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.
Relevant Websites:
And a relevant meeting in Ottawa:
Sign up today to attend the
Service Users and Caregivers Research Interest Group event on Thursday, April
16th:
