Ann Blair Kennedy, LMT, BCTMB, DrPH, Executive Editor/Editor-in-Chief, IJTMB
Department of Biomedical Sciences, Division of Behavioral, Social, and Population Health, University of South Carolina School of Medicine Greenville, Greenville, SC, USA.Multiple benefits have been found when patients and the public are included as research co-investigators. To this end, a change is being made to the IJTMB authorship guidelines to include a new subsection within the Methods section of manuscripts, entitled “Patient and Public Involvement”. We recommend that authors include in this section information on how patients and other stakeholders were included in the design, implementation, data analysis, and dissemination of studies. Further guidelines are provided.
This September marks my 20th year as a licensed massage therapist in the state of South Carolina. During this time while I was in practice, I began to get interested in massage therapy research. I was reading scientific articles on massage and I noticed a consistent limitation in the literature. Much of the massage therapy research was lacking direct involvement from massage therapists. I did not often see massage therapists (MTs) included in the planning of the studies, and often they were not included in the implementation of the interventions, either. This bothered me. There were exceptions of course,(1,2) and when (MTs) were included in the planning and conducting of the research, it seemed more applicable to my practice. This lack of MTs included in massage therapy studies was a concern that drew me to graduate school with a goal to help remedy the deficiency of massage therapist involvement in research study design and implementation. My purpose was to make sure that the MT stakeholders, who provided treatment and would use the research, would be included in study designs.
Once I finished my degree, I began a postdoctoral fellowship at the University of South Carolina School of Medicine Greenville. The beginning of my fellowship in February 2016 also marked the beginning of the Patient Engagement Studio (PES) at the Greenville Health System (the Greenville Health System is now Prisma Health—Upstate). The PES Director, Dr. Peggy Wagner, found me in my first week and invited me to join the work in which patients would be included as co-investigators in the research process and in health system innovations. While this was not the area of my fellowship and I had not before considered including patients as co-investigators, this seemed to be a new extension of my previous quest of including MTs and other stakeholders in research. For the past three years now, I have worked with PES to review and make recommendations to over 50 research studies. This work, with these patient experts, clinicians, researchers, and staff of the PES, has changed my perspective on massage therapy research and, hence, the purpose of this editorial—a change in IJTMB author guideline policy.
Multiple benefits have been identified when patients and the public are included in the production of research, from improved study design(3,4) to improving participant recruitment and retention(5,6) and improving study implementation,(7) to name a few. As of the publication of this issue, we will begin the process of recommending that all authors include a statement within their Methods sections on how patients and the public were included in the co-production of the study. We are following the leadership of the British Medical Journal (BMJ) and their Patient and Public Partnership initiative which began in 2014.
While the BMJ has multiple aspects of their initiative, we will begin simply by asking authors to include patient and stakeholder participation information within their manuscripts. As guidance for authors, the Methods section should include a new subsection entitled Patient and Public Involvement, and we recommend authors provide answers to the following questions:
How and at what stage of the process were patients/public first involved?
How did the patient and public involvement influence the study development?
○ How did they help to clarify the research question?
○ How did they help to identify specific research participant characteristics?
○ How and what did they suggest that helped to minimize disruptions to study participants?
How were patients and the public involved in shaping the study design?
○ How were they included in determining or assisting with study recruitment and study implementation?
○ How did they assist with data collection and analysis?
How were patients and the public involved in the dissemination of results?
Further guidance on how to best report patient and public involvement in research can be seen in the GRIPP2 reporting checklist.(8) One additional caveat for those researchers who are not also massage therapist, this guidance can be considered not only for how you included patients, but also for how MTs were included in projects.
We do understand that this will be a shift for many researchers, and many of those studies that are currently in production may not have included patients, public stakeholders, or massage therapists. We also understand that, in some cases, it is not feasible for patients or the public to be included. Therefore, for the time being, this is only a recommendation, and we will consider and continue to publish papers where patients and the public were not included. We here at the IJTMB feel that reporting patient and public involvement is important, and this is the first step to a developing new Patient and Public Partnership Strategy for the Journal.
1 Cherkin DC, Sherman KJ, Kahn J, Wellman R, Cook AJ, Johnson E, .et al. A comparison of the effects of 2 types of massage and usual care on chronic low back pain: a randomized, controlled trial. Ann Intern Med. 2011;155(1):1–9.
2 Patterson M, Maurer S, Adler SR, Avins AL. A novel clinical-trial design for the study of massage therapy. Complement Ther Med. 2008;16(3):169–176.
3 Forbes LJ, Nicholls CM, Linsell L, Graham J, Tompkins C, Ramierz AJ. Involving users in the design of a randomised controlled trial of an intervention to promote early presentation in breast cancer: qualitative study. BMC Med Res Methodol. 2010;10(1):110.
4 Newhouse RP, Johantgen M, Thomas SA, Trocky NM, Dennison-Himmelfarb C, Cheon J, et al. Engaging patients with heart failure into the design of health system interventions: impact on research methods. Geriatr Nur. 2017;38(4):342–346.
5 Dudley L, Gamble C, Preston J, Buck D, Hanley B, Williamson P, et al. What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials. PloS One. 2015;10(6):e0128817.
6 Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(1):89.
7 Absolom K, Holch P, Woroncow B, Wright EP, Velikova G. Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes. Qual Life Res. 2015;24(5):1077–1085.
8 Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358;j3453.
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INTERNATIONAL JOURNAL OF THERAPEUTIC MASSAGE AND BODYWORK, VOLUME 12, NUMBER 2, JUNE 2019