Re: Patients’ roles and rights in research - One Step in a Long Path
The BMJ should be congratulated on their move to require clinical research submissions to outline the role of patients in the design, conduct and reporting of that research. Hopefully other journals will follow this precedence.
While an important step, there are many more to be taken. As mentioned by Wicks et al, many funding agencies have patient representatives on grant review committees, and this is true in Canada. In my experience the potential involvement of patients in this area has not been fully realized. Patients on these committees have little input into funding decisions and are relegated to reviewing a lay summary of the research limiting their comments to its relevance to the funding agency’s mission. This is defended behind the excuse that patients are not skilled to understand and evaluate research, and results in tokenism at best.
With some training, patients could be educated sufficiently to interpret research, and let us not forget, patients are more than people with a disease. They have a host of life experiences. I have been on committees where patients have been lawyers and engineers, giving them an educated and unique perspective to add to the dialogue. In addition, one could question why agencies are funding research that cannot be written in a way that most people can understand. It is a skill to be able to communicate at various levels, and a skill that many of my colleagues would benefit from having.
Other levers that need to be involved include patient representation on research ethics boards. These boards work to protect patient rights yet patients are not involved in these decisions. With each passing year, the minimal requirements of consent forms increase and what used to be a three-page consent form can now be more than ten pages. This is not to say these well-intentioned requirements are unneeded, but one must realize a jargon-filled multi-page consent form makes understanding, and therefore participating in, research a barrier. Inclusion of patients on these boards can help inform the development of ethical policy that matters to those ask to be in the research.
The academic system also needs to change. An antiquated system in which the merit of research is based on what journal it’s published in, not on how this research impacts society. As a result, once researchers have published their work, many stop there. It doesn’t matter to a researcher’s career how many (or if any) people it, and with respect to clinical research, undoubtedly the knowledge-users do not read scientific journals and will never see the publication. If a researcher does participate in extensive knowledge translation activities such as public presentations, engagement with media, blogging and social media, to name a few, this often goes unrewarded other than a pat on the back.
Participation in research design also needs to be rewarded. Much of the time patients spend on these engagement activities is volunteer. I have sat on a number of committees in which all members are being paid (or it is viewed as part of the member’s service commitment for employment) except the patient volunteers. The patients that do volunteer should be applauded but I can’t help but feel this creates an environment in which some people’s time is valued more than others. Additionally we need to think of further ways to encourage and engage patients as many may have mobility issues and may just not feel well as a result of their condition. These are the exact patients clinical research is working to help, so their inclusion is vital.
As with any system change, there are many levers that need to be engaged. The BMJ’s leadership is crucial as one step in the path forward, and I challenge others to follow their lead.
Wicks, P., Richards, T., & Godlee, F. (2018). Patients ’ roles and rights in research. BMJ, 3193(July), 1–2. https://doi.org/10.1136/bmj.k3193
Competing interests: No competing interests