® , Developing a Trust Research Agenda May 19, 2021 Meeting Report Developing a Trust Research Agenda Introduction health care focuses on the patient-clinician relationship, and that investigations into the nature of trust in other health care relation- As our health care system continues to rebuild from the COVID-19 ships, such as clinician-clinician, patient-organization, or clinician- crisis and confront the ongoing threats of structural racism and organization are under-developed. In addition, while commentaries inequality, trust has emerged as a vital issue to explore in efforts to about trust are common in the health care literature, more rigorous improve the nation's health and well-being.1 The foundation of any investigations, including developing robust theoretical frameworks, successful relationship, trust is key to ensuring positive health care mixed methods research, or intervention studies are significant op- interactions for both patients and clinicians. Building trust, not portunities for groundbreaking research. only between patients and their clinicians and health care system, but also between the public as a whole and the broader health care Dr. Platt and Dr. Taylor noted a number of additional gaps in the system, will be crucial to improving health care outcomes, increas- literature: ing patient satisfaction, and ensuring the well-being of health care professionals. This process will require additional investment, inter- •Although there is a great deal of research on patient trust in clini- est, and leadership in the area of trust research to ensure that health cians, there is a lack of consensus about the best measures of trust systems' and health professionals' actions and behaviors to promote regarding the doctor-patient relationship. Scales on mistrust are trust are evidence based. more robust. Additionally, research on patient trust in clinicians far outpaces research on clinician trust in patients. Through the Building Trust initiative, the ABIM Foundation aims to elevate the importance of trust as an essential organizing principle • The literature on clinician trust in other clinicians is relatively to guide improvements in health care. As a part of the initiative, the small, and most of this research focuses on competence as a ABIM Foundation and AcademyHealth convened approximately key determinant of trust. So, there are opportunities for greater 70 researchers, clinicians, patients, and funders on May 19, 2021, to exploration into how trust evolves between clinicians. begin developing a trust research agenda. The meeting focused on understanding the state of trust research and existing gaps in the • Research on patient or clinician trust in organizations and literature; identifying opportunities for trust research and building systems is also limited. In this area, financial interests may be a a research agenda; and beginning to establish a research com- determining factor, potentially affecting the level of trust that pa- munity devoted to advancing trust research. The meeting agenda tients have in health systems and organizations. It was also noted is included in Appendix 2, and the participant list is included in that there is a lack of clarity around definitions for systems versus Appendix 3. organizations, making it difficult to compare across studies. • In exploring issues of health equity, there is a need to challenge State of the Field narratives on trust and distrust. Most of the existing research in To orient participants to the current state of trust research, Jodyn this area focuses on Black/African American populations and Platt, Ph.D., University of Michigan and Lauren Taylor, Ph.D., their experiences of discrimination and racism eroding trust, The Hastings Center, presented preliminary findings from their while there is little research that addresses how health care recent literature review on trust. They explained the framework actors can build trust. Additionally, greater attention needs to for their review, shared their findings, and offered initial thoughts be paid to examining trust issues for other racial minorities and on the gaps and issues identified in light of the goal of informing a marginalized groups, such as the LGBTQI+ community. research agenda. • An area for robust growth is research on actions and practices that build trust. Most of the existing quantitative research focuses Literature Review Findings on the outcomes of trust (e.g., health, behaviors, satisfaction), but Defining trust as "a willingness to be vulnerable to another for a there is considerably less research on the inputs of trust (e.g., given set of tasks" (Mark Hall), the review covered literature pub- social, individual, behavioral) and how to build trust. lished on trust in health and health care between 1970 and 2020. To assess the breadth of research, the literature was organized accord- In closing, Dr. Platt and Dr. Taylor made a number of recommen- ing to (1) the entities in the trust relationship being examined; 2) dations to strengthen the trust research base. First, they suggested special topics such as health equity and misinformation and trust in that researchers consider a range of linear and non-linear theoreti- science; (3) the quantity of research within different trust relation- cal frameworks to guide future research, noting the dynamic and ships; and (4) whether trust is the input or outcome. The literature cyclical nature of trust relationships. Examining signals made by review confirmed that the preponderance of research on trust in 1 Developing a Trust Research Agenda the trustee or trustor that elicit trust or mistrust was described. Next, they emphasized the opportunity and need for interventional Developing a Research Agenda studies, in particular those that employ randomized and longitu- The remainder of the meeting was devoted to identifying and devel- dinal approaches. Finally, they provided cross-cutting guidance, oping research topics/questions that would further the trust agenda. suggesting researchers be as specific as possible when defining the Attendees discussed a host of potential research topics/questions in trust relationship. small groups, and each group identified approximately two research questions for further consideration by the broader group. The top- ics/questions put forth by each small group were compiled into an Participant Discussion overall list of 26 potential topics/questions. Attendees then voted on In reaction to the presentation, attendees provided their own their top three choices via an online prioritization process. The 10 thoughts on the current state of trust research and gaps in the research questions/topics receiving the most votes were selected for literature: further development in a subsequent set of small groups. Attendees • Echoing the findings in the literature review, attendees under- were able to select the research topic/question they wanted to focus scored the need to place a greater emphasis on exploring clini- on by joining the relevant small group. An overview of the top 10 cian trust in patients as well as caregivers. research topics/questions, edited for clarity and brevity, is provided below, followed by highlights from the subsequent small group • A point of particular interest for many attendees was the differ- discussions further developing each research question/topic. ence between trust and trustworthiness2. Participants noted that patients, especially those from marginalized communities, may Overview of Top 10 Research Topics/Questions by rightfully distrust health care entities, and therefore the impetus Level of Trust should perhaps be placed on organizations making themselves The list of top 10 research topics/questions is grouped accord- trustworthy and fixing unjust systems. As one participant noted: ing to level of trust-organizational, clinician, and patient and "it would be misguided to try to increase community. Although there is some overlap across the three levels individual patient trust in entities - particularly and goals of the proposed research questions, the topics/ques- systems - that are historically/currently tions have been categorized to indicate potential levels of focus for advancing trust efforts. The rank order has been retained within exploitative, abusive, or indifferent. … the these categories. Highlights from each group's discussion are orientation of a research and intervention included in Appendix 1. agenda should be to fix those systems, not encourage patients to increase their trust." Advancing Trust at the Organizational Level – Kellan Baker 1. What can organizations do to address influential structural determinants of distrust, such as partisanship and politicization, • Attendees consistently mentioned the need for researchers to structural racism, and systems of privilege in order to improve take a more nuanced and dynamic perspective when examining trust with patients and within their systems? trust issues, considering the multifaceted and reciprocal nature of trust in relationships. 2. How can trust be defined and measured at an organizational level, e.g., between patients and organization, community and • Participants also suggested leveraging and building on trust organization, employees and organization, and clinicians and research from other disciplines, such as psychology, social and organization? racial justice, African American studies, as well as related litera- ture on patient and community engagement. 3. Perform an analysis of positive deviance to identify fundamental drivers of optimal trust within organizations that have diverse • The importance of focusing on equity and recognizing the role of populations, studying signals at different levels, e.g., patient- power in this work was also raised, with an emphasis on priori- clinician, system-clinician, and system-community.3 tizing trust research among historically marginalized popula- tions, including racial and ethnic groups, the LGBTQI+ commu- 4. What are the policies, partnerships, and practices that constitute nity, and disabled individuals. trustworthiness of organizations? 2 Developing a Trust Research Agenda a. What is the impact of new organizations in new communi- partners, and funders. It should be noted that attendees may not ties? Mergers? Workforce-community concordance? Patient- have fully covered each of these considerations in their discussions. clinician concordance? Pipeline of trainees? Additionally, for research topics/questions that aimed to improve trust through an intervention, attendees also had the opportunity to 5. When organizational policies and values prevent clinicians from discuss the proposed interventions and outcomes. Key themes from providing the care they think they should provide, how does that the small group discussions are summarized below. affect their trust in organizations? Study Settings. Attendees proposed a variety of study settings a. What are the downstream effects of the loss of organizational depending on their research topic/question of interest, ranging trust on patient and clinician outcomes? from clinics, private practices, patient-centered medical homes, and home care to hospitals, health systems, and graduate medical edu- Advancing Trust at the Clinician Level cation to population-based studies and community-based research. 6. Why is trust in nurses consistently high vs "noisy" (or inconsis- One group specifically emphasized the importance of focusing on tent) trust estimates in physicians--why the disparate scores and the community and equity in this work. consistency? (correlate: why is trust in nurses more global and trust in physicians more personal?) Populations of Focus. A wide variety of study populations was proposed, with an emphasis on groups that have historically expe- 7. One of the drivers of patient trust is the perception that the doc- rienced lower levels of trust, including racial and ethnic minorities; tor cares about them. How does a clinician convey that they care low-income populations; LGBTQI+ patients; and people with dis- about a patient? abilities or mental illnesses. Other potential populations included a. What are the things they do or don't do? What are the behav- patients with chronic conditions, as well as those who avoid the iors, language, attributes? health system altogether because of a lack of trust. The idea of starting with and focusing on the community was also raised. At b. What makes patients trust their clinician more, and what the clinician level, the following groups were proposed: physicians, would diminish or threaten that trust? nurses, physician assistants, nurse practitioners, other staff, white clinicians, clinicians of color, primary care, specialty care, and those c. What underlies trust? Where is the locus of trust, mistrust, with different gender identities. confidence? Data and Measures. Attendees engaged in rich discussions about 8. What is the level of trust clinicians have in patients and their the kinds of data and measures that would be needed to address caregivers, and what interventions might most meaningfully trust. Many started with the importance of first defining and then increase that trust? exploring measurement of the key concepts of trust and trust- worthiness. Attendees also emphasized the importance of starting Advancing Trust at the Patient and Community Level with patients and the community in defining trust and developing 9. What are longitudinal trends in trust at the population level, and measures. The need to include measures of racism was also raised what factors affect change in trust? to ensure grounding in this frame. The use of positive deviance as an approach was explored, including the use of existing surveys, 10. What are the frames (e.g., patients, communities, institutions, such as the Consumer Assessment of Healthcare Providers and or policies) for advancing trust that would have the biggest Systems (CAHPS) survey and safety culture surveys, to identify impact on health equity? areas in health systems that already exhibit high levels of trust. At- tendees also noted the need for a variety of trust-related measures, a. How can we center the community and their needs? including measures of trust in individual physicians, physician trust in patients, relationship measures, institutional trust measures, and Key Considerations Across Research patient-reported outcomes, among others. Topics/Questions Methods. The importance of using both quantitative and qualita- A broad range of considerations emerged from the small group tive methods was highlighted across many of the proposed study discussions in which attendees further developed the top 10 re- areas. Specifically, attendees noted the value of surveys to under- search topics/questions. Each small group had the opportunity to stand general perceptions, and interviews or focus groups to better explore the following aspects for a given research topic/question: understand patient experiences or health professional perspectives. study settings, populations of focus, data and measures, methods, Longitudinal studies would allow for more robust research on trust. 