There is an awful lot of medical research. Publications increase each year and at any one time members from several university departments are in the air travelling to medical conferences around the globe. But does this do any good? New drugs are increasingly rare and in mental health, there have been few real advances within the last twenty years. Medical research is increasingly seen as irrelevant to real life problems, so much so, that a new discipline of “knowledge translation” has been invented in order to explain just how research is relevant. Publication in highly profitable medical journals is problematic. Elsevier has profit margins of 39% with most of that coming from public money via University libraries. With bias in what does get published, publicly funded research is hidden behind paywalls and unpaid peer reviewers are providing idiosyncratic opinions. Problems of conflict of interest result from authors receiving lucrative advisory or speaking contracts with pharmaceutical companies.
So what can we do about this? There already have been some responses to this such as: the standardized reporting of trials or the compulsion to register trials prior to their starting so that publication bias becomes more obvious. Another response which has so far received less attention, at least within the context of North America, is the explicit involvement of patients and caregivers in medical research as instigators and collaborators of studies. The benefits are immediately obvious. Having service users and caregivers involved, means that relevant questions get asked and outcomes that are important to patients are included in trials. Also, people who experience ill health are often experts on their own condition and are certainly experts in navigating the complicated Canadian healthcare system.
The slogan adopted by the National Health System in the UK proclaims “nothing about us without us.” This indicates the importance of involving service users and their caregivers in the planning and delivery of health services. The financial levers are now being put into place that will encourage researchers to include people with lived experience. The Canadian Institute of Health Research is now promoting a strategy for patient orientated research. However, service users and caregivers face significant barriers to getting involved. There are few places where people with lived experience encounter researchers on anything like an equal footing. The way in which research is funded is confusing to outsiders especially when there are a plethora of hospitals, research institutes and universities all competing for the same research dollar; and when service users and caregivers actually meet researchers it is sometimes difficult to prevent this being just a token exercise.
Real change will mean sharing of power. This will mean that researchers will have to actively get out and engage with patients and institutional measures need to be put in place to encourage this to happen. Such changes may mean ethics committees insisting that there is a patient and caregivers representative on all applications; interview committees for new researchers include service users; and research committees including in their terms of reference provisions for service users and caregivers. The big change in early 21st century health care system is the sharing of knowledge that used to be exclusive to professions coupled with the design of health care systems with users at their core to ensure the integration of research and excellent clinical care.
And a relevant meeting in Ottawa:
Sign up today to attend the Service Users and Caregivers Research Interest Group event on Thursday, April 16th: