Development and Validation of the Perceptions of Research Trustworthiness Scale to Measure Trust Among Minoritized Racial and Ethnic Groups in Biomedical Research in the US

Abstract

ImportanceHistorically, trust in biomedical research has been lower among minoritized racial and ethnic groups who are underrepresented in and excluded from research, with the same groups experiencing worse health outcomes. Unfortunately, instruments that measure trust may not capture components of trust relevant to minoritized racial and ethnic groups.ObjectiveTo develop and validate a scale to measure trust in biomedical research among minoritized racial and ethnic groups.Design, Setting, and ParticipantsThis cross-sectional, community-based survey study compared trust and distrust in biomedical research among Black, Latino, and White subgroups in the US using the Perceptions of Research Trustworthiness (PoRT) scale. The scale was developed between March 22, 2016, and September 19, 2018, as part of this study, and its structure, reliability, and validity were examined during pilot (n = 381) and validation (n = 532) phases between February 4, 2019, and July 27, 2021. Convenience samples of adult participants (aged ≥18 years) were recruited locally (Nashville, Tennessee, and San Antonio, Texas) and nationally through the ResearchMatch and Cint online platforms.Main Outcomes and MeasuresOverall and individual item Trust and Distrust subscale scores were compared. Overall Trust and Distrust scores were compared by race and ethnicity using a Kruskal-Wallis H test and individual item scores were compared using independent samples t test.ResultsOf the 532 participants in the scale validation study, 144 (27.1%) were Black, 90 (16.9%) were Latino, and 282 (53.0%) were White. Participants had a median age of 43 years (range, 18-90 years), 352 (66.2%) were women, and 198 (37.2%) had educational attainment levels less than a college degree. Factor analysis of the 18-item PoRT scale revealed a 2-factor structure with two 9-item PoRT subscales (Trust and Distrust), which demonstrated high internal consistency (Cronbach α = 0.72 and 0.87, respectively). Mean (SD) Trust subscale scores were lower among Black (34.33 [2.02]) and Latino (34.55 [1.97]) participants compared with White participants (36.32 [1.81]; P < .001). Mean (SD) Distrust subscale scores were higher among Black (21.0 [2.15]) and Latino (20.53 [2.21]) participants compared with White participants (18.4 [2.03]; P < .001). Individual item results showed that Black and Latino participants were less trusting and more distrusting than White individuals on items related to risks, harms, secrecy, confidentiality, and privacy.Conclusions and RelevanceThese findings suggest that the PoRT scale incorporates trust and trustworthiness concepts relevant among Black and Latino individuals and may allow more precise assessment of trust in research among these groups.

“It Can’t Hurt!”: Why Many Patients With Limited Life Expectancy Decide to Accept Lung Cancer Screening

“…We theorize that this was due to a combination of factors including the predominantly male Veteran population, site selection, the absence of oversampling, and distrust in research. 47,48 Nevertheless, this study echoed results of both VA and non-VA studies with more diverse patient demographics in finding pro-screening attitudes and a lack of understanding of the LCS continuum and potential harms. 33,49,50 We relied on data generated from electronic health record clinical reminders to identify Veterans who agreed vs declined LCS; yet, it is probable that clinicians completed some clinical reminders incorrectly such that they did not accurately reflect actual patient decisions.…”

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“…Some examples include the Index of Race‐Related Stress and its brief version, 49,50 the Everyday Discrimination Scale (a 9‐item scale that includes race‐related discrimination and general stress), 51 and the PhenX data collection worksheet on major experiences of discrimination, 52 among others 53 . Trust in biomedical research can also be measured using validated tools, such as the Perceptions of Research Trustworthiness Scale 54 . When analyzing and reporting research findings, we should remember that races and ethnicities are social constructs that go deeper than the skin.…”

“…53 Trust in biomedical research can also be measured using validated tools, such as the Perceptions of Research Trustworthiness Scale. 54 When analyzing and reporting research findings, we should remember that races and ethnicities are social constructs that go deeper than the skin. Research seeking to liberate historically marginalized populations must include the study of their lived experiences of oppression.…”

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“…This was based in part on data derived from the Research Participant Perception Survey (RPPS) developed at Rockefeller [13,14], which have consistently demonstrated the high-value research participants place on receiving research results, as well as recommendations from the Secretary's Advisory Committee on Human Research Protection, the revised Common Rule, and the landmark 2018 National Academies of Sciences, Engineering, and Medicine report recommending a paradigm shift for return of research results [15][16][17]. Thus, return of results, which has often been neglected, is not only a crucial element of dissemination but also an important element in showing respect for research participants as partners in the research process and demonstrating that the institution is worthy of participant and public trust [18][19][20]. (2) "Data Sharing."…”

“…to ensure that protocols are informative and collectively decided to add three additional criteria: (1) “Return of results.” This was based in part on data derived from the Research Participant Perception Survey (RPPS) developed at Rockefeller [ 13 , 14 ], which have consistently demonstrated the high-value research participants place on receiving research results, as well as recommendations from the Secretary’s Advisory Committee on Human Research Protection, the revised Common Rule, and the landmark 2018 National Academies of Sciences, Engineering, and Medicine report recommending a paradigm shift for return of research results [ 15 – 17 ]. Thus, return of results, which has often been neglected, is not only a crucial element of dissemination but also an important element in showing respect for research participants as partners in the research process and demonstrating that the institution is worthy of participant and public trust [ 18 – 20 ]. (2) “Data Sharing.” This was based on the recognition that beyond reporting aggregate results, there is a need for sharing primary data and metadata to ensure transparency and reproducibility of research results and to facilitate the conduct of additional analyses (e.g., meta-analysis) by other investigators.…”