3 Developing a Trust Research Agenda Other proposed methods included participant observation; audio- comes. At the clinician level, increased trust towards patients and or video-recorded interactions; ethnographic research; appreciative families was also highlighted as an outcome. inquiry; artificial intelligence to discover positive deviants; and text analysis for trust/respect, for example in the news media or chart notes. The use of process mapping/systems science was also pro- Conclusion and Next Steps posed to understand potential barriers to trust, such as requiring As highlighted throughout the course of the day, a key area of clinicians to log in to their computers upon entering an exam room, focus for advancing trust research lies at the organizational level. taking focus away from the patient. Another suggestion specifically Although individual relationships between clinicians and patients emphasized: remains an important area of study, greater emphasis should be placed on examining trust at a systems level with a focus on struc- "engaging patients/families early, often, and tural interventions. Such a focus is especially timely and critical, intensively in every phase of the research." as many health care organizations are rebuilding from COVID-19 and must also address the persistent issues of structural racism – Notes from working group and discrimination. As the past year has so clearly demonstrated, Partners. Attendees suggested a variety of potential partners, the foundation of trust in health care does not exist for many including organizational leadership, clinicians, and staff; profes- communities, and because the conditions in which people are sional societies; patients and families; multistakeholder advisory born and live impact their trust overall, structural approaches to groups; community organizations; and government agencies. The building trust are paramount. ABIM Foundation and the Institute for Healthcare Improvement were named as potential partners. Attendees also highlighted the The overall health care system and health care organizations must importance of including perspectives from other sectors outside of be designed to support and engender trust. Health care organi- health care whose work is also affected by trust, for example, public zations play a substantial role not only in care delivery, but in health, social justice, and citizen science with a focus on public establishing the overall health care context and culture. Indeed, understanding of science.4 One group suggested partners: health care organizations have the capacity and influence to affect change, drawing on their direct connections to patients, with the "that could help [with] having the necessary potential for large-scale impact. A focus on research at the orga- conversations about historical and structural nizational level would also allow for other levels to be addressed, racism and equity issues." including patients and the community, as well as clinicians. Research on trust, even if conducted at the level of a health care – Notes from working group organization, must center the needs of patients and communities, Funders. Attendees indicated a range of funders to approach, and include a focus on equity. including those interested in health equity, quality improvement, complex care, patient-centered care, public health, justice, and Building on the themes that emerged from the meeting, the ABIM environmental health, among others. Foundation and AcademyHealth will continue to lay the ground- work for advancing research on trust. We will explore the current Interventions (if applicable). Research topics/questions that ad- landscape for trust research and funding through a review of the dressed interventions included a focus on motivational interview- HSRProj (Health Services Research Projects in Progress) database ing as a counseling approach, user-centered design, and building a to review trust research that is currently underway. This will be culture among clinicians and staff that is trusting of patients. complemented by key informant interviews with leaders from public and private funding agencies to gain a better understanding of their funding priorities as they relate to trust and trust-related Outcomes (if applicable). While the main outcome for studies that research. We will also promote the trust research agenda more included an intervention was increasing patient trust, other poten- broadly and focus on building a research community around trust. tial outcomes for patients included improved adherence, follow-up, preventive care, quality of life, self-rated health, and clinical out- 4 Developing a Trust Research Agenda Appendix 1: Top 10 Research Topics/Questions – Highlights from Small Group