How to involve patients in research

The National Institute for Health Research expects grantees to use the public to help review and evaluate their work. Simon Denegri, chairman of Involve, the NIHR-funded national advisory group supporting public involvement in NHS, public health and social care research, explains what public involvement means for researchers.

Public involvement in the design and delivery of research is an increasing priority for funders. Many medical charities have recently established systems for public involvement in the peer review of their grant programmes. A number have also adopted models such as the James Lind Alliance Priority Setting Partnerships, to bring together patients and clinicians to set research priorities. PSPs are now managed by the institute’s Evaluation, Trials and Studies Coordinating Centre, NETSCC, a clear nod of approval from NIHR that this work has value. And PSPs are increasingly cited by applicants for funding.

There are many different drivers for the rapid emergence of this agenda. Austerity has certainly pushed public involvement up the agenda since it enables organisations to become more accountable to their beneficiaries. Public involvement in research design can also bring efficiencies in terms of delivery; patients are often able to provide a reality check on what is viable out in the field when it comes to something like a clinical trial. Meanwhile, the Research Excellence Framework’s focus on impact has brought it to the fore, with recent initiatives such as Research Councils UK’s Concordat for Engaging the Public with Research providing further momentum for this activity to become a serious focus of attention for vice-chancellors and senior academics.