Shared Access to Adults' Patient Portals: A Secret Shopper Exercise.

BACKGROUND: Millions of Americans manage their healthcare with the help of a trusted individual. Shared access to a patient's online patient portal is one tool that can assist their care partner(s) in gaining access to the patient's health information and allow for easy information exchange with the patient's care team. Shared access provides care partners with a validated and secure method for accessing the patient's portal account using their own login credentials. Shared access provides extra privacy protection and control to the patient, who designates which individuals can view their record. It also reduces confusion for the care team when interacting with the care partner via the portal. Shared access is underutilized among adult patients' care partners. OBJECTIVE: Investigate the process of granting or receiving shared access at multiple healthcare organizations in the U.S. to learn about barriers and facilitators experienced by patients and care partners. METHODS: The Shared Access Learning Collaborative undertook a "Secret Shopper" exercise. Participants attempted to give or gain shared access to another adult's portal account. After each attempt they completed a 14-question survey with a mix of open and closed-ended questions. RESULTS: Eighteen participants attempted to grant or receive shared access a total of 24 times. Fifteen attempts were successful. Barriers to success included requiring paper forms with signatures, lack of knowledgeable staff, lack of access to technical support, and difficult-to-navigate technology. Facilitators included easy-to-navigate online processes and accessible technical help. Participants who were successful in gaining shared access reported feeling more informed and able to engage in shared decision-making. CONCLUSIONS: The outcomes of our secret shopper exercise underscore the importance of collaboration aimed at learning from diverse encounters and disseminating best practices. This is essential to address technical, informational, and organizational obstacles that may impede the widespread and accessible adoption of shared access.

Typology of solutions addressing diagnostic disparities: gaps and opportunities.

OBJECTIVES: Diagnostic disparities are preventable differences in diagnostic errors or opportunities to achieve diagnostic excellence. There is a need to summarize solutions with explicit considerations for addressing diagnostic disparities. We aimed to describe potential solutions to diagnostic disparities, organize them into an action-oriented typology with illustrative examples, and characterize these solutions to identify gaps for their further development. METHODS: During four human-centered design workshops composed of diverse expertise, participants ideated and clarified potential solutions to diagnostic disparities and were supported by environmental literature scan inputs. Nineteen individual semi-structured interviews with workshop participants validated identified solution examples and solution type characterizations, refining the typology. RESULTS: Our typology organizes 21 various types of potential diagnostic disparities solutions into four primary expertise categories needed for implementation: healthcare systems' internal expertise, educator-, multidisciplinary patient safety researcher-, and health IT-expertise. We provide descriptions of potential solution types ideated as focused on disparities and compare those to existing examples. Six types were characterized as having diagnostic-disparity-focused examples, five as having diagnostic-focused examples, and 10 as only having general healthcare examples. Only three solution types had widespread implementation. Twelve had implementation on limited scope, and six were mostly hypothetical. We describe gaps that inform the progress needed for each of the suggested solution types to specifically address diagnostic disparities and be suitable for the implementation in routine practice. CONCLUSIONS: Numerous opportunities exist to tailor existing solutions and promote their implementation. Likely enablers include new perspectives, more evidence, multidisciplinary collaborations, system redesign, meaningful patient engagement, and action-oriented coalitions.

Patient-reported outcome and experience domains for diagnostic excellence: a scoping review to inform future measure development.

PURPOSE: "Diagnostic excellence," as a relatively new construct centered on the diagnostic process and its health-related outcomes, can be refined by patient reporting and its measurement. We aimed to explore the scope of patient-reported outcome (PRO) and patient-reported experience (PRE) domains that are diagnostically relevant, regardless of the future diagnosed condition, and to review the state of measurement of these patient-reported domains. METHODS: We conducted an exploratory analysis to identify these domains by employing a scoping review supplemented with internal expert consultations, 24-member international expert convening, additional environmental scans, and the validation of the domains' diagnostic relevance via mapping these onto patient diagnostic journeys. We created a narrative bibliography of the domains illustrating them with existing measurement examples. RESULTS: We identified 41 diagnostically relevant PRO and PRE domains. We classified 10 domains as PRO, 28 as PRE, and three as mixed PRO/PRE. Among these domains, 19 were captured in existing instruments, and 20 were captured only in qualitative studies. Two domains were conceptualized during this exploratory analysis with no examples identified of capturing these domains. For 27 domains, patients and care partners report on a specific encounter; for 14 domains, reporting relates to an entire diagnostic journey over time, which presents particular measurement opportunities and challenges. CONCLUSION: The multitude of PRO and PRE domains, if measured rigorously, would allow the diagnostic excellence construct to evolve further and in a manner that is patient-centered, prospectively focused, and concentrates on effectiveness and efficiency of diagnostic care on patients' well-being.

Patient Reasoning: Patients' and Care Partners' Perceptions of Diagnostic Accuracy in Emergency Care.

OBJECTIVES: In the context of validating a measure of patient report specific to diagnostic accuracy in emergency department or urgent care, this study investigates patients' and care partners' perceptions of diagnoses as accurate and explores variations in how they reason while they assess accuracy. METHODS: In February 2022, we surveyed a national panel of adults who had an emergency department or urgent care visit in the past month to test a patient-reported measure. As part of the survey validation, we asked for free-text responses about why the respondents indicated their (dis)agreement with 2 statements comprising patient-reported diagnostic accuracy: 1) the explanation they received of the health problem was true and 2) the explanation described what to expect of the health problem. Those paired free-text responses were qualitatively analyzed according to themes created inductively. RESULTS: A total of 1,116 patients and care partners provided 982 responses coded into 10 themes, which were further grouped into 3 reasoning types. Almost one-third (32%) of respondents used only corroborative reasoning in assessing the accuracy of the health problem explanation (alignment of the explanation with either test results, patients' subsequent health trajectory, their medical knowledge, symptoms, or another doctor's opinion), 26% used only perception-based reasoning (perceptions of diagnostic process, uncertainty around the explanation received, or clinical team's attitudes), and 27% used both types of reasoning. The remaining 15% used general beliefs or nonexplicated logic (used only about accurate diagnoses) and combinations of general reasoning with perception-based and corroborative. CONCLUSIONS: Patients and care partners used multifaceted reasoning in their assessment of diagnostic accuracy. IMPLICATIONS: As health care shifts toward meaningful diagnostic co-production and shared decision making, in-depth understanding of variations in patient reasoning and mental models informs use in clinical practice. HIGHLIGHTS: An analysis of 982 responses examined how patients and care partners reason about the accuracy of diagnoses they received in emergency or urgent care.In reasoning, people used their perception of the process and whether the diagnosis matched other factual information they have.We introduce "patient reasoning" in the diagnostic measurement context as an area of further research to inform diagnostic shared decision making and co-production of health.

Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.

BACKGROUND: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited. OBJECTIVE: We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. METHODS: In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs. RESULTS: Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits. CONCLUSIONS: Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.

"It's probably an STI because you're gay": a qualitative study of diagnostic error experiences in sexual and gender minority individuals.

BACKGROUND: There is a critical need to identify specific causes of and tailored solutions to diagnostic error in sexual and gender minority (SGM) populations. PURPOSE: To identify challenges to diagnosis in SGM adults, understand the impacts of patient-reported diagnostic errors on patients' lives and elicit solutions. METHODS: Qualitative study using in-depth semistructured interviews. Participants were recruited using convenience and snowball sampling. Recruitment efforts targeted 22 SGM-focused organisations, academic centres and clinics across the USA. Participants were encouraged to share study details with personal contacts. Interviews were analysed using codebook thematic analysis. RESULTS: Interviewees (n=20) ranged from 20 to 60 years of age with diverse mental and physical health symptoms. All participants identified as sexual minorities, gender minorities or both. Thematic analysis revealed challenges to diagnosis. Provider-level challenges included pathologisation of SGM identity; dismissal of symptoms due to anti-SGM bias; communication failures due to providers being distracted by SGM identity and enforcement of cis-heteronormative assumptions. Patient-level challenges included internalised shame and stigma. Intersectional challenges included biases around factors like race and age. Patient-reported diagnostic error led to worsening relationships with providers, worsened mental and physical health and increased self-advocacy and community-activism. Solutions to reduce diagnostic disparities included SGM-specific medical education and provider training, using inclusive language, asking questions, avoiding assumptions, encouraging diagnostic coproduction, upholding high care standards and ethics, involving SGM individuals in healthcare improvement and increasing research on SGM health. CONCLUSIONS: Anti-SGM bias, queerphobia, lack of provider training and heteronormative attitudes hinder diagnostic decision-making and communication. As a result, SGM patients report significant harms. Solutions to mitigate diagnostic disparities require an intersectional approach that considers patients' gender identity, sexual orientation, race, age, economic status and system-level changes.

Patient and care partner assessments of diagnostic excellence in the emergency department: A cognitive interview study.

Background: Diagnostic excellence encompasses both receiving an accurate and timely explanation of a health problem that was communicated well, and the process it took to get to the correct diagnosis. Directly eliciting patients' perceptions of their diagnostic experience and outcomes after emergency visits is a promising method of assessing diagnostic excellence. However, little is known about how patients interpret and respond to questions about their diagnostic experiences and outcomes. Objective: To analyze patient and care partners' interpretation of questions capturing patient-reported diagnostic excellence in emergency settings. Design: Cognitive interviews using think-aloud and probing methods. Settings: Interviews were conducted virtually and via phone calls. Participants were patients or care partners of patients recently discharged from three emergency departments within a single academic health system in the Mid-Atlantic region of the US. Participants: 15 patients and care partners, 18 years or older, with recent emergency department experiences. Methods: Qualitative analysis using a deductive approach was used to code transcripts and analyze participant responses to Patient-Report to Improve Diagnostic Excellence in Emergency Department (PRIME-ED) questionnaire items. Themes of patient and care partners' questionnaire interpretations are presented descriptively. Results: 80% of participants were female, 47% were between the ages of 18-24 years, 47% of participants were White, and 7% were Hispanic/Latino. Participants shared their interpretations of diagnostic excellence following PRIME-ED domains: diagnostic accuracy and care team skills, their comprehension of the diagnosis, provider communication of uncertainty, and quality of diagnostic communication, including whether they felt the care team communicated well, adapted communication to their needs, listened and took concerns seriously, treated them as an equal, and provided clear, sufficient, and functional communication about follow-up steps. Responses indicated that patients and care partners can identify diagnostic errors, rationalize why their diagnosis was inaccurate, and assess whether diagnostic excellence was achieved. Respondents identified factors that contributed to their assessments of diagnostic accuracy and the quality of diagnostic communication. The quality of diagnostic communication contributed to patient perception of diagnostic accuracy and understanding of the diagnosis. Conclusions: Patient report is a useful tool for assessing diagnostic excellence in emergency settings. Our patient and care partners describe how they assess diagnostic excellence in the emergency department.Registration: N/A.Tweetable abstract: Patients and care partners provide accessible and useful information to assess diagnostic practices and diagnostic excellence in emergency departments.

Human centered design workshops as a meta-solution to diagnostic disparities.

OBJECTIVES: Diagnostic errors - inaccurate or untimely diagnoses or failures to communicate diagnoses - are harmful and costly for patients and health systems. Diagnostic disparities occur when diagnostic errors are experienced at disproportionate rates by certain patient subgroups based, for example, on patients' age, sex/gender, or race/ethnicity. We aimed to develop and test the feasibility of a human centered design workshop series that engages diverse stakeholders to develop solutions for mitigating diagnostic disparities. METHODS: We employed a series of human centered design workshops supplemented by semi-structured interviews and literature evidence scans. Co-creation sessions and rapid prototyping by patient, clinician, and researcher stakeholders were used to generate design challenges, solution concepts, and prototypes. RESULTS: A series of four workshops attended by 25 unique participants was convened in 2019-2021. Workshops generated eight design challenges, envisioned 29 solutions, and formulated principles for developing solutions in an equitable, patient-centered manner. Workshops further resulted in the conceptualization of 37 solutions for addressing diagnostic disparities and prototypes for two of the solutions. Participants agreed that the workshop processes were replicable and could be implemented in other settings to allow stakeholders to generate context-specific solutions. CONCLUSIONS: The incorporation of human centered design through a series of workshops promises to be a productive way of engaging patient-researcher stakeholders to mitigate and prevent further exacerbation of diagnostic disparities. Healthcare stakeholders can apply human centered design principles to guide thinking about improving diagnostic performance and to center diverse patients' needs and experiences when implementing quality and safety improvements.

Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity.

Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.

Telemedicine in Primary Care: Qualitative Work Towards a Framework for Appropriate Use.

INTRODUCTION: Telemedicine has been implemented in many health systems by necessity, yet evidence is sparse about its appropriate use for the delivery of primary care. We sought to understand what clinicians and patients consider to be appropriate use of telemedicine in primary care to inform future development of a framework that should be valuable to diverse stakeholders. METHODS: We conducted in-depth, structured interviews of patients, clinicians who deliver primary care, and other select informants. They were asked to discuss optimal, acceptable, and suboptimal uses of telemedicine for delivering care relative to in-person care delivery. Audio was transcribed and paired reviewers analyzed the content to identify the key concepts that motivated the informants. The reviewers did thematic analysis to organize the concepts into unifying themes. RESULTS: Our 18 key informants generated 103 unique concepts. The unique concepts aggregated into themes suggesting the clinical situations in which telemedicine is appropriately used in primary care and clinical situations in which it should be avoided. We also learned of motivators toward expanded, or at least continued, use of telemedicine and motivators away from telemedicine's continued use. The informants expressed their expectations regarding decision making about telemedicine use and who should make these decisions. DISCUSSION: These key concepts and themes are expected to be a valuable starting point for the development of a framework to inform appropriate use of telemedicine in primary care.

Working Framework for Appropriate Use of Virtual Care in Primary Care.

BACKGROUND: Given the absence of guidelines for use of virtual visits for primary care delivery, a framework is needed to inform the most appropriate use of virtual visits. METHODS: We conducted in-depth, structured interviews of 18 patients, primary care clinicians, and other select informants. They were asked to discuss optimal, acceptable, and suboptimal uses of telemedicine for delivering care relative to in-person care delivery. The concepts expressed informed our development of a framework about appropriate use of virtual visits. RESULTS: The 103 concepts supported 5 main themes that emerged as a framework: clinical situations which are optimal for in-person care; situations optimal for virtual visits; situations that might be exchangeable between sites; contextual factors favoring in-person care; and contextual factors favoring virtual visits. CONCLUSIONS: After further validation, we expect that this framework may guide future research and practice: it may be valuable for clinical practice redesign, for designing evaluations of the outcomes of virtual visits, for outcomes research, for patient education, for triage, and possibly for reimbursement considerations.

Challenges and Strategies for Patient Safety in Primary Care: A Qualitative Study.

Although most health care occurs in the ambulatory setting, limited research examines how providers and patients think about and enact ambulatory patient safety. This multimethod qualitative study seeks to identify perceived challenges and strategies to improve ambulatory safety from the perspectives of clinicians, staff, and patients. Data included interviews (N = 101), focus groups (N = 65), and observations of safety processes (N = 79) collected from 10 patient-centered medical homes. Key safety issues included the lack of interoperability among health information systems, clinician-patient communication failures, and challenges with medication reconciliation. Commonly cited safety strategies leveraged health information systems or involved dedicated resources (eg, providing access to social workers). Patients also identified strategies not mentioned by clinicians, emphasizing the need for their involvement in developing safety solutions. This work provides insight into safety issues of greatest concern to clinicians, staff, and patients and strategies to improve safety in the ambulatory setting.

Hormone Therapy, Mental Health, and Quality of Life Among Transgender People: A Systematic Review.

We sought to systematically review the effect of gender-affirming hormone therapy on psychological outcomes among transgender people. We searched PubMed, Embase, and PsycINFO through June 10, 2020 for studies evaluating quality of life (QOL), depression, anxiety, and death by suicide in the context of gender-affirming hormone therapy among transgender people of any age. We excluded case studies and studies reporting on less than 3 months of follow-up. We included 20 studies reported in 22 publications. Fifteen were trials or prospective cohorts, one was a retrospective cohort, and 4 were cross-sectional. Seven assessed QOL, 12 assessed depression, 8 assessed anxiety, and 1 assessed death by suicide. Three studies included trans-feminine people only; 7 included trans-masculine people only, and 10 included both. Three studies focused on adolescents. Hormone therapy was associated with increased QOL, decreased depression, and decreased anxiety. Associations were similar across gender identity and age. Certainty in this conclusion is limited by high risk of bias in study designs, small sample sizes, and confounding with other interventions. We could not draw any conclusions about death by suicide. Future studies should investigate the psychological benefits of hormone therapy among larger and more diverse groups of transgender people using study designs that more effectively isolate the effects of hormone treatment.