Discussions Advancing Trust at the Organizational Level across departments within one health care organization, for ex- 1.What can organizations do to address influential structural ample, to understand which service units have higher scores on determinants of distrust, such as partisanship and politiciza- the Consumer Assessment of Healthcare Providers and Systems tion, structural racism, and systems of privilege in order to (CAHPS) or safety culture surveys. While this study would be improve trust with patients and within their systems? descriptive in nature, it could serve as a bridge to interventional studies to further determine how to build trust. Group one proposed exploring societal and structural deter- minants with the purpose of improving trust more concretely 4.What are the policies, partnerships, and practices that consti- within health care organizations. While clinician-patient fac- tute trustworthiness of organizations? tors were certainly noted as relevant, the group highlighted the value of organizational outreach to communities, ensuring that a.What is the impact of new organizations in new communi- the heterogeneity and intersectionality of different subpopu- ties? Mergers? Workforce-community concordance? Patient- lations is considered. Potential research methods included a clinician concordance? Pipeline of trainees? mixed methods approach, as well as ethnographic research. The Group four focused on trustworthiness and exploring what challenges of addressing overlapping factors, such as individual makes a health care organization worthy of trust. The group pro- and system level factors, was raised. The group also recom- posed that health care organizations conduct a self-examination mended drawing on other relevant literature from such areas as of their inequities in practice (e.g., related to trust) by looking at cultural humility or literature on racism to inform this work. a variety of indicators. The findings from this work could then be shared with stakeholders, including patients and the community, 2.How can trust be defined and measured at an organizational with the goal of working with them to explore how best to address level, e.g., between patients and organization, community the issues that were identified. This small group also discussed and organization, employees and organization, and clini- the potential for building trust between health care organizations cians and organization? and their communities through greater workforce concordance. Group two focused on defining and measuring trust. They Health care organizations could partner with communities, par- proposed a study in a clinical setting within a larger health care ticularly high schools and colleges, as a way to develop a pipeline organization. Given that trust is a relatively underdeveloped of health care workers that are part of the community. research area, the group suggested a mixed methods approach, starting with qualitative work to better understand how people 5.When organizational policies and values prevent clinicians think about trust. This information would then be used to de- from providing the care they think they should provide, how velop and test operational measures. Group one also highlighted does that affect their trust in organizations? the importance of understanding how history, social issues, and a.What are the downstream effects of the loss of organiza- structural aspects of equity affect trust, and noted the importance tional trust on patient and clinician outcomes? of including partners that could bring these issues to the fore. In Group five focused on the desire of clinicians to provide the best terms of funding, it was noted that the health care organization at possible care to their communities and their patients within the the center of the study may be interested in funding this work. context of structural barriers that may not always facilitate that kind of care. The group proposed a mixed methods approach 3.Perform an analysis of positive deviance to identify funda- that would involve clinicians, staff, and patients, as well as those mental drivers of optimal trust within organizations that have setting policy, such as health care executives or the health system diverse populations, studying signals at different levels, e.g., board of directors. The study would start with participant patient-clinician, system-clinician, and system-community. observation or focus group work with clinicians and staff to Group three discussed the need to first identify what represents identify underlying issues. This information would then be used positive deviance and those who may be performing better on to develop and field surveys, such as clinician questionnaires on trust-related measures, and then exploring what can be learned burnout. The research would be focused on identifying interven- from any existing trust-enhancing activities. The research ques- tions for how health care systems can provide a better workplace tion could be explored in a specific clinical area, such as emer- that fosters trust and teamwork, ultimately leading to better gency department settings across health care organizations, or health care outcomes for patients and communities. 