[e-drug] Funding of patient organisations (2)

e-drug
1

E-DRUG: Funding of patient organisations (2)
--------------------------------------------

dear E-druggers,

We are responding to the request (7 February) from Dr Alex Wyke, on behalf of the 'Health and Social Campaigners' Network international' (HSCNetwork International). She asks e-druggers to point her towards any 'Key articles' on the subject of the funding of health campaigners and patient organisations'

We would expect the literature to be thin for two main reasons - one to do with not biting the hand that feeds you, the other relating to coyness or non-disclosure of sponsorship, and uncertainties about the dividing line between independence or not.

The HSCNetwork International itself illustrates something of the problem.

Its website emphasises that 'The network is totally independent. It receives no financing from the healthcare or pharmaceutical industries, or from governments or non-governmental organisations.'

On the other hand, the Network is administered by PatientView (founder and managing director, Dr Alex Wyke), and its main sponsors are listed as: Johnson & Johnson, Lilly UK, Merck Sharp & Dohme Ltd, Ortho Biotech, the UK Department of Health, A.T. Kearney and EDS, and Sudler & Hennessey

E-druggers may be less familiar with the last two names on this list. A.T Kearney is a global management and 'thought leadership' consultancy. Its mission is clear and unequivocal: 'to help the world's leading corporations gain and sustain competitive advantage, and achieve profound, tangible results for our clients.'

Sudler & Hennessey is a substantial healthcare marketing and communications group, 'committed to seeking out solutions and creating opportunities that optimize the success of your brand and market every day'. Moreover, ''Experience has schooled and crafted the S&H process to produce simple, magical strategies with the power to persuade. These are brought to life in the bare elements of brandingiconography, typography, illustrative style, and brand signatureto produce a unique identity that transforms into instant enthusiasm and timeless relevance.''

Alex Wyke would be wise not to assume that no news is good news and that any limited response to her requests for 'pointers' would indicate that all is well.

regards

Charles Medawar (charles@socialaudit.org.uk)
Anita Hardon (ahardon@xs4all.nl)
Co-authors, Medicines out of Control?
UK/Netherlands

2

E-DRUG: Funding of PatientView and patient organisations (3)
------------------------------------------------------------

Dear Dr Medawar, Dr Hardon and all e-druggers,

Thank you for giving us an opportunity to make clear our position on the two
subjects of patient group funding in general and industry involvement in our
work in particular.

Firstly: industry involvement in our work.
You mention a number of companies listed on our website. You describe them
as our "main sponsors", suggesting that we are being continuously funded by
these companies-which is not the case. These companies were sponsors of past
projects. We list sources of funding (even past ones) in the interests of
transparency. To ensure that we maintain our independence and our concern
with transparency, we recently sought advice from three of your respected
colleagues: Margaret Ewen at HAI, Andrew Herxheimer at the Cochrane, and Sir
Iain Chalmers, now of the James Lind Alliance. We hope to have followed all
their valuable advice. One of the key points espoused by Dr Herxheimer is
not to allow industry funding to exceed 20% [A. Herxheimer, BMJ, 31 May
2003]-a precept to which we are continuing to adhere.

Your other point: patient group funding in general.
Your comments of "no news is good news" and "all is well" leads me to
believe that you misunderstand our motives in requesting information on
patient group funding from e-druggers. We know full well that data on the
subject scarcely exists. We seem to be one of the few contributors to the
research on the topic. Issue 6 of HSCNews (April 2004) contained a 57-page
article entitled 'Health campaigners, fundraising and the growth of industry
involvement'-a work that we made available to e-druggers on application (120
requests for the publication came through e-druggers). Our article
scrutinised the published annual reports of 68 campaigning organisations,
interviewed some campaigners and government funding agencies, conducted a
mini-poll of pharmaceutical companies, and quoted our 2002 report on patient
information in the EU. We are about to enlarge and update the April 2004
article in the February 2005 issue of HSCNews. Hence, our request to
e-druggers (though, sadly, we expect very little detailed information to
come forward). Lack of public-domain information on the theme is not a good
thing. That is why we are doing our best to bring the matter out in the open
by publishing detailed analyses of trends among patient group funding.

I would welcome any opportunity to discuss our group and our work with you
face to face. Meanwhile, if you have any information in the area of pharma
and patient funding, I would be interested in including it in the
forthcoming issue.

I hope this addresses most of your criticisms below. And I look forward to
meeting you, hopefully some time soon.

Alex Wyke (alexwyke@patient-view.com)

Health and Social Campaigners' Network International
(HSCNetwork international)
The global virtual network for health advocates
c/o PatientView
Woodhouse Place
Upper Woodhouse
Knighton
Powys, LD7 1NG, Wales
Tel: 0044-(0)1547-520-965
Fax: 0044-(0)1547-528-501
Email:info@patient-view.com
For more information: http://www.patient-view.com/hscnetwork.htm