By Celine Cammarata
Many of us doing biomedical science never really see patients, the very people our work will hopefully one day help. But what if we did – what if those individuals who will eventually be using our research on a daily basis were in fact involved in the work from the start? How would research change?
This is the concept underlying the movement toward Patient and Public Involvement or PPI, a title that (logically enough) refers to efforts by researchers and institutions to engage patients and members of the public in the process of biomedical research and, in doing so, fundamentally change the way scientific information is created and disseminated. Traditionally, the flow if information between science and society was seen as relatively unidirectional, with researchers passing scientific knowledge down to an uninformed, receptive public. More recently, however, there has been a growing recognition that information flow from the end-users of research back to investigators is also critical.
One way to accomplish this is to directly incorporate those users – broadly defined as patients, caregivers, members of the public rather than clinicians or practitioners – into the research process. A prominent definition of PPI is “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (INVOLVE). Individual instances of PPI can be quite variable, though most engage users in some form of advisory role, often through interviews, surveys, focus groups, and hosting users alongside researchers on regularly-meeting advisory groups (Domecq et al., 2014). PPI is represented at all stages of research, from inception of project ideas through the data collection process to implementation of findings and evaluation and is most prevalent in research that is either directly related to health or social issues and services.
A primary driving force behind PPI is the belief that input from users will push research toward questions that are more relevant to those users. Individuals with first-hand experience of an illness or other condition are thought to hold a particular kind of expertise and therefore able to craft more immediately relevant research questions than an academic investigator in the field might.
One important stage at which patients and the public are having an impact is by working with funding agencies to establish research priorities. For instance, the UK’s NHS Health Technology Assessment program involves users alongside clinicians and researchers in the development and prioritization of research priority questions. Members of the public were engaged in several different stages of the process, from initial suggestion of research ideas through to selecting topics that would be developed into solicitations for research. Analysis revealed that overall these lay members exerted an influence on the research agenda approximately equal to that of academic and clinical professionals (Oliver, Armes, & Gyte, 2009).
PPI can also increase the relevance of individual studies, with specific examples including: users of mental health services shifting outcome measurement in a study of therapies to improve cognition away from psychological tests in favor measuring performance on daily activities; the investigation of environmental factors such as radiation, which researchers originally considered negligible, in a study of breast cancer; and the development of new assessment tools to measure the mental and psychological condition of stroke victims in a study that initially planned to focus only on physical health outcomes (Staley, 2009).
Users may express particular suspicions or hunches about their condition that they believe should receive further investigation, may increase pressure on investigators to clearly state how their work will contribute to the public, and may challenge whether a project is even conceptualized in a way relevant to those who experiencing the situation in question, helping to determine whether a research problem is truly a “problem” at all. An excellent example of the impacts of PPI in research commissioning is the Head Up project, an entirely user-driven project in which patients with motor neuron disease working with one of the CCF programs pushed for research on an improved supportive neck collar.
PPI may also help increase the up-take of research findings because user’s are generally able to relate to and communicate with other users and practitioners in a uniquely meaningful way. Patients and members of the public may help to write up study findings, present at conferences or, importantly, bring findings directly to the user community.
Of course, nothing comes without a cost. A number of challenges in conducting PPI have consistently been identified, including: insufficient time and funding; tension over roles on the project and difficult relations between academic researchers and users; lack of training for both users and researchers; and a tokenistic attitude toward PPI on the part of investigators. Still relatively little is known about the precise effects of PPI or best practices. However, these are active areas of scholarship. Also of note is the relative lack of PPI in basic science research; PPI is predominantly relegated to applied health and social research. An important step in furthering PPI would be to establish who the “users” of basic research are, whether PPI in basic research is likely to be beneficial, and how the practice could be implemented.
Overall, it is clear that the end-users of research can be incorporated into setting the research agenda, designing studies and communicating results, and suggests that such user engagement can increase the relevance of research and the dissemination and adoption of findings.