Clinical practice guidelines (CPGs) are critically important in guiding patient care, and recent reports have demonstrated disparities in the inclusion of women physicians and other experts as authors among many medical specialties, including physical medicine and rehabilitation (PM&R; Appendix Table A, Supplemental Digital Content 1, https://links.lww.com/PHM/B440). Disparities have been documented for women physicians, including guidelines used to direct care in PM&R.1–3
How authorship disparities affect guideline content or the delivery of care is unknown. There are documented disparities in the PM&R workforce for women and people who identify as racial or ethnic minorities,4–6 as well as known disparities for patients who identify with these same groups with regard to access to rehabilitation care7,8 and inclusion in clinical trials.9,10
More than a decade ago, a report titled “Clinical Practice Guidelines We Can Trust” was published by the Institute of Medicine (IOM).11 The report recommended eight standards for developing rigorous, trustworthy CPGs, one of which was “guideline development group composition”11 (Table 1). The IOM report discussed the issue of bias and stated that CPGs should be produced based “on an explicit and transparent process that minimizes distortions, biases, and conflicts of interest” and “provide a clear explanation of the logical relationships between alternative care options and health outcomes.”11 The report noted that bias may be a factor in CPG development depending on the group composition, but the focus was on the inclusion of multiple disciplines and proceduralists versus nonproceduralists (Table 1). There was no specific mention of demographic or identity characteristics (e.g., gender, race, ethnicity, sexual orientation, ability level) of the professional members or the patient members.11
TABLE 1 -
Summary of recommendations from the Institute of Medicine
11
|
Eight standards for developing rigorous, trustworthy CPGs
|
| 1. Establish transparency |
| 2. Manage conflicts of interest |
| 3. Focus on guideline development group composition |
| 4. Utilize high-quality systematic reviews |
| 5. Establish evidence foundations for and rating strength of recommendations |
| 6. Articulate recommendations |
| 7. Ensure an external review |
| 8. Update regularly |
|
Three recommendations regarding CPG development group composition
|
| 1. The group should be multidisciplinary and balanced, comprising a variety of methodological experts and clinicians, and populations expected to be affected by the CPG. |
| 2. Patient and public involvement should be facilitated by including (at least at the time of clinical question formulation and draft CPG review) a current or former patient, and a patient advocate or patient/consumer organization representative in the development group. |
| 3. Strategies to increase effective participation of patient and consumer representatives, including training in appraisal of evidence, should be adopted by development groups. |
These recommendations for CPGs were published more than a decade ago in the Institute of Medicine’s report titled “Clinical Practice Guidelines We Can Trust.” They have been widely used to develop CPGs; however, they do not account for many aspects of author diversity that are relevant by today’s standards.
In this report, our limited investigations are intended to be examples (not exhaustive analyses of CPGs in the specialty) of author gender, race, and ethnicity. We also analyzed “visible minority” status, which is a term that has been used in other research studies to indicate people whose appearance identifies them to others as being part of a racial or ethnic minority group.12 We hypothesized that among physicians, our analysis would demonstrate the underrepresentation of women and both men and women who are classified as being part of a racial or ethnic minority group. After multiple literature searches, we were unable to locate any studies reporting CPG author race, ethnicity, or other characteristics such as ability status and sexual orientation. Nor were there studies on authors with intersectional identities (e.g., a Black woman or a Hispanic man with a disability), which may increase the level of bias or discrimination someone experiences. Notably, when conducting research on identity-related issues, it is generally necessary for individuals to self-disclose their status (i.e., to state whether they have a disability or identify as a sexual minority such as lesbian, gay, bisexual, transgender, queer, questioning [LGBTQ+]), and the healthcare workforce literature is sparse on these topics. Self-disclosure is typically revealed by surveying the study population. We considered using surveys to allow authors to self-identify, but a low response rate would be a problem, so we conducted our analysis on the entire CPG author group using a two-rater system and methodology previously described in the literature.13
ANALYSIS
Methods
Primary Analysis
Our primary analysis focused on identifying CPG authors’ gender, race, ethnicity, and visible minority status. We used two distinct sets of CPGs (Appendix Table B, Supplemental Digital Content 2, https://links.lww.com/PHM/B441). The first set (n = 7) included all CPGs produced by the Department of Veterans Affairs and the Department of Defense categorized as “Rehabilitation” or “Pain” on the United States (US) Department of Veterans Affairs website as of April 2021 (published 2014–2020)—hereafter called “VA CPGs.” The second set of CPGs (n = 10) were published in the US between 2019 and 2021 and were selected to demonstrate examples of low numbers of inclusion. This set, hereafter referred to as “US CPGs,” focuses on rehabilitation-related topics for physician end-users (i.e., not physical therapists or other clinicians). Importantly, we intentionally included all “VA CPGs” and only relevant examples of “US CPGs” for this analysis to highlight various issues related to this perspective report as this is not intended to be an exhaustive study of CPGs. We arbitrarily set less than 20% women as a cutoff for “low numbers” of women. Notably, women comprise approximately 43% of academic physiatrists4 (Appendix Table C, Supplemental Digital Content 3, https://links.lww.com/PHM/B442) and 36% of physicians (Fig. 1) and have high proportions in other rehabilitation-related disciplines such as physical/occupational/speech therapists, psychologists, social workers, and nurses. Upon brief inspection, before a more thorough analysis, some of the US CPGs were at zero or “inexorable zero” levels for women and/or women physicians. Inexorable zero has been previously described in the legal literature and is a term used by US courts to infer bias or discrimination if there is a true zero or near-zero number.14 Inexorable zero has also been used to describe disparities in the PM&R literature, and interested readers are referred to the cited publications for further information.15,16
;)
FIGURE 1: Women authors in US CPG group. Percentage women represented within each CPG author category of US CPG group (n = 10).
