Patient involvement in research boosts study success
Involving patients in the design and implementation of research programmes increases the likelihood of studies recruiting to target, according to a new study by King’s College London.
Delays in recruitment are a major reason why some studies fail, so better recruitment means studies are more likely to be successful and run on time and budget. The authors argue that researchers need to involve patients more comprehensively in research.
Published in the British Journal of Psychiatry, the researchers analysed 374 studies registered with the Mental Health Research Network (MHRN).
Studies which included collaboration with service users in designing or running the trial were 1.63 times more likely to recruit to target than studies which only consulted service users. Studies which involved more partnerships - a higher level of Patient and Public Involvement (PPI) - were 4.12 times more likely to recruit to target.
Professor Til Wykes, senior author of the paper, Director of the MHRN and co-Director of the Service User Research Enterprise (SURE) at the Institute of Psychiatry (IoP) at King’s says: “The aim of Patient and Public Involvement is to improve the quality, feasibility and translational value of research. At the individual level, we know that being involved in research promotes social inclusion and provides a sense of wellbeing for patients, but this is the first time we can see that patient involvement in research is linked to higher likelihood of reaching recruitment target – and as a result, study success.
“We have witnessed a slow change in the past 20 years – from seeing patients as ‘subjects’ to ‘participants’, but there is much more that can and needs to be done to ensure patients are given an active voice in every step of the research process.”
Liam Ennis, researcher at SURE and co-author of the paper from the IoP at King’s says: “Our findings suggest that mutualism between service users and investigators is not just an ideal, but is associated with tangible recruitment benefits. Investigators may reap these rewards whilst encouraging skin-deep patient involvement to become a thing of the past.”
Commenting on the research, Professor Dame Sally C. Davies, Chief Medical Officer and Chief Scientific Adviser at the Department of Health said: “I welcome this MHRN study. The findings add to the growing evidence of the role that public involvement plays in the effective delivery of clinical research. Our vision from the outset of the National Institute for Health Research has been to develop a strong partnership with patients; one which adds value to what we do. MHRN has played an integral part in this. Having laid such strong foundations, I hope that we can use the emerging evidence to perfect models of public involvement in keeping with our position as a world-class research funder.”
The IoP at King’s has an established history of PPI. Set up in 2001, SURE undertakes research to test the effectiveness of services and treatments from the perspective of people with mental health problems and their carers, by collaborating with them throughout the research process, including design, data collection and analysis as well disseminating results.
Patient and carer participation is also at the heart of the National Institute for Health Research Biomedical Research Centre for Mental Health (NIHR BRC) at the South London and Maudsley NHS Foundation Trust (SLaM) and King’s College London with a dedicated patient and carer participation theme meaning research is led and managed by patients.
The MHRN is part of the NIHR and helps facilitate mental health research within the NHS. One of its key priorities is to increase involvement of patients and their families or carers in research – beyond taking part as participants.
Read the BRC Blog by Professor Til Wykes: Developing best treatments means patient involvement every step of the way
Paper reference: Ennis, L. et al. ‘Impact of patient involvement in mental health research: longitudinal study’ British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818
For further information, please contact: Seil Collins, Press Officer, King’s College London, Institute of Psychiatry. Tel: (+44) 207 848 5377 or email: seil.collins@kcl.ac.uk