5 Developing a Trust Research Agenda Advancing Trust at the Clinician Level 8.What is the level of trust clinicians have in patients and their 6.Why is trust in nurses consistently high vs "noisy" (or incon- caregivers, and what interventions might most meaningfully sistent) trust estimates in physicians--why the disparate scores increase that trust? and consistency? (correlate: why is trust in nurses more global Noting that clinician trust in patients remains an understudied area and trust in physicians more personal?) with only one key existing measure, group eight proposed a multi- Group six proposed a two-by-two research design examining disciplinary approach with deep patient and family engagement to how patients may have differing levels of trust in nurses versus explore clinician trust in patients and caregivers. The study would physicians, and how the level of trust may also vary between a include a needs assessment phase, followed by a series of interven- patient's personal experience with their own doctors or nurses tions informed by implementation science and rapid evaluation, versus their perspectives on doctors or nurses more generally. with the goal of developing a measure to assess clinicians' trust in The inclusion of nurse practitioners was suggested as a particular patients. The importance of examining various types and levels of focused comparison because their scope may resemble that of clinicians and administrative staff was emphasized. The group also physicians, yet they are still labeled as nurses, who are gener- acknowledged the importance of looking at the role of concordance ally more trusted than physicians. The study methods would across race and other attributes, such as gender identity. include a set of closed-ended questions to ascertain the kinds of attributes for which patients may trust either party, such as a Advancing Trust at the Patient and Community Level correct diagnosis or having the patient's best interests at heart. 9.What are longitudinal trends in trust at the population level, Open-ended questions could then be used to ask patients to and what factors affect change in trust? reflect on their experiences. The study design was noted to have Group nine proposed a national, population-based trust study to broad applicability across settings, for example inpatient versus assess patients' trust in clinicians and institutions over time. The outpatient, community health center versus non-salaried, etc. study would include oversampling to capture underrepresented populations and would follow individuals longitudinally for a pe- 7.One of the drivers of patient trust is the perception that the riod of at least five years, although the study could go on for much doctor cares about them. How does a clinician convey that longer, potentially spanning generations, similar to the Framing- they care about a patient? ham Study. Using surveys, as well as interviews and focus groups, a.What are the things they do or don't do? What are the be- the study would capture people's experiences of trust in the overall haviors, language, attributes? health system, e.g., interactions with clinicians, the emergency room, insurance companies, etc. The information collected could b.What makes patients trust their clinician more, and what be temporally linked to secular events, such as a crime or a catastro- would diminish or threaten that trust? phe, to assess how such events may impact trust. Given the broad c. What underlies trust? Where is the locus of trust, mistrust, relevance of trust issues, the study could involve multiple sectors, confidence? such as public health and law enforcement. Group seven focused on how doctors convey that they care about their patients. The group proposed a multi-site study 10.What are the frames (e.g., patients, communities, institutions, across many types of settings, including ambulatory, inpatient, or policies) for advancing trust that would have the biggest home care, and specialties. Individuals from outside of health impact on health equity? care would also be recruited to capture those who may elect a.How can we center the community and their needs? not to seek care. The importance of ensuring diverse perspec- tives and representation from more marginalized populations Group ten emphasized the importance of equitable partner- who may be less likely to be treated in a caring manner was ships and equitable funding as a starting point for trust work also emphasized. Qualitative methods were proposed, such as and research. They noted that defining trust should occur at patient interviews, focus groups with patients, and recorded the community level, by asking communities what their idea of interactions with health