Opaque, translucent or
transparent?
Defining relationships between UK health consumer and
patients’ organisations and the pharmaceutical industry
Paper presented at:
Pharmaceuticals and Global Health Conference - 19 July 2013.
University of Sussex
Dr Kathryn Jones
1
WHAT ARE HEALTH CONSUMER AND PATIENT’S
ORGANISATIONS (HCPOS)?
“voluntary sector organisations that seek to promote
and/or represent the interests of patients, users,
carers, and the wider public in the health policy
arena” (Baggott and Jones, 2011)
• Condition based groups e.g. Breakthrough Breast Cancer,
MS Society
• Population based groups e.g. Age UK, Patients Association
• Formal Alliance Organisations e.g National Voices, Neurological
Alliance
2
IMPORTANCE OF
CAMPAIGNING AND
LOBBYING
(BAGGOTT AND JONES, 2011)
Importance of campaigning or lobbying
on issues relating to:
(n)
% identifying as
‘very important’
or ‘fairly
important’
Access to care and treatment
89
83
Patient experience (quality of care)
87
81
Patient support (social care, carers’ issues)
79
74
Public health
66
62
3
WHY DO HCPOS WORK WITH / ACCEPT FUNDING FROM
PHARMACEUTICAL INDUSTRY?
• HCPOs concerned with access to
effective treatment
• Financial support for HCPO activities
• Develop mutual understanding
4
HOW DO HCPOS MANAGE THEIR
RELATIONSHIPS WITH INDUSTRY?
•
Diabetes UK: “Diabetes
UK’s policy statement
Ethics of working
relationships outlines
how we approach
relationships with
corporate partners to
ensure clarity and
openness for all our
stakeholders.” (Diabetes
UK website 2013)
•
MIND: Our broad
base of funding from
the public, from trusts
and from companies
- but never
pharmaceutical
companies - gives us
integrity. It means we
can stand up and
speak out on the
issues that matter.
(MIND website 2013)
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DISCLOSURE...
2013 – 160 HCPOs listed by 41 members of ABPI
• 65 percent (n=104) of HCPOs known to
receive industry funding acknowledge support
• Only 28 percent (n=44) of groups state they
have a policy covering their relationships with
pharmaceutical/medical devices industry
6
IS DISCLOSURE ENOUGH?...
• What do we mean by transparency?
• Is money from industry the same as
other corporate donations?
• Is any funding source free from conflict
of interest?
• Are relationships really in the public
interest?
7
REFERENCES
• Baggott, R.; Jones, K. (2011) Prevention better than cure?
Health consumer and patients' organisations and public health.
Social Science and Medicine, 73 (4), 530-4.
• Jones, K. (2008) ‘In whose interest? Relationships between
health consumer groups and the pharmaceutical industry in the
UK’ Sociology of Health and Illness. 30 (6) 929-944.
• Baggott, R.; Allsop, J.; Jones, K (2005) Speaking for Patients
and Carers: Health Consumer Groups and the Policy Process
(Palgrave). Short listed for Sociology of Health and Illness 2006
Book Prize.
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