RISE: Exploring Volunteer Retention and Sustainability of a Second Victim Support Program.

EXECUTIVE SUMMARY: The Resilience In Stressful Events (RISE) program that supports healthcare professionals traumatized by stressful clinical events has had a stable, volunteer-based membership since its inception in 2011 at Johns Hopkins Hospital. For this study, we explored RISE members' perceptions of the program that contribute to their retention and the program's sustainability. We distributed a survey with quantitative and qualitative elements to assess perceptions in seven domains of interest. The response rate was 100%. Pearson chi-squared tests established statistical associations among quantitative variables. Qualitative data were explored using content analysis. Of 27 respondents, 19 had been members for 3 or more years. The training completion percentage was 100%, and the annual turnover percentage was 12%. Members found their duties to be meaningful (100%), personally satisfying (96%), and positively impactful (93%). A total of 89% reported confidence in their competency to perform RISE duties, 84% in their autonomy, and 56% in their personal resilience; 28% reported some burnout from RISE duties. Cronbach's α for these domain scores ranged from 0.65 to 0.97. Content analysis also revealed positive perceptions of RISE volunteering and personal empowerment. Members indicated a personal affinity with RISE and gains in energy and enjoyment from their membership. Contributing factors to volunteer retention may include members' perceptions that RISE builds valued skills and supports their affinity for others.

Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative Comment on "The Rise of the Consucrat".

Patient, public, consumer, and community (P2C2) engagement in healthcare delivery, research, and policy-making has been long considered an ethical obligation and is increasingly a regulatory requirement globally. The requirement to include a P2C2 member on various governing bodies may have inadvertently created what Evelyne de Leeuw calls the "consucrat" - a career consumer who has been designated and professionalized to function on behalf of a particular group or community. The concept of a consucrat can be problematic when a P2C2 member is co-opted by an institution governing body or in situations where institutions only seek and listen to the same voice over time. In this commentary, we suggest that one way to avoid these problems is to take seriously the concept and process of representation. Representation is only meaningful when P2C2 members are actively connected with those whom they represent. Doing so helps ensure P2C2 members remain grounded in the real-world concerns of their constituency and that representatives, backed by the voices of others, will be more powerful in effecting change.

Selecting Patient-Reported Outcome Measures to Contribute to Primary Care Performance Measurement: a Mixed Methods Approach.

New models of primary care include patient-reported outcome measures (PROMs) to promote patient-centered care. PROMs provide information on patient functional status and well-being, can be used to enhance care quality, and are proposed for use in assessing performance. Our objective was to identify a short list of candidate PROMs for use in primary care practice and to serve as a basis for performance measures (PMs). We used qualitative and quantitative methods to identify relevant patient-reported outcome (PRO) domains for use in performance measurement (PRO-PM) and their associated PROMs. We collected data from key informant groups: patients (n = 13; one-on-one and group interviews; concept saturation analysis), clinical thought leaders (n = 9; group discussions; thematic analysis), primary care practices representatives (n = 37; six focus groups; thematic analysis), and primary care payer representatives (n = 10; 12-question survey; frequencies of responses). We merged the key informant group information with findings from environmental literature scans. We conducted a targeted evidence review of measurement properties for candidate PROMs. We used a scoping review and key informant groups to identify PROM evaluation criteria, which were linked to the National Quality Forum measure evaluation criteria. We developed a de novo schema to score candidate PROMs against our criteria. We identified four PRO domains and 10 candidate PROMs: 3 for depressive symptoms, 2 for physical function, 3 for self-efficacy, 2 for ability to participate. Five PROMs met ≥ 70% of the evidence criteria for three PRO domains: PHQ-9 or PROMIS Depression (depression), PF-10 or PROMIS-PF (physical functioning), and PROMIS Self-Efficacy for Managing Treatments and Medications (self-efficacy). The PROMIS Ability to Participate in Social Roles and Activities met 68% of our criteria and might be considered for inclusion. Existing evidence and key informant data identified 5 candidate PROMs to use in primary care. These instruments can be used to develop PRO-PMs.

