I recently had the pleasure of listening to Dr. Lisa VanHoose, PT, MPH, PhD, FAPTA, deliver the 2022 Lynda D. Woodruff Lecture on Diversity, Equity, and Inclusion in Physical Therapy. For those of you that have not had the opportunity to listen to Dr. VanHoose, I highly recommend that the next time you are at a conference that she is presenting at that you do so. Dr. VanHoose is a passionate, knowledgeable, insightful, and thought-provoking presenter. During the Lynda D. Woodruff Lecture, she talked about many different areas related to representation, sankofa, and trust. Dr VanHoose's words about representation and transparency in research triggered reflection on my part related to my role as the Editor-in-Chief of JNPT. Where does JNPT stand in terms of representation?
Part of the mission and scope of JNPT is to publish articles of global relevance for examination, evaluation, prognosis, intervention, and outcomes for individuals with movement deficits due to neurologic conditions. JNPT has an international readership. Over 50% of the people who access the JNPT Web site are from outside the United States (US). The top 5 countries accessing the JNPT Web site other than the US are the United Kingdom (UK), India, Australia, Canada, and Brazil. International readers from across the globe including China, Turkey, and Taiwan also access JNPT through OVID.
Authors from across the world submit their research to JNPT. Over the past 3 years, approximately 60% of submissions to JNPT are from corresponding authors who are from outside the US. The primary countries include Australia, Brazil, India, Iran, Canada, China, Israel, Italy (the 2021 recipient of the Golden Synapse award was from Italy), Japan, Spain, Taiwan, and Turkey. However, when it comes to articles that are published in JNPT, approximately 30% are from corresponding authors who are not from the US. JNPT does not ask authors about their race or ethnicity; so we do not have these data.
We have an international editorial board. Out of the 31 Associate Editors (AEs) and Editorial Board Members (EBMs), 6 board members are from outside the US (UK, Australia, Canada, Taiwan, and Norway). However, we do not have representation from South America or Africa. Eight of 12 AEs are women, while 9/19 EBMs are women. We do not have other demographic information such as race or ethnicity on our EBMs, as we do not collect these data. However, there appears to be little representation on the board from ethnic and racial underrepresented groups.
An informal, nonscientific examination of the of the participants in the research studies published in JNPT over the last 2 years finds a lack of consistency in reporting demographic information such as age, biological sex, gender, race, ethnicity, and other socioeconomic indicators. Out of 30 studies, only 3 reported racial and ethnic demographic information on their samples. Biological sex was consistently reported, but it was not always clear if the authors were reporting biological sex or gender. Both terms were used, and authors did not always clearly differentiate between biological sex and gender.1 Age was consistently reported in the demographic data of participants.
The lack of consistent reporting representation falls on both the authors and JNPT. Our guidance to authors and reviewers should be more explicit in asking for this information to be reported when appropriate based on the research question. We may not immediately realize how representation might affect our research questions. For example, we may not think that a specific mechanistic biomechanical research question would be influenced by representation. But if a sample is very homogeneous, the results might not generalize to the broader population, especially more diverse individuals. But in other types of research, it is clearer how representation may play a role. For example, JNPT publishes research that explores the impact of different interventions designed to improve walking activity in neurologic populations, often measured by steps taken per day. Since recent research has found that socioeconomic and environmental factors play a role in activity levels and sedentary behavior in people with chronic stroke,2–4 it may be appropriate through the review process to ask authors to perform secondary analyses on their data to take into account other demographic factors that may not have been considered and to present more specific demographic data related to socioeconomic indicators, race and ethnicity on the participants in their sample. Furthermore, women and minorities are underrepresented generally in clinical trials.5–7
Because of the impact of gender, biological sex, gender, race, ethnicity, and socioeconomic factors on rehabilitation outcomes and utilization of rehabilitation services in people with neurologic health conditions,8–11JNPT needs to take steps to increase representation in a variety of areas including in our editorial board, reviewer pool, authors, and research that is published. Some initial steps will be to develop updated guidelines for authors and reviewers that provide more explicit guidance on reporting demographic information such as age, biological sex, gender, race, ethnicity, and socioeconomic indicators consistently when appropriate. JAMA has guidelines for authors related to reporting race, ethnicity, and other demographic information.12 For example, their guidelines indicate that when race or ethnicity data are collected, the reasons for collecting these data should be described in the methods. JNPT will benefit from EBMs with more diverse backgrounds to help JNPT provide a broader perspective. As the Editor-in-Chief, I need to learn more about these issues and seek guidance and support from experts in this area so JNPT can improve its representation. Thank you Dr. VanHoose for providing me with an opportunity through your Lynda D. Woodruff Lecture to reflect on this important issue. I hope to report to the readers of JNPT in a future editorial how changes in JNPT have improved representation in the journal. Please reach out if you have ideas or would like to support these efforts.
