Service user or patient and public involvement (PPI) in research is a widely used term that is often misinterpreted. It is important to distinguish it from service user involvement in healthcare, which is the process whereby service users have a say in the planning and design of how healthcare services are run, or service user participation in research, where service users will typically be interviewed as participants about their opinions on an aspect of their care or health condition.
Service user involvement in research can be defined as:
“Doing research ‘with’ or ‘by’ patients and the public so they are not just participants or ‘objects’ of research. This requires users to have a say in the decisions made about the research, so that the methods and outcomes are more appropriate to research participants and patients”. The National Institute of Health Research (NIHR)
Fuelled by challenges to the medical authority, institutionalised care and changes to the role of patients in policy, service user led research first appeared in the 1980s, when, for example, patient experiences informed HIV and maternity health service development. Since then, there has been a demand for the democratisation of public services, and a social shift to view patients as ‘healthcare consumers’ with a right to be involved in treatment processes.
Service user involvement and public policy
Service user involvement in research is now considered a necessary component of all health research. In 2006, The Department of health set out a new National Health Research Strategy entitled Best Research For Best Health setting out how patients and the public should be involved in all stages of the research process, this includes:
- Priority setting
- Defining research outcomes
- Selecting research methodology
- Patient recruitment
- Interpretation of findings
- Dissemination of results
The INVOLVE programme has also been set-up by the National Institute for Health Research (NIHR) as a National Advisory Group, with the aim of advancing public involvement in research. Service user involvement is now required by an increasing number of research funders such as the NIHR and the Medical Research Council.
How can service users be involved in research?
The most common form of involvement comes at the consultation level, where service users contribute to research by reading study protocols or helping to develop participant information materials. Service users can also be involved at a collaborative level as part of the research process, helping to identify research questions and design projects. Finally, and more rarely, service users can lead research as a Chief Investigator, being the lead applicant on a grant proposal.
Why service user involvement in health research is important
There is an emerging evidence base for the impact of patient involvement in mental health research. Ennis and Wykes (1) conducted a study examining whether patient involvement is associated with study success, and found that research that involved patients to a greater extent were more likely to have achieved recruitment targets. Furthermore, involvement in research has benefits for the service users themselves, increasing social inclusion and promoting wellbeing (2). Service user involvement is also important for developing outcome measures, such as patient-generated quality-of-life (QoL) instruments which capture the individual’s unique perspective and complement standardised tools (3).
What is the level of service user involvement in addictions research?
Although local initiatives have been reported (e.g. Scanbites article on p14 here), there is little published research on the involvement of service users in research in the addictions field. However, as service user involvement is now a requirement in grant applications, ongoing research projects are consulting and collaborating with service users as part of the research process. For example, the alcohol theme of the Collaboration for Leadership in Applied Health Research (CLAHRC) in South London is using service users to help design an app for reducing harmful drinking in young people, as well as providing input into the process of marketing the app to young people and designing social marketing campaigns.
Addictions service user groups exist within the UK, such as the Service User Research Group (SURG) based at the Aurora Project and the Sheffield Addiction Recovery Research Panel (ShARRP). The aim of the group is to build relationships between addiction researchers and service users in order to collaborate on the design of studies, prepare grant applications and ultimately conduct and disseminate the research findings.
The lack of published research on service user involvement in the addictions field suggests that it doesn’t occur as often as in other health areas. There is evidence that involving service users in research can have benefits for both them and the research process. Dedicated practice guidelines for patient and public involvement in addictions treatment research may help to speed up its implementation.
To read the Department of health’s new National Health Research Strategy on service user involvement click HERE.
For more information on the NIHR’s National Advisory Group (INVOLVE) click HERE
1. Ennis L, Wykes T. Impact of patient involvement in mental health research: longitudinal study. The British Journal of Psychiatry. 2013;203(5):381-6.
2. Thornicroft G, Tansella M. Growing recognition of the importance of service user involvement in mental health service planning and evaluation. Epidemiologia e psichiatria sociale. 2005;14(01):1-3.
3. Patel KK, Veenstra DL, Patrick DL. A Review of Selected Patient‐Generated Outcome Measures and Their Application in Clinical Trials. Value in Health. 2003;6(5):595-603.
The opinions expressed in this commentary reflect the views of the author(s) and do not necessarily represent the opinions or official positions of the Society for the Study of Addiction.