Presentation at the European Parliament January 2010

1. How to Cure the EU Patient Information Gap - Inequalities and Good Examples and the Way Forward As a first step,one question that needs to be answered is ... What do patients want to know? Alexandra Wyke, PatientView

2. Patients are already bombarded with vast amounts of information—from all quarters, in all media A single notice-board in a UK hospital contains information on patients’ rights, on the costs of living with cancer, contact names and addresses of patients’ groups, details about self-management courses, and much more ...

3. Patients are already bombarded with vast amounts of information—from all quarters, in all media A single pin-board in a UK hospital has patient information on their rights, the costs of living with cancer, contact names and addresses of patients groups, self-management courses and more..... A multitude of healthcare stakeholders act as suppliers of patient information. Each comes with their own agenda and interests: ... plus the traditional media Family and friends. Other informed patients. Patient groups. Consumers and the public. Providers (institutions and people). Payers (insurers and government). Regulators (all aspects of healthcare). Government (international, national, regional, local). Think-tanks and policy advisers. Industry (pharma, insurers, IT, construction, catering, etc). Public health administrators (dealing with wellness/lifestyle). Academia and universities. Government health-related agencies. International institutions (such as UN bodies).

5. Exchange experiences.

6. Select experts, facilities and resources.

7. Identify best practice.

8. Support patient-led research.

9. Campaign as a cohesive force.An article in The Economist, April 16th 2009, entitled ‘Health 2.0’, noted: “Neil Seeman, a health system researcher at the University of Toronto, believes that a single post from a trusted surgeon- blogger can have a far-more immediate impact on improving surgical care globally than any peer-reviewed trial published in a prestigious journal.”

12. Patients’ requirements for information are not being met ... Since 2006, patients continue to be dissatisfied with the healthcare information available: “For patients with epilepsy, the single-most important worry is to have investigations/treatments explained at a level they can understand, and be given a chance to be an active decision-maker in their careplan (if they are capable). They would also like a realistic prognosis to be offered, and to be made aware of epilepsy charities and benefits.” —epilepsy patient group, UK1. “Information is often not accessible to people with vision impairments.” —patient group, Ireland2. “In Estonia, where 30% of the population, and about 80% of all people living with HIV are Russian-speaking, patient information on anti-retroviral drugs is not available in Russian.” —patient group, Estonia2. “Since the bills are sent to the patient (who gives them for settlement to the insurance), every patient knows how much is charged for the treatments. But the information is not available online.” — group, Switzerland3. Sources: 1 Patients’ Priorities for Research into Epilepsy. A Survey of Patient Groups 2008, by PatientView, commissioned by the James Lind Alliance (JLA) and DUETs, 2008 http://www.lindalliance.org/pdfs/Epilepsy/Patients'%20Priorities%20for%20Epilepsy%20Research%20JLA%20%20DUETs.pdf. 2. Survey of Patient Groups’ Attitudes to the Pharmaceutical Industry, conducted by PatientView in December 2009, due to be published in mid-January 2010 in HSCNews International. 3. Survey of patient groups, by PatientView, commissioned by Health Consumer Powerhouse for its Euro Health Consumer Index 2009 http://www.healthpowerhouse.com/files/Report%20EHCI%202009%20091005%20final%20with%20cover.pdf.

13. Patients’ requirements for information are not being met ... How good havepharma companies (in general) been at providing the following types of information during 2009? Source: online December 2009 global survey of 655 patient groups with interests in all major medical conditions, from 46 different countries, conducted in five languages. Results to be published in HSCNews International, end-January 2010. © PatientView 2010.

14. Though some pharma companies are better than others ... Source: online December 2009 global survey of 655 patient groups with interests in all major medical conditions, from 46 different countries, conducted in five languages. Results to be published in HSCNews International, end-January 2010. © PatientView 2010.

15. A new approach ... A new approach and methodology is clearly needed if patients’ informational needs are ever to be satisfied. The starting point must be to look at the world from the patient’s angle ...

16. A new approach ... Put yourself in the position of the patient: The moment an individual feels symptoms that could suggest a major disease (for example, cancer), they enter a personally-uncharted world in which new challenges intrude into three of the major areas of daily life Healthcare Any person with a new diagnosis faces novel challenges in three of the most-relevant aspects of their lives. Work Home life

18. A woman being treated for breast cancer may wish to know about accessing reconstructive breast surgery.

19. The parents of a child with leukaemia may wish to access round-the-clock information and support, to help manage their child’s condition. Even patients with similar conditions have special, sometimes unique, informational needs that have to be accommodated .... such as what resources are available in the local area in which they live

20. Charts and maps ... But, despite the diversity of data required to fulfil patients’ informational needs, these needs can be categorised and defined. By reviewing its databank of patient survey material gathered over the last ten years, PatientView has been able to develop a methodology for: Charting the main informational requirements facing patients in the three main areas of their lives: healthcare, work and home. Mapping the information provided by patient groups (PatientView’s area of expertise) to patients’ informational requirements. (A similar mapping exercise could, of course, be conducted upon the information supplied by other providers of information.)

21. Charting: categorisation of the informational requirements of patients ... 34 categories For example: — How to build trusted partnerships with healthcare professionals. — Understanding complex medical terminology. — How/where to access diagnostic tests. — How to cope with side-effects. 16 categories For example: — Renegotiating relationship with employer. — Renegotiating relationship with work colleagues. — Evaluating new work needs. — Coping with re-tasking. Work

22. Charting: categorisation of the informational requirements of patients ... 14 categories For example: — Re-negotiating relationships with family and friends. — Coping with the stigma associated with the medical condition. — Relying on a carer(s) to look after basic physical needs. Home Life Categories are fine-tuned for specific medical conditions and for localities. Fine-tuning could, for example, include relevant gender-oriented issues; varying provision of care across a country; different side-effect profiles of treatments; etc.

24. They can supply the full spectrum of patient informational needs.

25. They function at international, national, and local levels (but are particularly valuable at the latter—which is where the patients live).

26. They do not, however, act in a vacuum—their facilities depend upon the support of other healthcare stakeholders (such as medical professionals).Source: PatientView database

27. For more information,contact details are: