Developing tools for practice that support and serve patient choice is included in the first line in The Manifesto for Evidence Based Health Care. The manifesto is collecting public views as a way of promoting awareness of evidence based healthcare, and to provide a platform to introduce concepts for delivering constructive growth and change. Awareness is a start, but observation is not enough—it is one thing to contribute to the manifesto, but another to act on it. After critically appraising reviews about involving public and patient involvement as partners in research, we found that researchers using patients to advise on what was already done was more common than involving patients in the research. [1,2] Meaningful interactions with patients at an early stage of research can propel the aims of the manifesto, promote innovation, and help translate research knowledge into clinical practice.
At present, “roles” assigned to patients are often “advisory” and they are asked to approve or comment on what was already done. [3] This is a recipe for inaccuracy when patients do not always have all the facts available to comment accurately on what was done. [4] This places patients at a disadvantage as they are expected to comment in a group that has already decided what they want. Often there is a lone volunteer “advising.” [5]
It can be easier to comply with mainstream opinion than to risk exclusion by disagreeing. Often patients are navigating tensions between best practice, values, and belonging. [6] In a recent study, comments on social media about patients’ experience in clinical trials were analyzed. [7] The research found that participants feared they would be blacklisted or asked to leave if they said anything negative about the research. These participants were concerned that their comments could harm the trial and participants in it, even if the intervention was not working for them. [7] How much greater is this pressure when volunteers are named as a partner, but are expected to collaborate without full disclosure?
Research volunteers reflected on these tensions and shared their recommendations: *
“I felt awkward being the only non-medic and not a researcher. It would be better to have at least one more volunteer to serve with”
“Trust us, be transparent and update us often even when the news is bad”
“Sometimes the researchers interrupt us and don’t really listen, they make it clear what decision we are supposed to come up with, but that is not really a shared decision is it?”
“Assign us a research team member we can talk to about questions we are embarrassed to ask in the group”
“Some training about research terms or even a glossary would be great to help us feel useful and fit in. When you talk to other team members one way and us in baby talk, it is confusing and makes us feel like outsiders”
Volunteers appreciate being heard and informed. Volunteers showed resilience when the research team explained why suggestions could not be implemented. They enjoy working in small groups and brainstorming solutions before a formal planning meeting. They welcome being included to share the findings and in future research plans. [6-8] The first steps in developing tools for practice that support and serve patient choice is to work with patients and volunteers from the earliest stages, building in time for communication and feedback. Researchers that choose this path report multiple benefits from citizen research involvement. [9] In addition, the work of the public and patients as co-collaborators in research questions that are of interest to them has profound implications for the manifesto. By identifying the aspirations, needs, and identities of the end users, the patients can provide clear practical insight and innovation to deliver research knowledge into practice.
Amy Price worked as a neurocognitive rehabilitation consultant and in international missions before sustaining serious injury and undergoing years of rehabilitation. She is a BMJ research fellow, serves on the BMJ Patient Panel, and is reading for a DPhil in evidence based healthcare at the University of Oxford.
Competing interests: None.
* These quotes were coded by research volunteers from publicly available social media data collected for and are used by permission from the “Mind the gap in clinical trials: A participatory action analysis with citizen collaborators”
References:
1. Concannon TW, Ph D, Fuster M, et al. A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research. Published Online First: 2014. doi:10.1007/s11606-014-2878-x
2. Brett J, Staniszewska S, Mockford C, et al. The PIRICOM Study : A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. 2010;:1–292.
3. Concannon TW, Fuster M, Saunders T, et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med 2014;29:1692–701.
4. Flinders M, Wood M, Cunningham M. The politics of co-production: risks, limits and pollution. Evid Policy A J Res Debate Pract 2016;12:261–79. doi:10.1332/174426415X14412037949967
5. Snow R, Crocker JC, Crowe S. Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting. Res Involv Engagem 2015;1:7. doi:10.1186/s40900-015-0007-6
6. Braithwaite J. Bridging gaps to promote networked care between teams and groups in health delivery systems: a systematic review of non-health literature. BMJ Open 2015;5:e006567.
7. Price A, Liew SM, Kirkpatrick J, et al. Mind the gap in clinical trials: A participatory action analysis with citizen collaborators. J Eval Clin Pract 2016:1–7. doi:10.1111/jep.12678
8. Smith E, Ross F, Donovan S, et al. Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice. Int J Nurs Stud 2008;45:298–315.
9. Hubbard L. and Donaghy, E. G and K. Involving people affected by cancer in research: a review of literature. Eur J Cancer Care (Engl);17:233–44.