Clinical practice guideline authors were either explicitly designated, noted to be directly involved in guideline content development, or designated as a guideline chair. We excluded people who were identified as patients, consultants, staff members, peer reviewers, nonvoting members of CPG groups, administrators, literature reviewers, nonphysician public representatives, or without identified responsibilities (i.e., nonauthors). For each author, CPG leadership role (guideline chair, project leader, or study supervisor), author order, and terminal degree were recorded. When this professional information was not included in a CPG, online searches for professional profiles, resumes, or details noted in association with other publications of the same year as the respective CPG publication were used to complete the data collection. In addition to these variables, gender, race, ethnicity, and visible minority classifications were recorded for each author. When data were unattainable for a variable, that individual was excluded from the respective variable’s analysis.
Each CPG team had two raters who classified each variable independently and compared interrater reliability. A third rater addressed discrepancies. The raters classified author gender by pronouns using the categories he/him, she/her, and they/them. If pronouns were unavailable, photographs and/or gender API, an online gender name tool that has been previously used in research, was used to infer gender.17,18
The raters classified race, ethnicity, and visible minority status of authors via online photographs, names, and additional information (e.g., languages spoken, birthplace, and organizational affiliations). Race was categorized as “Caucasian/White,” “African American/Black,” or “Asian.” In accordance with the US Census Bureau race guidelines,19 individuals having origins in the Far East, Southeast Asia, or the Indian subcontinent were classified as “Asian,” and individuals with origins in Europe, the Middle East, or North Africa were classified as “Caucasian/White.” Ethnicity was categorized as “Hispanic/Latino” or “non-Hispanic/Latino” independent of race. The raters classified “visible minority” based on photographs, and the instructions to the raters after a review of the literature on this topic and discussion among all of our group members was to consider whether these individuals, based on their appearance would be perceived by others on the CPG committee as a White author who belonged to a minority group (e.g., Middle Eastern). The ratings for the visible minority category were “yes” or “no.”
Secondary Analysis
In our secondary analysis, we used the entire set of VA CPGs (n = 21; refer to Appendix Fig. A, Supplemental Digital Content 4, https://links.lww.com/PHM/B443, for information about the VA CPG primary and secondary analysis). This analysis focused on the CPGs themselves rather than the authors. We aimed to identify whether the CPG content identified and discussed gender differences in physiology and/or social determinants of health (SDOHs). Social determinants of health are the external and environmental conditions that may impact health functioning, well-being, and quality of life and are associated with health and healthcare disparities.
The VA CPGs (all that were listed on the website at the time of extraction as noted previously) were reviewed to determine whether there was a guideline content regarding gender or SDOH. The variables examined included gender for differences in physiology (with search terms: female, male, gender, sex, men, women, man, woman), as well as SDOH including economic factors (search terms: cost/expenses, income, employment/job, financial, financial support), neighborhood and physical environment (search terms: safety, walkability, transportation, housing), education (search teams: literacy, language, educational level), food (search terms: hunger/food, access to healthy or recommended options), community and social context (search terms: support system and community engagement), and healthcare system (search terms: health coverage, cultural competency, equity). We also reviewed the CPGs to determine whether they contained information on disabilities, racial/ethnic minority needs, a general diversity statement on patients, mention of diversity of the committee, and pregnancy or menopause. This analysis had two raters who reviewed each guideline.
