1. Click to edit Master title style Click to edit Master subtitle style 12/31/20131 Slide 1 January 2010 Slide 1 January 2010 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. Click to edit Master title style Click to edit Master subtitle style 12/31/20132 Slide 2 January 2010 Slide 2 January 2010 Patients are already bombarded with vast amounts of informationfrom 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. Click to edit Master title style Click to edit Master subtitle style 12/31/20133 Slide 3 January 2010 Slide 3 January 2010 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). Patients are already bombarded with vast amounts of informationfrom all quarters, in all media

4. Click to edit Master title style Click to edit Master subtitle style 12/31/20134 Slide 4 January 2010 Slide 4 January 2010 Social media has multiplied massively the volume of healthcare information: Using chat rooms, Facebook, MySpace, YouTube, Wordpress.com, Twitter, Skype, and Flickr, patients meet in virtual space to: Share information and know-how. Exchange experiences. Select experts, facilities and resources. Identify best practice. Support patient-led research. 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. Patients are already bombarded with vast amounts of informationfrom all quarters, in all media

5. Click to edit Master title style Click to edit Master subtitle style 12/31/20135 Slide 5 January 2010 Slide 5 January 2010 Patients requirements for information are not being met... But not all patient information is: helpful; delivered in time; supplied in a suitable medium or language; trustworthy. Sometimes, the information that patients seek may not be directly related to their disease or healthcare. Patients may not even know that valuable information exists.

6. Click to edit Master title style Click to edit Master subtitle style 12/31/20136 Slide 6 January 2010 Slide 6 January 2010 A global survey of patient groups conducted by PatientView back in August 2006 for its publication, Health and Social Campaigners News International, found that over half of the 192 patient groups surveyed believed patient information to be inadequate (the equivalent figure among the European-based groups responding to the survey was 55%). How well does the healthcare information available in your country meet the needs of the people you represent? % of responses of 192 patient groups Source: HSCNews International, issue 31, August 2006 Patients requirements for information are not being met... Very well Satisfactorily Not very well Does not meet needs at all

7. Click to edit Master title style Click to edit Master subtitle style 12/31/20137 Slide 7 January 2010 Slide 7 January 2010 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, UK 1. Information is often not accessible to people with vision impairments. patient group, Ireland 2. 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, Estonia 2. 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, Switzerland 3. 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. 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. http://www.healthpowerhouse.com/files/Report%20EHCI%202009%20091005%20final%20with%20cover.pdf Patients requirements for information are not being met...

8. Click to edit Master title style Click to edit Master subtitle style 12/31/20138 Slide 8 January 2010 Slide 8 January 2010 Patients requirements for information are not being met... How good have pharma 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.

9. Click to edit Master title style Click to edit Master subtitle style 12/31/20139 Slide 9 January 2010 Slide 9 January 2010 How well do you believe the following companies performed in 2009 in their ability to provide information to patient groups? Rankings for 2010 Results from global survey Total number of respondents = 655 Rank Change in rank versus 2009 Pfizer and Wyeth [merged in 2009].1unchanged AstraZeneca (AZ). 2+ 6 Novartis.= 3- 1 Abbott Laboratories.= 3+ 4 Roche [Hoffmann-La Roche]/Genentech.= 3+ 3 Johnson & Johnson (J&J).= 5unchanged Baxter International.= 7n/a Eli Lilly.= 7- 3 Sanofi-Aventis.= 7+3 Merck & Co.= 9- 6 GlaxoSmithKline (GSK).10- 2 Bristol-Myers Squibb (B-MS).11n/a Bayer.12n/a Amgen.= 13n/a Boehringer-Ingelheim (B-I).= 13n/a 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.

10. Click to edit Master title style Click to edit Master subtitle style 12/31/201310 Slide 10 January 2010 Slide 10 January 2010 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 patients angle... A new approach...

11. Click to edit Master title style Click to edit Master subtitle style 12/31/201311 Slide 11 January 2010 Slide 11 January 2010 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 Home life Work Healthcare Any person with a new diagnosis faces novel challenges in three of the most- relevant aspects of their lives. A new approach...

12. Click to edit Master title style Click to edit Master subtitle style 12/31/201312 Slide 12 January 2010 Slide 12 January 2010 Patients with different diseases face varying challenges or issues. Take the example of cancer: A man with prostate cancer may wish to know the risks/benefits of watchful waiting versus treatment. A woman being treated for breast cancer may wish to know about accessing reconstructive breast surgery. The parents of a child with leukaemia may wish to access round-the-clock information and support, to help manage their childs condition. A new approach... 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

13. Click to edit Master title style Click to edit Master subtitle style 12/31/201313 Slide 13 January 2010 Slide 13 January 2010 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 (PatientViews 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.) Charts and maps...

14. Click to edit Master title style Click to edit Master subtitle style 12/31/201314 Slide 14 January 2010 Slide 14 January 2010 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

15. Click to edit Master title style Click to edit Master subtitle style 12/31/201315 Slide 15 January 2010 Slide 15 January 2010 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.

16. Click to edit Master title style Click to edit Master subtitle style 12/31/201316 Slide 16 January 2010 Slide 16 January 2010 Mapping : matching providers of patient information to informational categories... Patient groups Their patient informational support is different from that produced by the other suppliers of patient information (and is, arguably, more patient-relevant): They seeand accordingly work fromthe patient perspective. They can supply the full spectrum of patient informational needs. They function at international, national, and local levels (but are particularly valuable at the latter which is where the patients live). They do not, however, act in a vacuumtheir facilities depend upon the support of other healthcare stakeholders (such as medical professionals). Source: PatientView database

17. Click to edit Master title style Click to edit Master subtitle style 12/31/201317 Slide 17 January 2010 Slide 17 January 2010 For more information, contact details are: Dr Alexandra Wyke CEO, PatientView Woodhouse Place, Upper Woodhouse, Knighton, Powys, LD7 1NG, UK Tel: 0044-(0)1547-520-965 info@patient-view.com Company number: 3944382 PatientView for patient views