Principles of patient and public involvement in primary care research, applied to mental health research. A keynote paper from the EGPRN Autumn Conference 2017 in Dublin

Abstract

Clinical research relies on patients being willing to participate in research projects, and making this possible for patients with mental health problems can be a particular challenge. In the modern era, many countries have seen a movement to give a stronger voice to patients both in choices around their care and in how research is conducted. How to achieve effective patient and public involvement (PPI) and to make the patients real partners in this effort is itself a subject of research evaluation. This opinion piece—based on a keynote lecture given at the European General Practice Research Network 2017 autumn meeting in Dublin—describes both the reasons for expanding PPI, how it can usefully be achieved, and how this may relate to the particular context of mental health. There can be moral, methodological or policy reasons for PPI. The three commonest models of good practice in PPI are the ‘one off,’ the ‘fully embedded’ and the ‘outreach’ models. In research into common mental health problems in family practice, ‘outreach’ approaches that minimize commitment over time may work best. ‘Expert patients’ from mental health charities can sometimes play this role. PPI may be challenging and involve extra effort, but the gains for all may be considerable. Wonca Europe networks including EGPRN can extend this message and findings.

Research priorities set by people with OCD and OCD researchers: Do the commonalities outweigh the differences?

“…Beyond, PI enhances the understandability of study information and materials, the feasibility and acceptability of study designs and the commitment of patients if they know that other patients were previously involved. 5,27 Research on specific symptoms of the disease was more relevant to patients diagnosed with Parkinson's (eg balance problems, dyskinesia or cognitive problems) 10 than for the OCD patients involved in our survey. In the future, studies could target the heterogeneous subgroups of OCD (such as contamination, harming, symmetry/ordering, pure obsessions) 20 to clarify differential needs.…”

“…In order to aim for these patient-derived research topics, funding requirements are one means. 5,27 When research agendas are set up together with patients, when study objectives are discussed with patients, and when grant applications require a statement on how patients have been and will be involved, researchers are guided to more PI in their studies. During the survey, one patient asked 'Who is this "research" and when will "it" answer me?…”

Engaging consumers in health research: a narrative review

“…Consumer engagement is the active public involvement in research priority setting, question development, methodological choice and translational inquiry. 7 Underpinning published definitions of CCE in research is language that emphasises research being conducted with or by community members, not research that is conducted on, to or about them. 8 Engaging consumers and communities in health and medical research is now a core goal of both speciality-specific and primary health research communities around the world.…”

“…9,10 Beyond the conceptual alignment of PFCC and evidencebased practice, there are imperatives driving such a fundamental shift in the way best practice in healthcare research is understood and actioned by its practitioners and prescribed by its funders. Howe 7 highlights moral, methodological and policy reasons for CCE in research. In the moral context, the 'nothing about us without us' principle sums up this imperative.…”

“…Although the reasons for a contemporary focus on CCE in research are substantial and persuasive, there remain to date limited examples of published research projects that reflect genuine and robust consumer-provider coproduction. 12 This may be due to a lack of awareness among healthcare researchers as to the potential benefits associated with greater CCE 7 or a lack of clarity about how best to proceed under a consumer-or community-engaged approach. It may also be due to underreporting of CCE-related aspects of published project work, 13 potentially caused by a lack of explicit guidance from journals to authors regarding the inclusion of CCE aspects of projects in submitted manuscripts.…”