Making patient relevant clinical research a reality
BMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i6627 (Published 23 December 2016) Cite this as: BMJ 2016;355:i6627
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- Correspondence to: S Crowe sally{at}crowe-associates.co.uk
Clinical research aims to improve the knowledge base in the prevention, treatment, care, and cure of disease while delivering good value for money and avoiding research waste.1 However, a wide gap exists between what generally receives funding and what patients, carers, and the public would like to see examined.2 3 4
There is, of course, a moral imperative to understand the priorities of those who may benefit from research. But incorporating patient perspectives more thoroughly into clinical research would also broaden its scope and help answer the research questions likely to bring about the biggest improvements in our understanding of disease.
Several problems underlie our current inability to make research relevant to patients and the wider public. Most importantly, research is a power rich and hierarchical environment in which successful clinical researchers are at the top and patients, carers, and the public are viewed as passive beneficiaries at the bottom. These power dynamics and the status quo make it difficult for research ideas led by patients to gain acceptance, even when they may offer greater benefit to patient wellbeing. There is increasing evidence, for example, that the “brain fog” associated with cancer and its treatment is a real and often distressing phenomenon for patients, although researchers and clinicians rejected this symptom for decades.5 6 7
A second problem is that research questions prioritised by patients often seem unexciting to researchers and research funders. This is compounded when the interventions evaluated to answer patients’ questions are generic and considered unprofitable by industry. Cancer research, for example, is dominated by expensive trials of expensive drugs but, particularly for those with metastatic cancer, these drugs often have little effect on the outcome that really matters—overall survival. 8
Supportive care improves quality of life and may extend it.9 If adequately researched, it might provide greater benefits, but it is much less well supported by industry.
Consult the experts
Many patients become knowledge experts in their health conditions, as well as technical experts in self care and monitoring symptoms. Research systems would be stronger if we were able to tap more consistently into this mine of expertise. To do this successfully, researchers will need to acquire the skills needed to work effectively with patient communities, while funders will have to explore more patient centred ways of allocating funds.
Generally speaking, the research community has struggled to prioritise and fund questions that matter to diverse stakeholders, including patients. “We cannot find patients to work with” is a common refrain, but advances in technology are making such arguments obsolete. Online communities of patients exist all over the globe, many of which are keen to engage with researchers (see, for example, patientslikeme.com). The potential of relationships between clinical researchers and patients via online systems has yet to be realised. Initiatives such as the James Lind Alliance, which brings together clinicians, researchers, patients, and carers, have an increasingly vital role if the mismatch between clinical research and patient priorities is to be resolved.
Funders of clinical research also have a key role. All too often funding allocation focuses on the “comfort zones” of the design of research protocols and the experience and competence of the applicants rather than on the patient relevant components of research. While the expertise and methodological rigour are vital, they should not be considered in isolation from patient priorities.
Many funding agencies, including the UK’s National Institute for Health Research, now ask researchers to explain how patients and the public are included in the research, from problem definition to dissemination of findings. This is an important first step, but funders should now develop clear guidelines to help drive up the standard of patient involvement. The approaches described by researchers applying for funding are often weak, and currently there is little room for review, appraisal, and feedback to applicants about how to do it better. Linking funding with explicit and well conducted patient involvement would be a powerful incentive.
Finally, a powerful message about the need for patient relevant clinical research will come from publishers. The BMJ already insists that all submitted research includes a statement describing how the authors did or did not involve patients. The journal also operates a system of patient peer review. If other medical journals follow suit, the message about patient relevant research is more likely to be heard. Coupled with a greater emphasis from funders and better approaches to working with patients among researchers, this has the potential to bring about real and meaningful change in the way in which research is developed, designed, and reported.
Footnotes
Competing interests: We have read and understood BMJ policy on declaration of interests and declare that SC is the director of a commercial company that advises third parties on patient and public involvement in health services and research. CG has done paid consultancy work on patient involvement for various commercial and non-commercial organisations. SC and CG are members of The BMJ’s patient panel.
Provenance and peer review: Commissioned; not externally peer reviewed.