Statistical analysis was primarily descriptive and used the data sets to calculate percentages to make comparisons and summarize findings related to known percentages of gender and/or racial/ethnic minority physicians per data in 2018 Association of American Medical Colleges reports. In the secondary analysis, percentages of completeness on certain SDOH were calculated and compared with other VA guidelines.
This review did not involve human subjects, and the information collected is publicly available; therefore, institutional review board approval was not required.
RESULTS
VA CPG Analysis
We analyzed seven VA CPGs with an average of 26.2 ± 2.7 (range = 24–32) authors each and 184 authors total (Table 2). Complete data sets were collected from online searches for each author with the exception of 3 (1.6%) nonphysician authors, for which Gender API was used for gender data and 22 (12.0%) authors (19 nonphysician and 3 physician authors) for which race and ethnicity data were unattainable. Of the 184 total authors, 92 (50.0%) were identified as women (Table 2, Fig. 2). None of the authors were found to use they/them pronouns. The race analysis revealed 140 (76.1%) White, 12 (6.5%) Asian, and 10 (5.4%) Black authors (Table 2, Fig. 3A). Ethnicity analysis found 6 (3.3%) Hispanic/Latino authors (Table 2, Fig. 3A). When assessing authors by gender and race (intersectional identities), we found 71 (38.6%) White women, 4 (2.2%) Asian women, and 8 (4.3%) Black women (Fig. 3B). There were 2 (1.1%) Hispanic/Latino women (Fig. 3B). There were 28 authors (15.2%) identified as visible minorities, and 14 women (7.6%) identified as visible minorities.
TABLE 2 -
Demographics of VA CPG group authors and chairs
|
|
Headache
a
|
Concussion mTBI
a
|
Lower Back Pain
a
|
Lower Limb Amputation
a
|
Opioid Therapy for Chronic Pain
a
|
Stroke Rehabilitation
a
|
The Management of Upper Extremity Amputation Rehabilitation
a
|
Total |
| CPG authors (all) |
Total authors |
26 |
28 |
24 |
24 |
24 |
26 |
32 |
184 |
| Women authors |
12 |
12 |
10 |
12 |
10 |
16 |
20 |
92 |
| Total chairs |
4 |
3 |
4 |
5 |
2 |
5 |
5 |
28 |
| Women chairs |
0 |
1 |
0 |
2 |
0 |
3 |
3 |
9 |
| White authors |
21 |
23 |
16 |
19 |
20 |
14 |
27 |
140 |
| Black authors |
1 |
3 |
2 |
1 |
1 |
1 |
1 |
10 |
| Asian authors |
2 |
1 |
4 |
0 |
0 |
3 |
2 |
12 |
| Hispanic authors |
1 |
0 |
1 |
0 |
1 |
1 |
2 |
6 |
| CPG authors (physicians) |
Total authors |
10 |
12 |
8 |
6 |
10 |
8 |
8 |
62 |
| Women authors |
2 |
2 |
1 |
1 |
4 |
3 |
2 |
15 |
| Total chairs |
4 |
2 |
4 |
3 |
2 |
4 |
1 |
20 |
| Women chairs |
0 |
0 |
0 |
0 |
0 |
2 |
0 |
2 |
| White authors |
8 |
10 |
6 |
6 |
10 |
4 |
7 |
51 |
| Black authors |
0 |
1 |
0 |
0 |
0 |
0 |
0 |
1 |
| Asian authors |
2 |
1 |
2 |
0 |
0 |
2 |
1 |
8 |
| Hispanic authors |
1 |
0 |
0 |
0 |
1 |
1 |
1 |
4 |
a Race and ethnicity data were unattainable for 19 nonphysician and 3 physician authors. These 19 nonphysician and 3 physician authors were excluded from race and ethnicity data analysis of all authors and physician authors, respectively.
mTBI, mild traumatic brain injury.
FIGURE 2: Women authors in VA CPG group. Percentage women represented within each CPG author category of VA CPG group (n = 7).
