Lecture intended for
conference on informed consent,
SYNOPSIS
Between 1968 and 1998, the
Glyncorrwg population provided respondents for 6 major observational studies,
some making high demands on participants such as 7 day total urine collections,
interviews on incontinence, or collection of faeces. We also undertook two major randomised
controlled trials, one entailing reduction of dietary sodium intake by over 50%
for six weeks, the other identification in the top quintile of coronary risk,
then randomisation to warfarin or placebo.
Response rates for all these ranged from 80 to 98%, with a mean 92%. Glyncorrwg men provided the pilot group for
the low-dose warfarin and aspirin trial, staying with it for 12 years.
Some examples of opinion are
given from replies to requests for feedback from both respondents,
non-respondents and drop-outs from the MRC warfarin trial. High response rates had to be obtained and
maintained within a small population, so that the same participants were
recruited several times. Contrary to
research folklore, our high response rates did not depend on exceptional
docility in our population, but on bigger educational inputs, and better
popular understanding of hypotheses under test.
The term “informed consent” is in practice often interpreted to imply that the central aim is to secure consent, with information provided only as a means to that end. The general culture of clinical medicine has only recently, and still incompletely, recognised that patients have brains, and that unless clinicians help them to understand their health problems and options for their solution, and welcome them as co-producers in diagnosis and thoughtful participants in treatment, medical care has little effect on output of net health gain. The same applies to the culture of medical research. If our task is not just to mean well but actually to do well, we must develop more imaginative concepts of the role of participants in population-based research, with more respect for their social knowledge, more appreciation of our own social ignorance, and more confidence in the effectiveness and efficiency of gift relationships.