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 1

2. W HAT ARE H EALTH C ONSUMER AND P ATIENT ’ S O RGANISATIONS (HCPO S )? “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

3. 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 treatment8983 Patient experience (quality of care)8781 Patient support (social care, carers’ issues)7974 Public health6662 3

4. W HY D O HCPOS WORK WITH / ACCEPT FUNDING FROM P HARMACEUTICAL INDUSTRY ? HCPOs concerned with access to effective treatment Financial support for HCPO activities Develop mutual understanding 4

5. 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) H OW DO HCPO S MANAGE THEIR RELATIONSHIPS WITH INDUSTRY ? 5 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. D ISCLOSURE... 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 2013 – 160 HCPOs listed by 41 members of ABPI

7. I S 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

8. R EFERENCES 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. 8