Readers of this journal are well placed to reflect on the highs and lows of receiving grant funding. I am recalling a respected pediatric oncologist offering me encouraging words when in the midst of a grant application, saying, “You stand a better chance of getting a grant when you submit to the call than if you didn’t!” Disappointment or success is not my focus here. Rather, my focus is on how research priorities described by healthcare professionals, with and without the inclusion of the voice of their respective patient groups, influence research undertaken in our various cancer populations.
Iain Chalmers,1 a UK health services researcher, a founder of the Cochrane Collaboration, famously challenged researchers in 1995 (p1318) by stating, “Greater lay involvement in setting the research agenda would almost certainly lead to greater open mindedness about which questions are worth addressing.” He went further with others in 2005, to suggest that there was indeed a mismatch, where “the uncertainities rated important by clinicians and patients are often not those being addressed in research.”2(p232) He worked with like-minded individuals to address this mismatch through the development in 2004 of the James Lind Alliance (JLA) research Priority Setting Partnerships (PSPs).3 These partnerships are where patients, carers, and healthcare professionals come together and, using a systematic approach, develop, and agree on shared priorities for research, questions important to a particular health condition, a treatment uncertainty, or, in our case, a patient population (http://www.jla.nihr.ac.uk/priority-setting-partnerships/teenage-and-young-adult-cancer/). There are currently 99 PSPs listed on the JLA website, of which 12 are cancer related (http://www.jla.nihr.ac.uk/priority-setting-partnerships/). The outputs from these partnerships are made widely available to researchers and funders, and yet in 2015, Crowe and colleagues,4 reporting on a comparison between treatment research priorities identified by patients, carers, and clinicians with research actually done by researchers, revealed the mismatch still exists. Their added point was “the current research ‘system,’ and culture is not geared to bridging the mismatch.”4(p9) So, what can be done? Why does this mismatch continue to exist?
I would argue that the burden for reducing this mismatch cannot rest solely on the various PSPs that have in many cases successfully engaged with their communities to share these priorities. Although some have had success with commissioning research reflecting the priorities identified (http://www.jla.nihr.ac.uk/priority-setting-partnerships/palliative-and-end-of-life-care/downloads/December2015-newsletter.pdf), others have been less successful. I am not alone in allocating some of this responsibility to researchers and to funders of research. This led me to ask 2 questions: (1) How far are the priorities of PSPs reflected in the research portfolio of the relevant funding bodies? (2) How far are researchers influenced by the priorities from PSPs? On reflection, I think the two are closely connected. To answer the why question, we may have to return to the prevailing culture of research, where greater status and funding are still awarded by some to “basic research” as opposed to “applied research”; where what Ioannidis5 refers to as “blue sky science” is prioritized by funders and researchers. We may have to acknowledge that the patient voice and responding to questions about what is important to our patients might not be valued by everyone associated with research in our respective fields, despite the heightened interest in patient-centered research.6 There may even be a shared bias toward funding “basic research”: who would not want to fund research that may find a cure for cancer or prevent more persons from developing cancer? Alone or combined, these might be some of the reasons why the mismatch occurs.
To answer the what question, I want to broaden these reflections, from this so far UK-centric view of the impact of research priority exercises, to all professionals and patient groups who have or are currently involved in prioritizing research. The “what can be done to address this mismatch” involves us all, whatever country we are working in. First, we need to adopt a systematic and rigorous approach to developing research priorities. The process is time consuming, and can be expensive, for professionals, patients, and carers. Therefore, we need to be confident at the outset that any research priorities described have a real chance of being funded. Funding does involve difficult decisions, but the decision making should include relevant stakeholders, such as patients; a good example here is the Patient-Centered Outcomes Research Institute in the United States.7,8 Second, we already know from the work of the JLA that having patients and relevant stakeholders at the core of priority setting does not automatically result in research being funded. Therefore, we must, with our patient groups, communicate our research priorities to researchers and to funding bodies, to inform their decision making. Funding bodies may also benefit from reflecting on their review criteria: Are they methodologically rigorous and also patient centered? Do they engage with the populations being studied? Does the research have a high probability of impacting clinical practice? We must advocate for research that is clinically useful, for research to answer questions and uncertainties that are relevant to our patients, for research to impact on patient experiences, and to improve care. Basic research and applied research are just types of research; they do not have to be viewed in isolation or opposition. Working in tandem might indeed provide better outcomes and greater utility at an earlier stage.
Researchers, clinicians, patients, carers, and funding bodies all have a significant role to play in setting a research agenda and then ensuring that research priority exercises do indeed shape that agenda from priority to funding. My own “blue sky” thinking as we begin a new year is that a good proportion of readers will have answered the question of this editorial with “a lot,” and if your answer is anything different, I ask you to think about what role you will play in changing that response.
Faith Gibson, PhD
Great Ormond Street Hospital for Children, NHS Foundation Trust,
London; and the Faculty of Health and Medical Sciences, School of
Health Sciences, University of Surrey, United Kingdom
1. Chalmers I. What do I want from health research and researchers when I am a patient? BMJ
2. Chalmers R, Jobling R, Chalmers I. Is the NHS willing to help clinicians and patients reduce uncertainties about the effects of treatment. Clin Med
3. Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003-2013. R Soc Med
4. Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch. Res Involv Engagem
5. Ioannidis JPA. Why most clinical research is not useful. PLoS Med
6. Mullins CD, Vandigo J, Zheng Z, Wicks P. Patient-centeredness in the design of clinical trials. Value Health
7. Fleurence R, Selby JV, Odom-Walker K, et al. How the patient-centered outcomes research institute is engaging patients and others in shaping its research agenda. Health Aff
8. Selby JV, Lipstein SH. PCORI at 3 years—progress, lessons, and plans. N Engl J Med