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Dec
2
2013

Does service user involvement in research make a difference?

A major interest of the McPin Foundation is how service user and carer involvement in mental health research, reaching beyond taking part as participants, improves any project. It is a topic that is of interest to research funders as well, with programmes of research being commissioned by the NIHR to answer this question. Building an evidence base is crucial.

In September 2013, the British Journal of Psychiatry published a longitudinal study investigating change in the level of user-involvement over the lifetime of the Mental Health Research Network (Ennis & Wykes, 2013). Using data collected by the network on all portfolio studies between 2004 and 2012 (n=374), the researchers have investigated practical benefits of user involvement including recruitment success, and monitored different levels of involvement. Interestingly, it was studies funded by the “charity / not for profit sector” that highest levels of user involvement in studies. We suggest this aligns to the important values base of the third sector and why it’s important that there is a strong charity presence in commissioning mental health research – and thus funding it. Service user involvement was also highest in studies that investigated development disorders, personality disorders or social interventions. Are there some kinds of research that should be exempt from PPI? We suggest not but as others point out exploring models of PPI critically (Ives et al 2012) is vital for increasing its credibility and authority.

The second important finding from Ennis and Wykes (2013) was that higher levels of recruitment success, defined as reaching 90% recruitment target, were more likely to be achieved by those studies with higher levels of user involvement. The complexity of a study and the type of study also contributed to recruitment success but the level of user-involvement showed an independent association over and above these other factors.

They did not include commercial studies. It is not clear why these were excluded, though it may be because of low numbers of such studies on the portfolio and different assessment criteria including possibly how service user involvement is rated. It would be useful to know what level of user involvement existed in mental health commercial studies.

What does this mean for user involvement? This work is extremely important for the promotion of user involvement in mental health research. The study used detailed longitudinal data on involvement in mental health research, collected using a standard proforma through the MHRN adoptions process. They not only show that the amount of involvement is increasing, suggesting that involvement is gaining a more substantive position in research, but that tangible practical benefits are being realised for mental health studies through these approaches. That involvement helps with recruitment should not come as a surprise. Tailored communications are vital for motivating people to get involved in any activity and no more so than in research which can be emotionally gruelling, intrusive, physically demanding, risky and difficult to arrange.

What this research paper also demonstrates is the importance of systematic record keeping. The authors acknowledge that more detailed information about studies would overcome some limitations to their research by allowing for the consideration of other potential barriers or facilitators to involvement such as the quantity of funding and study methodology. More detailed record-keeping would also allow for further research into why involvement is associated with recruitment success and may identify other practical benefits of involvement to the people involved as well as the research study. It is our experience that those involved in PPI benefit as do members of the research team from shared expertise and skill building.

The McPin Foundation is keen to support the development of PPI in mental health research and encourages debates to develop conceptual robustness for user involvement in research alongside other established agencies such as INVOLVE. Our next steps are to establish a dedicated service user research programme within our charity. More information will be available in the New Year.

References

Ennis, L. & Wykes, T. (2013). Impact of patient involvement in mental health research: longitudinal study. The British Journal of Psychiatry, 203, 1 – 6. http://bjp.rcpsych.org/content/203/5/381.full.pdf+html

Ives, J. Damery S. & Redwod S (2012) PPI, paradoxes and Plato: who is sailing the ship? Journal of Medical Ethics, 39 (3), 181 – 185.