • 400 films … • An extensive collection of up-to-date health brochures in all areas • Workshops, lectures, forums, exhibitions …

10. Examples of questions at the Cité de la Santé • What sort of help exists to help me organise looking after my husband who has Alzheimer’s disease? • What can you tell me about diets and exercise for a 62 year old man with heart problems? • Is there a cure for depression? • If you have high blood pressure, do you have to take the treatment all your life? • How can I access my medical records? • What can I do for my daughter who is alcoholic?  • Will the public insurance scheme pay for contact lenses? • I have seen two doctors for my skin problem and they didn’t give the same advice – can I find information about it on the Net?

11. 3: A Health Information Centre in a Paris Hospital • What is it? A project to create an information centre on all aspects of health care provision at the Georges Pompidou European Hospital in Paris • Who is behind the project? User representatives, management and medical staff. • When? The project has been under discussion since the creation of the Hospital in 2000. A specific space, currently occupied by the old hospital lending library, is to be progressively adapted to create a multimedia information centre • Rationale: Users need information about the treatment and care that the hospital is recommending for them. Staff are not always available to give that information when users are able or ready to integrate it. • How will it work? A space where hospital service users can access: • information on the specific treatment they are about to receive • information that has been created by the professionals that are delivering the care in question, in partnership with user groups and user workshops • information in different forms: Internet, brochures… • personalised support with regard to that information with trained information nurses

12. How users might use the Health Information Centre: an example • Françoise gets bad newsAfter an initial consultation, a blood test, a biopsy, the oncology specialist announced to Françoise that she had breast cancer. She only managed to listen to about half of his explanation. The words she could read in her medical records seemed vague and unreal. She looked at them, but didn't understand them: mastectomy, radiotherapy, chemotherapy. It would all begin next week.

13. So many questions, but how and when to ask them? She tried to imagine what a mastectomy would be like. How would she look? And the scar? How would she manage? How would she dress? And her husband? Their relationship? Their sex life? She thought about her children: what should she tell them? And the risks? Was she going to survive? For how long? She managed to ask a couple of questions and was grateful for the doctor's comforting answers. She didn't have the courage to ask any more. She knew he was running late: he had already taken 40 minutes with her and the waiting room was full of other women. Some of them looked really ill.

14. You need answers to your questions before you can make decisions. But, before she left, he explained that she would no doubt have other questions as time went by and as the treatment went ahead. It was important she understood what was going to happen so that she could prepare herself. She should understand the different treatment options so that, together, they could choose the strategy that would best suit her.

15. A health and treatment information centre at the Hospital He added that the service had developed an Information Centre for the patients: brochures, a library, touch-screen computers, Internet. She could ask questions whenever she felt like it, at her own speed; she could take all the time she wanted. Special information nurses would be there to explain things if she needed them. She could come whenever she wanted to.The doctor was right. Each day brought a new lot of questions.

16. A user-friendly environmentThe very next day, F. went to her first appointment.There were 5 or 6 other people already there – reading books, in front of computer screens – a pleasant atmosphere, reassuring, quiet and friendly.The Information Nurse showed her how to use the touch-screen. There was even access to Internet. The touch-screen programme had been developed by the Oncology Service at the hospital: there were even photos of the doctors and nurses, the service and the hospital. Even her doctor was in the photo.

17. Anonymous information, at your own speed, with help if you need it.She saw the word "mastectomy" but she didn't feel up to looking at that just yet. It could wait. First of all, she wanted to know how many women got these cancers. How often did it happen? She discovers that there are different stages. That's a good question for the doctor: what stage am I at? She asks the Health Information Nurse, who shows her how to consult her medical records on-line. Stage 2.

18. Enough knowledge to share responsibility: it’s not only doctors who have to prepare consultations. What does Stage 2 mean? She clicks on the words and a new screen comes up. Most women discover their cancer at Stage 2. It's serious. You have to act quickly. But it's not too late. She gives herself a pause to think about it all. She pours herself a coffee. How long will all these treatments take? Will she be able to keep working? The doctor had talked about it but she couldn't remember what he'd said. And her breasts? Would people notice? She decides to follow the advice on the screen and to prepare a list of questions for her next appointment with the doctor.