1. Researchers should ignore the views of patients (?!!) Dr Mark Welfare, Senior Lecturer, gastroenterologist, researcher, occasional patient/carer

2. Should patients tell researchers what to do and if so, how? My assumption is that my title is preposterous and therefore the first part of the question is answered. The important question, and its reciprocal, then becomes –‘How can patients/the public influence researchers?’ –‘How can researchers know who and what to listen to?’

3. Mapping my talk What do we mean by research? Some observations about patient views Review some methods of patient involvement Suggestions for patients and researchers Summary

5. What is research for? This may depend on your role in the process –Improve patient care –Further basic understanding of science –Improve population health –Career promotion –Obtain funding/spend funding –Gain influence –Maintain UK plc competitiveness (Gordon Brown) –Good headlines –Profits

6. Where is the money spent now Industry 5 billion, charities 650 million, Government 1.7 billion UKCRC study of £950 million –Basic science 34% –Aetiology 34% –Prevention 2.5% –Treatment development and evaluation 16% –Detection, screening, diagnostics 5% –Health service delivery 5%

7. Current research environment Centralisation of effort Fewer academics, fewer NHS doctors involved in their own research Less involvement of day to day clinicians Increasing large scale commercial drug trials Increasing bureaucracy NHS priorities seem to be costs and waiting times ‘Publish or die’ influences researchers’ priorities

8. Researchers viewpoint ‘Well how can we ask patients about their views if we have not educated them before’ Who to listen to, don’t want to get hijacked Already plenty of other people to satisfy – employer, funder, research network, ethics, journal editors, department

9. So, what do we know so far about patient views Not a lot! JLA review found only 6 publications comparing patient and researcher priorities and <150 reporting patients views overall Even fewer studies have looked at variation in opinion between patients Patients are varied and don’t all agree amongst themselves.

10. Previous studies Have shown considerable mismatch between patients and researchers Greater interest in educational initiatives and physio, rather than drugs and surgery, in rheumatological conditions and in researching associated symptoms such as fatigue and general well being (Tallon 2000; Kirwan 2005).

11. Themes generated in a local study in patients with ulcerative colitis finding the cause of colitis cure of colitis prevention of colitis living with colitis treatment and its side-effects (conventional, complementary and surgical) control of particular symptoms information about colitis communicating with health professionals service delivery.

12. Our study of patients and researchers in colitis using Q sort methodology Q sort was a very interesting way to sample opinion and enabled ranking of priorities Five ‘types’ of view were identified, such as ‘care not cure’, ‘medical model’ ‘academic viewpoint’, ‘patient empowerment’. Views of professionals and patients are both overlapping and different. Patients fall into very different groups. Gives an idea of complexity of the issue.

13. Factor 1 Academic views – interest in developing new frontier of knowledge 6 health professionals and 3 patients mapped to this factor. Priorities were cure, cause & prevention which involved modifying genes and understanding the role of genes. Unimportant was research into service delivery such as understanding access to care and what factors influence this and lifestyle factors such as diet.

14. Factor 3 – Medical Model Group 14 patients loaded on this and only one health professional. They express trust in Drs, want to improve medical care. They value research into cure, prevention and cause but want the results available in near future and put into practice quickly. Want research into improving symptoms, effective medication and medical care. Negative statements were about research into self help, improving social problems, raising awareness and research which took ten years or more.

15. Patient influence The art then is to use all these drivers to influence the many different stages of the process and overcome some barriers Aim to influence all stages and all players in the research process, not just confine efforts to researchers

16. Current models Patient representatives at board level Consultation panels or groups Primary research into patient views Examine treatment uncertainties and develop DUETs Patient organisations fund research – how do they assess patient views?

17. Lateral thinking Develop a usefulness quotient or structured review system for papers based on factors important to patients (e.g. timeline, non-invasiveness, patient control, lack of side-effects, originality) and feed back to authors and journal editors – the counterpoint to peer review

18. Cautions Patient ‘representatives’, ‘expert patients’ Representativeness of organisations Patients are not the public – children’s cancer effect Our study using focus groups suggested that most patients wanted self help groups but when organised, few patients wanted them – methodology was biased towards patients who attended groups!

19. For academics The vast sums spent on basic research could dry up if more results are not seen soon and if the research community moves out of step with public opinion e.g. cow human hybrids, Northwick Park incident Democratisation of research should therefore be a key goal of the next 20 years We need a two way dialogue

20. For Academics In: Start to develop robust and accurate methods for interacting with patients and start listening more Out: Develop better means of explaining what science is doing and where we are going and the limits of possibilities Example: what are the potential benefits of ever more powerful immunological therapies in inflammatory disorders such as colitis and arthritis

21. Summary NHS, government and industry want to further pharmaceutical trials Proportion of budget spent on educational and psychological interventions, prevention and health service issues is low but they appear to be highly valued by patients Patient views are complex and likely different from the public Researchers have some incentives for involving patients but also many barriers