The next part of the analysis examined physician authors (n = 62), and of these, 15 were women (24.2%; Table 2, Fig. 2). The race analysis revealed 51 (82.3%) White, 8 (12.9%) Asian, and 1 (1.6%) Black physicians (Table 2, Fig. 3C). Ethnicity analysis found 4 (6.5%) Hispanic/Latino physicians (Fig. 3C). Visible minorities comprised 12 (19.4%). When assessing physician authors by gender and race (intersectional identities), we found 14 (22.6%) White women, 1 (1.6%) Asian woman, and 0 (0%) Black women (Fig. 3D). There was 1 (1.6%) Hispanic/Latino woman (Fig. 3D). All of the CPGs (7 [100%]) identified authors as chairs (n = 28), with 9 (32.1%) woman chairs (Table 2). All 9 (100%) woman chairs were identified as White. No woman chairs were identified as Asian, Black, Hispanic/Latino, or visible minority.
FIGURE 3: Gender, race, and ethnicity analysis in VA CPG group. A, Race and ethnicity analysis among all authors. B, Gender, race, and ethnicity analysis among all authors. C, Race and ethnicity analysis among all physician authors. D, Gender, race, and ethnicity analysis among all physician authors.
Interrater reliability was tested with Cohen κ, and this was equal to 1 with 100% interrater concordance for all categories (race, gender, visible minority).
US CPG Analysis
We analyzed 10 US CPGs with an average of 19 ± 12 (range = 10–49) authors each and 189 authors total (Table 3). Complete data sets were collected from online searches for each author with the exception of two (1.1%) nonphysician authors, for which Gender API was used for gender data and 2 (1.1%) nonphysician authors for which race and ethnicity data were unattainable. Of the 189 total authors, 36 (19.0%) were identified as women (Table 3, Fig. 1). No authors were identified as gender nonbinary. The race analysis revealed 145 (77.5%) White, 38 (20.3%) Asian, and 4 (2.1%) Black authors (Table 3, Fig. 4A). Ethnicity analysis found 4 (2.1%) Hispanic/Latino authors (Table 3, Fig. 4A). When assessing authors by gender and race (intersectional identities), we found 29 (15.5%) White women, 6 (3.2%) Asian women, and 1 (0.5%) Black woman (Fig. 4B). There was 1 (0.5%) Hispanic/Latino woman (Fig. 4B). There were 12 (6.4%) total authors identified as visible minorities, and 6 (3.2%) women identified as visible minorities.
TABLE 3 -
Demographics of US CPG group authors and chairs
|
|
Distal Radius Fractures |
Patent Foramen Ovale and Secondary Stroke Prevention |
Cancer Pain |
Rotator Cuff Injuries |
Osteoporosis |
Movement Disorders and Neurodegenerative Diseases |
Acute Pain From Non–Low Back, Musculoskeletal Injuries |
Metastatic Brain Tumors |
Low Back Pain |
Hip and Knee Osteoarthritis
a
|
Total |
| CPG authors (all) |
Total authors |
10 |
10 |
12 |
14 |
14 |
16 |
17 |
26 |
49 |
21 |
189 |
| Women authors |
1 |
1 |
3 |
3 |
5 |
4 |
6 |
4 |
3 |
6 |
36 |
| Total chairs
b
|
1 |
N/A |
N/A |
3 |
2 |
1 |
2 |
N/A |
2 |
3 |
14 |
| Women chairs
b
|
0 |
N/A |
N/A |
0 |
1 |
0 |
0 |
N/A |
0 |
0 |
1 |
| White authors |
9 |
7 |
11 |
12 |
12 |
11 |
13 |
20 |
36 |
14 |
145 |
| Black authors |
0 |
0 |
0 |
0 |
0 |
0 |
0 |
0 |
2 |
2 |
4 |
| Asian authors |
1 |
3 |
1 |
2 |
2 |
5 |
4 |
6 |
11 |
3 |
38 |
| Hispanic authors |
0 |
1 |
1 |
0 |
1 |
0 |
0 |
1 |
0 |
0 |
4 |
| CPG authors (physicians) |
Total authors |
8 |
10 |
12 |
11 |
14 |
16 |
17 |
26 |
40 |
8 |
162 |
| Women authors |
1 |
1 |
3 |
1 |
5 |
4 |
6 |
4 |
2 |
0 |
27 |
| Total chairs
b
|
1 |
N/A |
N/A |
3 |
2 |
1 |
2 |
N/A |
2 |
3 |
14 |
| Women chairs
b
|
0 |
N/A |
N/A |
0 |
1 |
0 |
0 |
N/A |
0 |
0 |
1 |
| White authors |
7 |
7 |
11 |
9 |
12 |
11 |
13 |
20 |
28 |
5 |
123 |
| Black authors |
0 |
0 |
0 |
0 |
0 |
0 |
0 |
0 |
2 |
1 |
3 |
| Asian authors |
1 |
3 |
1 |
2 |
2 |
5 |
4 |
6 |
10 |
2 |
36 |
| Hispanic authors |
0 |
1 |
1 |
0 |
1 |
0 |
0 |
1 |
0 |
0 |
4 |
a Race and ethnicity data were unattainable for 2 nonphysician authors; these 2 authors were excluded from race and ethnicity data analysis of all authors.
b N/A indicates no chairs identified in CPG.
