Researchers should ignore the views of patients (?!!) Dr Mark Welfare, Senior Lecturer, gastroenterologist, researcher, occasional patient/carer
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?’
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
What is research for?
This may depend on your role in the process
Improve patient care
Further basic understanding of science
Improve population health
Obtain funding/spend funding
Maintain UK plc competitiveness (Gordon Brown)
Where is the money spent now
Industry 5 billion, charities 650 million, Government 1.7 billion
UKCRC study of £950 million
Basic science 34%
Treatment development and evaluation 16%
Detection, screening, diagnostics 5%
Health service delivery 5%
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
NHS priorities seem to be costs and waiting times
‘ Publish or die’ influences researchers’ priorities
‘ 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
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.
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).
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
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.
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.
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.
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
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?
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
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!
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
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
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