1. Clayton JA, Tannenbaum C. Reporting sex, gender, or both in clinical research? JAMA. 2016;316(18):1863–1864. doi:10.1001/jama.2016.16405.
2. Hall J, Morton S, Fitzsimons CF, et al. Factors influencing sedentary behaviours after stroke: findings from qualitative observations and interviews with stroke survivors and their caregivers. BMC Public Health. 2020;20(1):967. doi:10.1186/s12889-020-09113-6.
3. Miller A, Pohlig RT, Reisman DS. Social and physical environmental factors in daily stepping activity in those with chronic stroke. Top Stroke Rehabil. 2021;28(3):161–169. doi:10.1080/10749357.2020.1803571.
4. Miller A, Pohlig RT, Wright T, Kim HE, Reisman DS. Beyond physical capacity: factors associated with real-world walking activity after stroke. Arch Phys Med Rehabil. 2021;102(10):1880–1887.e1. doi:10.1016/j.apmr.2021.03.023.
5. Spong CY, Bianchi DW. Improving public health requires inclusion of underrepresented populations in research. JAMA. 2018;319(4):337–338. doi:10.1001/jama.2017.19138.
6. Freedman LS, Simon R, Foulkes MA, et al. Inclusion of women and minorities in clinical trials and the NIH Revitalization Act of 1993—the perspective of NIH clinical trialists. Control Clin Trials. 1995;16(5):277–285; discussion 286-289, 293-309. doi:10.1016/0197-2456(95)00048-8.
7. Gore SM. Inclusion of women and minorities in clinical trials. Control Clin Trials. 1995;16(5):290–292. doi:10.1016/0197-2456(95)00126-3.
8. Buie JNJ, Zhao Y, Burns S, et al. Racial disparities in stroke recovery persistence in the post-acute stroke recovery phase: evidence from the Health and Retirement Study. Ethn Dis. 2020;30(2):339–348. doi:10.18865/ed.30.2.339.
9. Fullard ME, Thibault DP, Hill A, et al. Utilization of rehabilitation therapy services in Parkinson disease in the United States. Neurology. 2017;89(11):1162–1169. doi:10.1212/WNL.0000000000004355.
10. Freburger JK, Li D, Johnson AM, Fraher EP. Physical and occupational therapy from the acute to community setting after stroke: predictors of use, continuity of care, and timeliness of care. Arch Phys Med Rehabil. 2018;99(6):1077–1089.e7. doi:10.1016/j.apmr.2017.03.007.
11. Souza WH, Grove CR, Gerend PL, Ryan C, Schubert MC. Regional differences in patient-reported outcomes as a proxy of healthcare practices for Americans living with vestibular symptoms. J Vestib Res. July 2, 2022. doi:10.3233/VES-220022.
12. JAMA. Instructions for authors: reporting demographic information for study participants. https://jamanetwork.com/journals/jama/pages/instructions-forauthors#SecReportingRace/Ethnicity
. Accessed July 13, 2022.