FIGURE 4: Gender, race, and ethnicity analysis in US CPG group. A, Race and ethnicity analysis among all authors. B, Gender, race, and ethnicity analysis among all authors. C, Race and ethnicity analysis among all physician authors. D, Gender, race, and ethnicity analysis among all physician authors.
The next part of the analysis examined physician authors (n = 162), and of these, 27 (16.7%) were women (Table 3, Fig. 1). The race analysis revealed 123 (75.9%) White, 36 (22.2%) Asian, and 3 (1.9%) Black physicians (Table 3, Fig. 4C). Ethnicity analysis found 4 (2.5%) Hispanic/Latino physicians (Table 3, Fig. 4C). Visible minorities comprised 11 (6.8%). When assessing physician authors by gender and race (intersectional identities), we found 29 (17.9%) White women, 5 (3.1%) Asian women, and 0 (0.0%) Black women (Fig. 4D). There was 1 (0.6%) Hispanic/Latino woman (Fig. 4D). The majority of the CPGs (7 [70.0.7%]) identified authors as chairs (n = 14), with 1 (7.1%) woman (Table 3, Fig. 1), 10 (71.4%) White, 4 (28.6%) Asian, 0 (0.0%) Black, 0 (0.0%) Hispanic/Latino, and 0 (0.0%) visible minorities. The woman chair was coded as Asian.
Interrater reliability was tested with Cohen κ, and this was equal to 1 with 100% interrater concordance for all categories (race, gender, visible minority).
Secondary Analysis
The secondary analysis focused on guideline content and found that all of the CPGs (excluding the pregnancy guideline) recognized sex-related physiologic differences (Table 4). Four specific SDOH—economic factors, education, healthcare system, and disabilities—were recognized by all of the VA CPGs. The next most recognized was race/ethnic minority needs, and this was recognized by all CPGs except the one on concussion/mild traumatic brain injury, which did not go beyond mentioning that “culturally appropriate” needs should be met (e.g., including in the military setting). Most of the CPGs did include a general patient diversity statement.
TABLE 4 -
Analysis of the inclusion of certain
social determinants of health in the CPGs
|
Economic Factors |
Education |
Healthcare System |
Disabilities |
Race/Ethnic Minority Needs |
Biologic Sex Difference |
General Patient Diversity Statement |
Employment |
Community and Social Context |
Pregnancy |
Neighborhood and Physical Environment |
Food |
Menopause |
Diversity of CPG Writing Committee |
| Asthma |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| CKD |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| COPD |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| DM |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Hip and knee OA |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Dyslipidemia |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| HTN |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Chronic insomnia and OSA |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Obesity |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Opioid |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Low back pain |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Headache |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Suicide |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| PTSD |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Substance abuse |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| mTBI |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| LE amputation |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Stroke |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| UE amputation |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Chronic multisystem illness |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| Pregnancy |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Gray coloring means that CPG addressed that issue.
CKD, chronic kidney disease; COPD, chronic obstructive pulmonary disease; DM, diabetes mellitus; HTN, hypertension; LE, lower extremity; mTBI, mild traumatic brain injury; OA, osteoarthritis; OSA, obstructive sleep apnea; PTSD, posttraumatic stress disorder; UE, upper extremity.
Factors least recognized involved menopause (4 [19.0%]), food (6 [28.6%]), neighborhood and physical environment (10 [47.6%]), and pregnancy (12 [57.1%]). Several guidelines did not focus on topics such as employment, community, and social context. Of note, when looking for a statement on the diversity of the CPG writing committee, none of the guidelines recognized this as a priority. Further results are delineated in Table 4.