professionals. The group also dis- trust is and how they think it can be achieved. At the same time, cussed the importance of considering systemic barriers. The the group cautioned against putting the onus on communities potential for developing a measure for a culture of respect was to solve problems that have been imposed on them. The group proposed as a way to identify areas where interventions may also discussed the role of broader societal issues, such as how the be needed to ensure patients are treated with more care. political climate can influence trust. For example, they cited how vaccine hesitancy may have more to do with distrust in govern- ment policies, whereas health care organizations may be held accountable for vaccination numbers. 6 Developing a Trust Research Agenda Appendix 2: Meeting Agenda Aims 1. Review a literature review of articles about trust to be aware of the state of research and identify gaps. 2. Identify opportunities for research related to trust and build a research agenda based on topics of interest to the researchers in the room. 3. Begin to establish a research community devoted to advancing research on trust. Trust Research Agenda Meeting May 19, 2021 from 10:30 AM-4:00 PM ET AGENDA 10:30-10:40Welcome Speakers: Rich Baron, Lisa Simpson and Daniel Wolfson 10:40-10:50 Impromptu Networking Moderator: Daniel Wolfson Goal: Identify area of interest in trust and share article about trust (optional) 10:50-11:30 Review of Literature on Trust/Q&A Moderator: Daniel Wolfson Presenters: Jodyn Platt, University of Michigan and Lauren Taylor, Hastings Center Goals: Provide a framework and results of review of the literature on trust & offer initial thoughts on gaps and issues identified 11:30-12:20 Small Groups and Large Group Discussion Moderator: Lisa Simpson Goal: Identify research topics/questions 12:20-12:30 Summary of the Morning and Plan for Second Session Speakers: Lisa Simpson and Daniel Wolfson Adjourn12:30-1:30 1:30-2:05 Prioritize Research Questions and Opportunities Moderator: Lisa Simpson Goal: Discuss and rank opportunities for research in trust 2:05-2:15 Break 2:15-3:00 Research Question/Topic Development Moderator: Lisa Simpson 3:00-3:55 Group Discussion of Prioritized Topics Moderator: Daniel Wolfson Each group presents one research question 3:55-4:00 Summary of Meeting and Next Steps Speakers: Daniel Wolfson and Lisa Simpson 7 Developing a Trust Research Agenda Appendix 3: Meeting Attendees Mercy Adetoye Patricia Conolly Fellow Physician - University of Michigan Physician Phillip Alberti Deidra Crews Founding Director, AAMC Center for Health Justice - Association Professor of Medicine - Johns Hopkins University of American Medical Colleges School of Medicine David Atkins Paul Crits-Christoph Director, Health Services Research and Development - Professor - Perelman School of Medicine, Department of Veterans Affairs University of Pennsylvania Kellan Baker Gwen Darien Centennial Scholar - Johns Hopkins Bloomberg School Executive Vice President, Patient Advocacy and Engagement - Na- of Public Health tional Patient Advocate Foundation/Patient Advocate Foundation Richard Baron Joyce Dubow President and CEO - American Board of Internal Consumer/Patient Advocate Medicine and The ABIM Foundation Maura Dugan Mary Catherine Beach Research Assistant - AcademyHealth Professor - Johns Hopkins University Susan Edgman-Levitan Ramona Benkert Executive Director - The John D. Stoeckle Center for Primary Care Interim Dean and Professor - Wayne State University Innovation; Co-chair MGB Patient Experience Leaders - MGH Stoeckle Center for Primary Care Innovation Laura Bogart Senior Behavioral Scientist - RAND Corporation Richard Frankel Professor of Medicine and Geriatrics - Indiana Clarence Braddock III University School of Medicine Professor of Medicine and Vice Dean for Education - David Geffen School of Medicine at UCLA Lynne Garner President – The Donaghue Foundation Kate Carmody Program Associate - The ABIM Foundation Marianne Green Vice Dean for Medical Education - Northwestern Medical Group Marshall Chin Richard Parrillo Family Professor of Healthcare Ethics - University Jessica Greene of Chicago Professor & Luciano Chair of Health Care Policy - Baruch College, City University of New York Bonnie Cluxton Vice President - AcademyHealth Derek M. Griffith Co-Founder and Co-Director - Racial Justice Institute; Professor, David Coleman Health Systems Administration - Georgetown University John Wade Professor and Chair, Department of Medicine; Physi- cian in Chief - Boston Medical Center 8 Developing a Trust Research Agenda Rachel Grob Kedar Mate Director of National Initiatives, Senior Scientist, Clinical Professor - President and CEO - Institute for Healthcare Improvement University of Wisconsin Madison David Meyers Reshma Gupta Deputy Director - Agency for Healthcare Research and Quality Executive Medical Director of Value and Population Care - Univer- sity of California Health Sarah Millender