We need person centred research for person centred careBMJ 2019; 364 doi: https://doi.org/10.1136/bmj.l405 (Published 30 January 2019) Cite this as: BMJ 2019;364:l405
- Matthew Lariviere, UKRI innovation fellow
- Centre for Research on Care, Labour, and Equalities, University of Sheffield, UK
Last year, my local haemophilia treatment centre invited me to take part in a clinical trial for a new drug. This would involve administering subcutaneous injections every week that should help prevent bleeds from starting without affecting my immune response to the drug. It would mark a switch from an “on-demand” to a prophylactic treatment for my haemophilia and potentially halt the build-up of scar tissue from a lifetime of intravenous treatment.
After the initial phone call from the research nurse, I got the participant information in the post. I was dismayed that this “information sheet” was 45 pages long and written in language that was often too detailed, with inappropriate scientific jargon.
The methods of the study did not dispel my despair. Participants needed to …