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Opaque, translucent or transparent?

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.

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Opaque, translucent or transparent?

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  1. 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

  2. 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

  3. IMPORTANCE OF CAMPAIGNING AND LOBBYING (BAGGOTT AND JONES, 2011)

  4. 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

  5. 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)

  6. 2013 – 160 HCPOs listed by 41 members of ABPI Disclosure... • 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

  7. 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?

  8. 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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