The Health Research Authority (HRA) is to be congratulated on its draft guidance to researchers on providing information to participants at the end of the study. The guidance is open for consultation until the end of this month.
It takes a common-sense approach to sharing trial results with study participants. I challenge any researcher not to find a way of giving people access to study results if they so wish, after reading the document.
Two paragraphs in the document struck me as particularly refreshing. The first concerns thanking people for their contribution and states:
‘You should take the opportunity to thank participants for their time and interest and acknowledge the contribution that they have made to research and the improvement of healthcare. It is important that all research participants feel valued and that their contribution has made a difference. This may seem obvious but it is frequently neglected.’
The second encourages researchers to consider asking research participants to become more involved in research after a study finishes. It says:
Invitation to take part in patient involvement
‘There is an increasing requirement to involve patients and public in the design and conduct of health research. Well-structured involvement can lead to more robust study designs with improved recruitment and lower dropout rates. One way of recruiting people to take part in this type of activity is to invite participants as they coming to the end of study to join a patient involvement group to help provide advice on future studies.
Participation in a health research study may have sparked an interest in research and this information sheet offers an opportunity for such patients to be invited to continue their involvement.’
I mean, ‘Praise the Lord.’ At last a research organisation that has cottoned onto the fact that participation might be a route to a more meaningful and productive partnership.