‘Stormy waters or just uncharted’ Monday 17 th September 2007

1. ‘Stormy waters or just uncharted’ Monday 17th September 2007

2. Introduction • AMRC • From below the water to tip of the iceberg • Progress and challenges • Where next for medical research charities? • Citizenship in research • Forging ahead…moving upstream

3. Who we are • Established 1987 • 114 member charities • Total UK research spend on medical research - £791m in 2006/7 • Ambitious, innovative and increasingly assertive • The major external funder for HEI based medical and health research – over 70% of funding awarded goes to UK universities • Now contributing about one third of all public expenditure on medical research in the UK

4. From below the waterline…

5. …..to tip of the iceberg

6. Progress • Active involvement of many thousands of people • Growing evidence of impact and benefit • Growing network of expertise and experience • Emerging models of good practice • Increasing seen as important to delivery – UKCRN • Political buy-in - ‘Best Research for Best Health’ • Pioneering leadership – INVOLVE • On the agenda

7. Pursuing culture change • Strategic leadership and champions • ‘Hearts and minds’ • The lexicon of the research community • Ongoing void in policy-making • Lack of levers or incentives • Financial • PPI criteria for research funders • Research equivalent of ‘Care Record Guarantee’ • NHS Constitution • Research mission of the NHS

8. The paradigm shift Where next for medical research charities?

9. Public giving • 2006 CAF/NCVO figures • 40% donors give to medical research charities • 19% of all public donations go to medical research • Continuing upward trend in public giving in recent years • 24.4% of donors in 2003 gave to medical research charities

10. Harnessing the patient voice

11. Campaigning and influencing

12. Peer Review and patient involvement ‘While it is important to include patient and public opinion, it may be difficult to include them at all times especially for small charities with small research budgets’ ‘Patient/public involvement in research design is unrealistic and, from this charity's point of view, 'patient' involvement would be totally unmanageable’ ‘This would avoid the funding of academic hobby horses that may be irrelevant to patient needs’ ‘Whilst I believe public involvement is important I also realise how difficult it is for this to be implemented properly and one has to ensure it is not tokenism’

13. AMRC ‘Natural Ground’ Project • To establish medical research charities at the forefront of the PPI agenda • Working group and learning set of 15 charities • Aims of project: • to define what public and patient involvement means for medical research charities • to assist medical research charities in developing appropriate models of PPI for their organisation • to establish and facilitate the sharing of good practice among AMRC member charities • to define criteria by which member charities can evaluate the impact of PPI on their research funding activities

14. The paradigm shift Citizen Scientist Research citizenship

15. The Research Citizen • “Membership of a community” • Not for everyone • ‘Mutual society’ • Citizens must be able to do, not just be • The ‘distribution of goods’ is arranged by citizens along three principles • Impartiality • Communal awareness • Relationship by a common history or background • Implies rights and obligations but also duties • Implies an interdependence of future

16. A new politics “Britain needs a new type of politics which embraces everyone in the nation and not just a select few…….a politics that is built on engaging with people and not excluding them, and perhaps most of all a politics that draws upon the widest range of talents and expertise, not narrow circles of power.” Gordon Brown 3rd September 2007

17. Forging ahead…moving upstream