Patient and public involvement in basic science research—are we doing enough?

In the past decade, medicine has seen a dramatic shift: from a paternalistic approach to one in which patients and clinicians make shared decisions. In parallel, there is a drive for greater involvement of patients and other members of the public in medical research—not just as passive participants in research, but as active contributors to its conceptualisation, design, delivery, and dissemination.

Funding bodies recognise the importance of patient and public involvement (PPI), with the National Institute for Health Research making it a core principle of its business and many funders now requiring grant applications to demonstrate patient involvement. There are many examples of good practice where researchers have worked in partnership with patients, identifying relevant research questions, developing appropriate research tools, and disseminating findings back to the patient community.

Even though PPI in clinical research is becoming more commonplace, it is harder to find in and more sparsely integrated with basic science, laboratory based research, or true “blue sky” thinking. If PPI is on the rise and its importance has been recognised by many, why is it still lacking in these areas and why do we care? Is there a perception that it is harder, if not impossible, to involve lay people in complex scientific settings, where discoveries may be many years from practical application? Or is there just as much of an argument to involve potential end users and the lay public in the early stages of basic research?

Basic science research is often the bedrock on which scientific discovery is made and therefore an early stage at which to influence research priorities. It is also important that basic science research translates into healthcare solutions that meet public and patient expectations. Furthermore, it is important that the research that ultimately goes into improving their lives is accessible and acceptable to patients.

If you look carefully, there are examples of laboratory based scientists doing PPI. Matt Murray from the Alzheimer’s Society explains more: “One basic research project in dementia has included from the outset three Alzheimer’s Society Research Network volunteers (who) suggested a clear and understandable project title and through dialogue and questioning encouraged the researchers to think about how they can improve their experiments.”

There are also examples of PPI in research priority setting exercises, which have generated questions that patients and families want basic science research to address. For example, questions from patients and the public through the James Lind Alliance Priority Setting Partnership have included “Can stem cells be used to improve palate repair?”, “Does stem cell therapy result in better outcomes after spinal cord injury?”, and “Is a genetic (molecular) diagnosis possible for all inherited retinal diseases?”.

So what are the barriers to the full integration of PPI in basic science research? Firstly, those involved in basic science research, especially at the laboratory bench level, need to understand the reasons mentioned above for engaging in PPI over and above the requirement to include it in grant funding applications. Conversely, PPI should not stifle inventiveness at the fundamental level, sidetracking research that could be potentially of use in years to come.

There is a wealth of information (although more robust evidence is needed) about the benefits that the lay public and patients can bring to research and it is important that we remember this. This is also heard firsthand from researchers, such as those at the Alzheimer’s Society, who say “Our researchers tell us that involvement brings focus and context to their research . . . and provides good practice for their lay communication skills, opens up public engagement channels, and emphasises the reasons why they are doing the research.”

Some researchers might assume that patients may be put off engaging in basic science research due to finding science boring, irrelevant, or intimidating. This is, however, not true, with members of the public keen to engage with research at the basic, fundamental level, as highlighted in a recently commissioned study by the Babraham Institute and supported by the BBSRC and Sciencewise. As a scientific community, we should therefore be developing new and innovative ways of involving them in basic science. This will require the translation of scientific concepts into easy to understand ideas for the non-scientist, in a similar way to the idea behind FameLab.

While PPI has been gathering pace over the past decade, particularly in clinically oriented research, PPI in basic science and “blue sky thinking” is far further behind. This article therefore calls to arms the legions of basic science researchers and those involved in PPI to openly discuss the needs and challenges of PPI in these settings so that we can ultimately improve the quality of care that is offered to patients worldwide.

tom_dobbs_picTom Dobbs is a plastic surgery registrar and Welsh Clinical Academic Training (WCAT) fellow. He has a keen interest in public and patient involvement in research and innovation within medicine and the life sciences.

Competing interests: Tom Dobbs has no conflicts of interest to declare.

Iain Whitaker is professor of plastic and reconstructive surgery at the Welsh Centre for Burns and Plastics and founder of the Reconstructive and Regenerative Medicine group at Swansea University. He is deputy editor of the Journal of Plastic, Reconstructive and Aesthetic Surgery.

Competing interests: Iain Whitaker has no conflicts of interest to declare.

Note: This article has been written with advisory input from Sophie Petit Zeman and Katherine Cowan.