By Sophie Petit-Zeman,
What does medical research mean to you? Scientists in lab coats wielding test tubes, a whirring scanner, or perhaps the chance to join a clinical trial assessing whether a new drug is effective?
You might reasonably reply “all of the above”, and feel you lack the knowledge or expertise to go much further. You don’t know what’s in those test tubes, or quite how their contents might help fight cancer – that’s the researchers’ job. You hope the scanner might successfully probe the workings of the brain and illuminate new ways to tackle diseases such as Parkinson’s or Alzheimer’s, but it’s up to the experts to piece together the images that the mysterious machine produces.
At the National Institute for HealthResearch (NIHR) Oxford Biomedical Research Centre – a partnership between Oxford University Hospitals NHS Trust and the University of Oxford that is investing £100m in research – we are challenging the idea that patients and the public lack the expertise to become active partners in medical research.
Isn’t there an argument for saying that if researchers alone make decisions about what research to do and how to do it, they might miss something? Whereas if you involve patients or carers – those who know the everyday reality of a given condition – you will create projects that are more relevant to them and deliver the benefits they desperately want?
“Patient and public involvement” (PPI) is complex, and not all are convinced that it’s a good idea. As one researcher challenged, patients lack “useful opinions about the directions research should take,” while some patients simply want the “experts” to tackle research.
However, good PPI recognises the skills of researchers (many of whom are also clinicians treating patients on a daily basis) while promoting equal partnerships with those whose experience is integral to research.
The relatively new science of PPI received further impetus from the Health and Social Care Act 2012 which embedded research in the NHS and gave a greater voice to patients. Its consultation “Liberating the NHS: no decision about me, without me”, is as relevant to research as it is to care.
At the NIHROxford Biomedical Research Centre we are making this a reality through a broad range of projects. We have launched two James Lind Alliance priority setting partnerships, bringing together patients and carers with doctors and other health professionals to identify the key questions research teams should tackle. These currently focus on hip and knee replacement and spinal cord injury, but are soon set to cover other conditions.
Our PPI programme will be guided by the Patients Active In Research Group, comprising researchers, medical staff and patients, for which we are currently seeking new members and a lay co-chair.
We are also working with partners across the region to create a new website – provisionally called “Patients in Research in the Thames Valley” – where opportunities for involvement will be promoted. Creating this site is the perfect opportunity to gather information on what is already happening locally, where, for example patients are sitting on research committees, reviewing plans for clinical trials and helping to write leaflets explaining studies to potential participants.
We are supporting work to ensure we access views from a broad range of patients, exploring the ethical issues that surround it, and are soon to appoint a research fellow to evaluate the impact of PPI on research for patient benefit.
At its best, PPI is challenging. It raises questions, involves people with different perspectives and sometimes conflicting opinions. And at its best, PPI creates partnerships that maximise the potential for research to be built on all available expertise, including that of patients and the public.
Sophie Petit-Zeman is director of patient involvement in research at The NIHR Oxford Biomedical Research Centre. She will be giving a public talk on PPI at the Nuffield Orthopaedic Centre, November 21,, 6.30pm. For more details on PPI opportunities email [email protected]