What is the role of patients in research? Initiatives like the James Lind Alliance, in which the Royal Society of Medicine is involved, place patients at the heart of the research process by inviting them to help define the questions that need to be answered. Clearly, patients need to have a role throughout, and this month's JRSM explores dilemmas at the beginning and the end of research.
Outcomes research is increasing in prominence, with recommendations from the National Institute of Health and Clinical Excellence. The Affordable Care Act in the United States has prompted creation of the Patient-Centred Outcomes Research Institute. Assessment of outcomes matters, and it is patient-centred outcomes that matter the most. Sanjay Budhdeo et al. discuss the value of using a core set of outcomes that are assessed and reported in all trials for a particular condition.1 It seems a logical approach, but how to get there? Collaborations between patient groups, clinicians, health economists, policy makers and academics look to be the way forward.
Research ethics committees make difficult choices but since patients face the risks, should decisions be made without their input? David Shaw and Bernice Elger argue that patients must participate in research ethics committee meetings, indeed two patients must be involved to avoid feelings of intimidation and isolation.2 They must be healthy enough to attend, of course, but also meet the inclusion criteria for the study. These measures are essential for first in human trials, argue the authors, and particularly so for those involving novel biotechnology.
Once patients become experienced, they might mentor others in the role of participating in research ethics committee meetings? A research paper in this issue explores the role of mentoring in academic career progression and finds that both the mentor and mentee value mentoring, but that careful planning, training and ongoing support are required.3 An important benefit is that mentees are able to pull their heads out of the day to day grind and see the bigger picture in relation to their careers. The bigger picture analogy also applies to the role of patients in research design and outcomes assessment, the bigger picture in that scenario is that patients matter more than career advancement.
References
- 1.Budhdeo S, Chari A, Harrison O, Blazeby J. Patient-centred healthcare outcome measures: towards a unified architecture. J R Soc Med 2014; 107: 300–302 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Shaw D, Elger B. Putting patients on research ethics committees. J R Soc Med 2014; 107: 304–307 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Iversen AC, Eady NAJ, Wessely SC. The role of mentoring in academic career progression: a cross-sectional survey of the Academy of Medical Sciences mentoring scheme. J R Soc Med 2014; 107: 308–317 [DOI] [PMC free article] [PubMed] [Google Scholar]