DISCUSSION
We found that women authors were equally represented (92 [50.0%]) in the VA CPGs (Table 2, Fig. 2). In the US CPGs, women authors were underrepresented (36 [19.0%]), which was an expected finding because we specifically selected these guidelines based on low representation of women (Table 3, Fig. 1). Both VA and US CPGs underrepresented women physicians (15 [24.2%] and 27 [16.7%], respectively; Tables 2, 3; Figs. 1, 2). Among all physician authors, women physicians who were identified as having intersectional identities and belonging to racial or ethnic minority groups were particularly underrepresented. The number of women physicians identified as belonging to racial/ethnic minority groups for the VA CPGs: 1 (1.6%) Asian, 0 (0.0%) Black, and 1 (1.6%) Hispanic/Latino (Fig. 3D). Women physician authors for the US CPGs: 5 (3.1%) Asian, 0 (0.0%) Black, and 1 (0.6%) Hispanic/Latino (Fig. 4D). Visible minorities were also represented at low proportions as authors in both groups of guidelines (VA CPGs: 28 [15.2%], US CPGs: 12 [6.4%]).
In the content-based secondary analysis, we found gaps in addressing gender and SDOH. Most of the content gaps in our analysis were related to not recognizing the effects of diversity of CPG writing committee, menopause, pregnancy, food, and neighborhood and physical environment. Four SDOH were mentioned by all of the guidelines: economic factors, education, healthcare system, and disabilities (Table 4).
Gender
Our findings of underrepresentation of women authors, particularly among physicians, are important to consider—both in the context of gender and race/ethnicity. For example, there was one individual who was an author on all seven VA CPGs. Because we counted each appearance of a woman author (vs. unique individuals as authors), her presence on seven guidelines means that one woman was responsible for seven of the author slots coded for women (there was no comparable redundancy for men). This author was coded as a Black woman who had a bachelor’s degree (nonphysician and no advanced terminal degree) who was a healthcare administrator. Zero Black woman physicians were included as authors on the seven VA CPGs. Similarly, the US CPG group also had zero Black women physician authors out of 162 total authors. Because the physician authors could be recruited from many specialties, such as PM&R, neurology, orthopedics, family practice, and internal medicine, it simply is not true that there were no qualified or willing Black women physicians who could have been included. Although the role of the healthcare administrator is important, her role cannot be compared with the role of a physician expert, and thus, the knowledge and insight a Black woman physician brings to the content development process are lost. The issue of women physicians being particularly underrepresented on CPGs is consistent with the published literature.2,3,20–30 Even when there is an upward trend in the inclusion of women experts, this may not represent equitable inclusion across the specialty or disease topic. For example, a study evaluating the gender representation for CPGs published by the National Comprehensive Cancer Network found that the proportion of women on panels increased from 2013 to 2019 by 1.6% per year, and this rate was roughly equivalent to 1.0% per year previously observed among oncology trainees and full-time female hematology/oncology faculty.29 However, the increase was noted to be driven by a greater increase within the female-predominant cancers compared with other disease sites. When the authors excluded the female-predominant cancers, the increase was negligible.
Race/Ethnicity
Our findings on the underrepresentation of CPG authors who were coded as racial and ethnic minorities are novel. Recent studies highlight disparities for women on guideline committees have not focused on race, ethnicity, ability, sexual orientation, or other factors usually more challenging to study retrospectively in people who have not self-identified. On the other hand, coding individuals by race and ethnicity using a rater system similar to what we used or by other methods (e.g., names) is not novel. As other authors have pointed out, when researchers group individuals by race or ethnicity, this may not reflect their true identity. For example, Bertolero et al.31 wrote that they were not seeking nor claiming to determine the “true” race of any given authors, but rather they were using “a flawed approach for assessing something as personal, complex, and societally defined as race.” Their explanation stated “to the extent that these models can accurately measure one or both of these characteristics, they can nontrivially capture the effects of such biases on authors of color.” Importantly, our diverse author team had numerous discussions before conducting our analysis about whether and how to analyze race and ethnicity. We concluded that while the established methodologies all have serious limitations, there is an urgent need to better identify racial and ethnic workforce disparities and their impact on patient care. We also agreed that regardless of how authors may identify themselves, the perception others have of potential authors’ racial and ethnic identities may have implications regarding their inclusion on CPG committees.
Because we believe that perception is itself of great importance when studying the inclusion of authors, we not only analyzed race and ethnicity in separate categories but also used a concept established in the literature called “visible minority.”12 In this category, we found that visible minority authors were represented at low proportions (15.2% for the VA CPGs and 6.4% for the US CPGs). The US CPGs, which we deliberately selected based on their low representation of women, also had a lower representation of visible minority authors than the VA CPGs—perhaps suggesting that gender bias may be associated with other forms of bias such as racial bias.
Beyond Gender, Race, and Ethnicity Identities
There are a number of other identity considerations, and although an in-depth discussion of identity goes beyond the scope of this report, we believe that it is important to mention two aspects understudied: disability and gender and sexual minority identities (i.e., lesbian, gay, bisexual, transexual, and queer or LGBTQ+).
