What Patients Want To Know

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Slide 1January 2010Slide 1January 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



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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 ...



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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).




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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.”




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Patients’ requirements for informationare 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.



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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 countrymeet the needs of the people you represent?

% of responses of 192 patient groups Source: HSCNews International, issue 31, August 2006


Very well

Satisfactorily

Not very well

Does not meet needs at all



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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.


http://www.lindalliance.org/pdfs/Epilepsy/Patients'%20Priorities%20for%20Epilepsy%20Research%20JLA%20%20DUETs.pdf

http://www.healthpowerhouse.com/files/Report%20EHCI%202009%20091005%20final%20with%20cover.pdf



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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.



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How well do you believe the following companies performed in 2009 in their ability to provide information to patient groups?

Rankings for 2010Results from global surveyTotal number of respondents = 655

Rank Change in rank versus 2009

Pfizer and Wyeth [merged in 2009]. 1 unchangedAstraZeneca (AZ). 2 + 6Novartis. = 3 - 1Abbott Laboratories. = 3 + 4Roche [Hoffmann-La Roche]/Genentech. = 3 + 3Johnson & Johnson (J&J). = 5 unchangedBaxter International. = 7 n/aEli Lilly. = 7 - 3Sanofi-Aventis. = 7 +3Merck & Co. = 9 - 6GlaxoSmithKline (GSK). 10 - 2Bristol-Myers Squibb (B-MS). 11 n/aBayer. 12 n/aAmgen. = 13 n/aBoehringer-Ingelheim (B-I). = 13 n/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.



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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 ...

A new approach ...



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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

HealthcareAny person with a new diagnosis faces novel challenges in three of the most-relevant aspects of their lives.

A new approach ...



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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 child’s 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



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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.)

Charts and maps ...



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Charting: categorisation of the informational requirements of patients ...

34 categoriesFor 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.


— Renegotiating relationship with employer.— Renegotiating relationship with work colleagues.— Evaluating new work needs.— Coping with re-tasking.

Work



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Charting: categorisation of the informational requirements of patients ...


— 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.



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Mapping : matching providers of patient information to informational categories ...

Patient groupsTheir patient informational support is different from that produced by the other suppliers of patient information (and is, arguably, more patient-relevant):•They see—and accordingly work from—the 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 vacuum—their facilities depend upon the support of other healthcare stakeholders (such as medical professionals).

Source: PatientView database



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For more information, contact details are:

Dr Alexandra WykeCEO, PatientView

Woodhouse Place, Upper Woodhouse, Knighton, Powys, LD7 1NG, UK

Tel: 0044-(0)1547-520-965

[email protected]

Company number: 3944382

PatientView for patient views

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What Patients Want To Know