Measuring Stigma to Assess the Social Justice Implications of Health-Related Policy Decisions: Application to Novel Treatment Regimens for Multidrug-Resistant Tuberculosis.

In making policy decisions with constrained resources, an important consideration is the impact of alternative policy options on social justice. Social justice considers interactions between individuals and society and can be conceptualized across domains of agency, association, and respect. Despite its importance, social justice is rarely considered formally in health policy decision making, partially reflecting challenges in its measurement. We define three criteria for considering social justice in health-related policy decisions: 1) linkage of social justice to a measurable construct; 2) ability to reproducibly and feasibly estimate the impacts of a policy decision on the selected construct; and 3) appropriate presentation to decision makers of the expected social justice implications using that construct. We use preliminary data from qualitative interviews from three groups of respondents in South Africa and Uganda to demonstrate that stigma meets the first of these criteria. We then use the example of policy addressing novel treatment regimens for multidrug-resistant tuberculosis and a validated tuberculosis stigma scale to illustrate how policy effects on stigma could be estimated (criterion 2) and presented to decision makers in the form of justice-enhanced cost-effectiveness analysis (criterion 3). Finally, we provide a point-by-point guide for conducting similar assessments to facilitate consideration of social justice in health-related policy decisions. Our case study and guide for how to make social justice impacts more apparent to decision makers also illustrates the importance of local data and local capacity. Performing social justice assessments alongside more traditional evaluations of cost-effectiveness, budget impact, and burden of disease could help represent data-informed considerations of social justice in health care decision making more broadly.

Effects of antiandrogens on prolactin levels among transgender women on estrogen therapy: A systematic review.

BACKGROUND: Gender-affirming hormone therapy for transgender women includes estrogen and antiandrogens (cyproterone acetate, spironolactone, or gonadotropin-releasing hormone agonists). Both estrogen and antiandrogens are reported to increase prolactin levels. The objective is to systematically review the evidence of the effects of antiandrogens on prolactin levels, hyperprolactinemia, and prolactinomas among transgender women on estrogen therapy. METHODS: We searched PubMed, Embase, and PsycInfo up to May 2020. We included studies with at least 3 months follow-up that evaluated the effects of antiandrogens among transgender women and reported on prolactin levels, hyperprolactinemia, or image-confirmed prolactinomas. Two reviewers independently screened studies for eligibility, serially abstracted data, and independently assessed risk of bias and graded strength of evidence. FINDINGS: We included 17 studies (16 publications): 8 prospective cohorts, 8 retrospective cohorts, and 1 cross-sectional study, each with a moderate to serious risk of bias. Among transgender women on estrogen, prolactin levels increased by over 100% with cyproterone acetate and by up to 45% with spironolactone. However, we were unable to isolate the effects of antiandrogens from estrogen therapy. We were unable to draw conclusions about effects of antiandrogens on hyperprolactinemia and prolactinomas. INTERPRETATION: Prolactin levels may be increased in transgender women who are taking both estrogens and an antiandrogen. Future research is needed to determine the effects of different antiandrogens on prolactin levels separately from estrogen therapy. Ideally, future studies would be prospective, provide either a comparison of two different antiandrogens or compare combination of estrogen and antiandrogen therapy to estrogen alone, and control for possible confounders.

Who represents me? A patient-derived model of patient engagement via patient and family advisory councils (PFACs).

BACKGROUND: Despite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems). OBJECTIVE: To obtain rich insights about what patients who are not PFAC members expect of PFACs. DESIGN: From July to September 2018, we conducted a qualitative study using focus groups. SETTING AND PARTICIPANTS: We recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council. APPROACH: Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. RESULTS: Forty-two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio-economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives' diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems. CONCLUSIONS: Eliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs' activities. Attention should be given to improving and measuring patients' awareness of, and interactions with, their patient representatives.