People With Disability
There is a paucity of data on workforce disability; however, a report found that in a 6000-physician sample, 178 (3.1%) self-identified as having a disability.32 Of the 178, many also identified with other underrepresented groups (e.g., racial and ethnic minority, transgender) and, therefore, had intersectional identities. Doctors potentially underreport their own disability, and it is known that persons with disability are a large minority group, making up 10% of the earth’s population.33 In the US, nearly 1 in every 5 people has a disability, and that number is on the rise.34 Of adults with disabilities aged 21–64 yrs, only 41% were employed, compared with 79% of those in the same age range with no disability.35 Among the same age range of people with disabilities, more than double (10.8%) experienced prolonged poverty as compared with the same age range of persons without disability (3.8%).35
In contemplating the care of people with disabilities, it is important to consider the knowledge and standards of care used to treat this population and whether special considerations are required. Not all disabilities are equal, of course. Gaps in medical education of physicians to treat persons with disabilities propagate a healthcare workforce unprepared to care for this patient population.36 The inclusion of physician experts in treating patients with disabilities, such as physicians board certified in PM&R, would likely enhance the content in CPGs.
People Who Identify as Gender or Sexual Minorities
LGBTQ+ people in the US and beyond continue to experience bias and discrimination that contributes to worse healthcare outcomes, and a recent review stated:
“Gender and sexual minority individuals face considerable physical and mental health disparities, health risk factors, and barriers to care. These disparities are rooted in systemic and interpersonal prejudice, discrimination, and violence toward lesbian, gay, bisexual, transgender, queer, and other (LGBTQ+) individuals and communities that place LGBTQ+ individuals at increased risk for negative social determinants of health. While also advocating for systemic change, individual providers and clinics have an ethical duty to promote an openly affirming, culturally competent health care environment that can help to address these disparities on an individual patient level.”
37
Indeed, persistent and pervasive structural, political, cultural, and historical oppression of LGBTQ+ people continue to perpetuate healthcare disparities. The majority of CPGs focus on patient sex and gender, omitting other socially marginalized people, thereby creating differences and segregation rather than diversity and inclusion. Many CPGs do not address issues related to these populations, and there are few CPGs that focus specifically on LGBTQ+ health. Because CPGs are defined as “statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options,”11 it is deeply concerning that minimal evidence-informed guidelines exist, thereby possibly diminishing CPG-informed care.
The inclusion of LGBTQ+ experts as CPG authors is unknown. It is important to include subject matter experts on LGBTQ+ health issues as authors of guidelines that are intended for people who identify as heterosexual are neither created by nor created for individuals who identify as LGBTQ+ and cannot be transferred to caring for them.
Effects of a Lack of Diversity
Two important issues deserve further consideration: What is the effect of diverse author underrepresentation on (1) CPG content and resultant patient care? and (2) physicians’ academic careers?
The first question aimed at understanding the relationship between workforce and patient care disparities has been explored in previous reports and is understandably complex.38 Many studies have demonstrated increased morbidity, mortality, and functional outcomes among specific groups for rehabilitation-related conditions.7,8 Although causality for disparities, whether they are patient care or workforce related, is complex and multifaceted, it is important to note that there are relationships that exist among workers and patients. For example, women physicians and scientists are credited with much of the foundational work in the area of women’s health research and clinical care.39 All CPGs should recognize biological differences in sex (e.g., pregnancy, menstruation, hormones). Because, historically and currently, female adults are often underrepresented in clinical trials, it is important for CPG authors to analyze the existing research on sex differences and note gaps in the investigations as they relate to biologic sex. For women across the gender spectrum, such as transwomen, there may be physiologic differences (as compared with female or male adults who are not transgender) due to surgery, hormonal, or other medical interventions, and the physiology of various patient populations may impact treatment and other recommendations.