Research Assistant - AcademyHealth Mark Hall Professor of Law & Public Health - Wake Forest University Tara Montgomery Founder/Principal - Civic Health Partners Leora Horwitz Director, Center for Healthcare Innovation and Delivery Science - Paige Nong NYU Langone Health PhD Student – University of Michigan School of Public Health Holly Humphrey Jacquelynn Orr President - Josiah Macy Jr. Foundation Program Officer, Research Evaluation Learning – Robert Wood Johnson Foundation Jacqueline Judd Communications Consultant Sachiko Ozawa Associate Professor - University of North Carolina Marya Khan Senior Manager - AcademyHealth Susan Perez Associate Professor - California State University, Sacramento Richard Kravitz Professor and Director - UC Davis Division of General Medicine Robert Phillips and University of California Center, Sacramento Executive Director, The Center for Professionalism & Value in Health Care - American Board of Family Medicine Sarah Krug CEO - Health Collaboratory & CANCER101 Jodyn Platt Assistant Professor of Learning Health Sciences - University of Mark Linzer Michigan Medical School Vice Chair, Department of Medicine and Director, Institute for Professional Worklife - Hennepin County Medical Center Chris Queram Interim President & CEO - National Quality Forum Tim Lynch Senior Director of Foundation Programs – The ABIM Foundation Kelly Rand Program Officer - The ABIM Foundation Lorna Lynn Vice President of Medical Education Research - American Board of David Reuben Internal Medicine Chief, Division of Geriatrics - David Geffen School of Medicine at UCLA Jeanne Marrazzo Director, Division of Infectious Diseases - University of Alabama at Cynda Rushton Birmingham School of Medicine Anne & George Bunting Professor of Clinical Ethics & Professor of Nursing - Johns Hopkins University Berman Institute of Bioethics Laurie Martin & School of Nursing Senior Policy Researcher - RAND Corporation 9 Developing a Trust Research Agenda Anita Samarth Christine Sinsky CEO & Co-Founder - Clinovations Government + Health Vice President, Joy in Medicine - American Medical Association David Schleifer Mildred Solomon Director Research - Public Agenda President – the Hastings Center; Professor of Global Health and Social Medicine – Harvard Medical School Mark Schlessinger Professor of Health Policy - Yale School of Public Health Brian Southwell Senior Director, Science in the Public Sphere Program, Center for Eric Schneider Communication Science - RTI International Senior Vice President for Policy and Research - Commonwealth Fund Darlene Tad-y Physician - Colorado Hospital Association Karen Sepucha Associate Professor - Harvard Medical School Lauren Taylor Post-Doctoral Fellow - NYU Grossman School of Medicine and Neel Shah The Hastings Center Director, Deliver Decisions Initiative - Harvard Medical School Leslie Tucker Leigh Simmons Consultant - The ABIM Foundation Medical Director, Health Decision Sciences Center - Mass General Hospital Antonia Villarruel Professor and Margaret Bond Simon Dean of Nursing - University Lisa Simpson of Pennsylvania School of Nursing President and CEO - AcademyHealth Daniel Wolfson Executive Vice President and COO - The ABIM Foundation 10 Developing a Trust Research Agenda Acknowledgement 3. "Positive Deviance (PD) refers to a behavioral and social change approach which is premised on the observation that in any AcademyHealth and the ABIM Foundation would like to thank context, certain individuals confronting similar challenges, con- Jessica Greene, Ph.D., Baruch College, City University of New straints, and resource deprivations to their peers, will nonetheless York, Jodyn Platt, Ph.D., University of Michigan, and Lauren employ uncommon but successful behaviors or strategies which Taylor, Ph.D., The Hastings Center and NYU Grossman School of enable them to find better solutions. Through the study of these Medicine for their review of this report. individuals– subjects referred to as 'positive deviants' - the PD approach suggests that innovative solutions to such challenges Endnotes may be identified and refined from their outlying behavior." (https://www.betterevaluation.org/en/plan/approach/positive_ 1. Structural racism (or structural racialization) is racial bias deviance) across institutions and society. It describes the cumulative and compounding effects of an array of factors that systematically 4. "In citizen science, the public participates voluntarily in the sci- privilege white people and disadvantage people of color. (https:// entific process, addressing real-world problems in ways that may unityfirst.com/2019/the-language-of-inclusion/) include formulating research questions, conducting scientific experiments, collecting and analyzing data, interpreting results, 2. Trustworthiness is defined as being worthy of confidence (Mer- making new discoveries, developing technologies and applica- riam Webster). tions, and solving complex problems." (https://www.citizen- science.gov/#) 11