The second question focuses on how the lack of invitations and scholarly opportunities affects physicians’ academic careers. Participation in medical society activities is a standard part of academic promotions criteria, and for a physician who is seeking academic promotion, being an author on a CPG demonstrates subject matter expertise on a national (and sometimes international) level. Clinical practice guidelines are usually highly cited reports that contribute to Hirsch index and other metrics scores needed for promotion. The lost opportunities for underrepresented physicians to collaborate and network with the CPG authors likely have profound, though incalculable effects. Low representation for certain physician groups is a systemic problem in academic medicine that often demonstrates slow or no progress. For example, a recent study by Richter et al.40 found among women physicians at US medical schools that were promoted to associate or full professor, there has been little to no progress over the past 35 yrs. There is a robust body of literature demonstrating a lack of equitable pay41 and promotion40 for women physicians. Disparities for women physicians in PM&R are well documented,4,16,42,43 and physiatry data for physicians who identify with racial/ethnic minority groups are evolving.5,6
Although it seems that there were high numbers of CPGs that recognized SDOH, we found several CPGs used similar language to address gender and racial/ethnic issues did not elaborate beyond this statement: “The use of an empathetic and nonjudgmental approach facilitates discussions sensitive to gender, culture, ethnic, and other differences” (Appendix Table B, Supplemental Digital Content 2, https://links.lww.com/PHM/B441). Although we counted this statement in our analysis as recognizing SDOH, it may not change clinical implementation, and future guidelines may be strengthened by a more detailed discussion and/or examples of sex-related biologic differences and healthcare disparities for vulnerable populations such as has been recently done with the American Academy of Physical Medicine and Rehabilitation guidance statements for the postacute sequelae of SARS-CoV-2.44
Improving Diversity on Author Teams
Immediately Update Authoritative Reports That Guide the Development of CPGs
We found that none of the VA CPGs mentioned or recognized the necessity of a diverse CPG writing committee, and perhaps an underlying reason for this gap is the “Guideline for Guidelines,” published by the VA and Department of Defense as a roadmap for CPG development (revised in 2019),45 provides little guidance on workgroup composition beyond what was detailed in the abovementioned IOM report “Clinical Practice Guidelines We Can Trust.”11 Both of these authoritative reports were produced by the US federal government and need updating as soon as possible. Similarly, other reports that CPG committees rely on for guidance should be updated to specifically address both diverse author teams and scientific content aimed at improving outcomes for underrepresented groups.
Ensure There Is a Diverse Group of Authors Who are Content Experts
Every person and organization involved in the creation of CPGs should be sensitized to the serious issues associated with the lack of a diverse author team. Clinical practice guideline chairs are accountable for team composition—even if they did not personally select all of the members. Anyone involved can make an impact by raising the author diversity issue. We encourage those involved with CPG development to read and distribute this report as it covers many of the key concerns and provides an opportunity to have a conversation about diversity as it relates to CPG authors as well as content that should be included in the guideline itself. For example, the CPG title “Diagnosis and Treatment of Low Back Pain” was produced by the North American Spine Society. Although it is stated that contribution does not necessarily imply endorsement, the American Academy of Physical Medicine and Rehabilitation is listed as a Contributing society. Other prominent medical societies are also listed as participating societies, although not implying endorsement. Medical societies that are financially supported by doctors and their employers have an ethical responsibility to support their physician members and can assist CPG organizers in identifying a qualified diverse group of authors who may serve as subject matter experts.
Although consensus is an important factor in CPG production and diverse perspectives might slow the process as diverse teams may tend to focus more on facts and synthesize them more carefully46; nevertheless, the final product may be more innovative, and in the case of CPGs, more reliable. Therefore, we encourage CPG committees to be intentional about including experts on disability and LGBTQ+ issues and to also include experts on other topics such as Native/Indigenous Peoples’ health, correctional medicine, and religion. Comprehensive national and international plans to address issues of equity and social accountability are clearly needed, and organizations that undertake the responsibility of developing, endorsing, or otherwise supporting CPGs have the responsibility to ensure diverse authors are included, especially women physicians as they have been particularly underrepresented.
A strength of this report is that it is the first to conduct an analysis of CPGs related to rehabilitation medicine by assessing not only gender but also race and ethnicity. Limitations of our analysis include inability to account for the spectrum of ability, sexual or gender orientation, and other factors. Notably, the Gender API only notes binary gender options. For individuals for which photographs or Gender API was used, this inadvertently may have excluded nonbinary gender identifying individuals.
CONCLUSIONS
This is the first analysis to assess the gender, race, and ethnicity of authors of rehabilitation-related CPGs. We found gaps in the inclusion of women authors, particularly women physicians. Also notable is the underrepresentation of people who were coded as belonging to racial or ethnic minority groups, especially women physicians with intersectional identities (e.g., Black or Hispanic women physicians). The reasons for this have not been studied, nor has the impact on the content of the guidelines themselves and resultant delivery of patient care. Immediate actions are needed and may include revising federal guidance reports as well as individual and organizational accountability for ensuring diverse author teams.
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