Advancing maturity modeling for precision oncology.

Introduction: This study aimed to map the maturity of precision oncology as an example of a Learning Health System by understanding the current state of practice, tools and informatics, and barriers and facilitators of maturity. Methods: We conducted semi-structured interviews with 34 professionals (e.g., clinicians, pathologists, and program managers) involved in Molecular Tumor Boards (MTBs). Interviewees were recruited through outreach at 3 large academic medical centers (AMCs) (n = 16) and a Next Generation Sequencing (NGS) company (n = 18). Interviewees were asked about their roles and relationships with MTBs, processes and tools used, and institutional practices. The interviews were then coded and analyzed to understand the variation in maturity across the evolving field of precision oncology. Results: The findings provide insight into the present level of maturity in the precision oncology field, including the state of tooling and informatics within the same domain, the effects of the critical environment on overall maturity, and prospective approaches to enhance maturity of the field. We found that maturity is relatively low, but continuing to evolve, across these dimensions due to the resource-intensive and complex sociotechnical infrastructure required to advance maturity of the field and to fully close learning loops. Conclusion: Our findings advance the field by defining and contextualizing the current state of maturity and potential future strategies for advancing precision oncology, providing a framework to examine how learning health systems mature, and furthering the development of maturity models with new evidence.

A survey of computable biomedical knowledge repositories.

Introduction: While data repositories are well-established in clinical and research enterprises, knowledge repositories with shareable computable biomedical knowledge (CBK) are relatively new entities to the digital health ecosystem. Trustworthy knowledge repositories are necessary for learning health systems, but the policies, standards, and practices to promote trustworthy CBK artifacts and methods to share, and safely and effectively use them are not well studied. Methods: We conducted an online survey of 24 organizations in the United States known to be involved in the development or deployment of CBK. The aim of the survey was to assess the current policies and practices governing these repositories and to identify best practices. Descriptive statistics methods were applied to data from 13 responding organizations, to identify common practices and policies instantiating the TRUST principles of Transparency, Responsibility, User Focus, Sustainability, and Technology. Results: All 13 respondents indicated to different degrees adherence to policies that convey TRUST. Transparency is conveyed by having policies pertaining to provenance, credentialed contributors, and provision of metadata. Repositories provide knowledge in machine-readable formats, include implementation guidelines, and adhere to standards to convey Responsibility. Repositories report having Technology functions that enable end-users to verify, search, and filter for knowledge products. Less common TRUST practices are User Focused procedures that enable consumers to know about user licensing requirements or query the use of knowledge artifacts. Related to Sustainability, less than a majority post describe their sustainability plans. Few organizations publicly describe whether patients play any role in their decision-making. Conclusion: It is essential that knowledge repositories identify and apply a baseline set of criteria to lay a robust foundation for their trustworthiness leading to optimum uptake, and safe, reliable, and effective use to promote sharing of CBK. Identifying current practices suggests a set of desiderata for the CBK ecosystem in its continued evolution.

Learning about COVID-19: sources of information, public trust, and contact tracing during the pandemic.

OBJECTIVE: To assess the association between public attitudes, beliefs, and information seeking about the COVID-19 pandemic and willingness to participate in contact tracing in Michigan. METHODS: Using data from the quarterly Michigan State of the State survey conducted in May 2020 (n = 1000), we conducted multiple regression analyses to identify factors associated with willingness to participate in COVID-19 contact tracing efforts. RESULTS: Perceived threat of the pandemic to personal health (B = 0.59, p = <.00, Ref = No threat) and general trust in the health system (B = 0.17, p < 0.001), were the strongest positive predictors of willingness to participate in contact tracing. Concern about misinformation was also positively associated with willingness to participate in contact tracing (B = 0.30, p < 0.001; Ref = No concern). Trust in information from public health institutions was positively associated with willingness to participate in contact tracing, although these institutions were not necessarily the main sources of information about COVID-19. CONCLUSION: Policy makers can enhance willingness to participate in public health efforts such as contact tracing during infectious disease outbreaks by helping the public appreciate the seriousness of the public health threat and communicating trustworthy information through accessible channels.

What Does "Patient-Centered" Mean? Qualitative Perspectives from Older Adults and Family Caregivers.

This study aimed to (1) examine what patient-centeredness means for older adults and family caregivers, and (2) assess circumstances underlying their preference for geriatric care. We conducted separate focus groups with older adults and family caregivers of older adults about health care experiences and expectations and conducted a vignette-based experiment to assess preference for geriatric care. Participants expressed a need for greater skill and empathy and integration of caregivers. They preferred geriatric care to usual primary care with increasing social, health, and healthcare complexity. Distinct needs of older adults should be considered in referral practices to geriatric medicine.

"If It Needs to be Done, It Needs to be Done": National Survey of Youth Experiences and Perspectives on Caregiving.

PURPOSE: The purpose of this study was to explore youth experiences and perspectives on family caregiving to improve programs and policies that impact the well-being of youth. METHODS: In August 2020, we asked three open-ended questions about current and anticipated caregiving responsibilities, impact, and needs using MyVoice, a national text message poll of youth. Content and thematic analysis was conducted to evaluate qualitative responses. RESULTS: In our sample (n = 1,076), 35% of respondents reported previously or currently providing care for an adult relative either independently or by helping another relative. Participants believed caregiving had or would hinder their educational or career goals and that specific training would better prepare them to be a caregiver. CONCLUSIONS: The prevalence of youth caregiving may be higher than previous estimates. Healthcare professionals should evaluate youth for caregiving responsibilities and support them in identifying resources or interventions to reduce potential impacts of caregiving burden on health outcomes.

Exploring How Personal, Social, and Institutional Characteristics Contribute to Geriatric Medicine Subspecialty Decisions: A Qualitative Study of Trainees' Perceptions.

PURPOSE: To explore internal medicine residents' and geriatrics fellows' perceptions of how personal, social, and institutional characteristics contribute to their professional identity and subspecialty decisions related to geriatric medicine. METHOD: The authors conducted 23 in-depth, semistructured interviews with internal medicine residents, with and without an interest in geriatrics, and geriatrics fellows across 3 academic medical centers in the United States from October 2018 through June 2019. They then used a qualitative narrative approach to analyze the interview data. RESULTS: Trainees related personal experiences, such as exposure to physicians and experiences with grandparents, to their interest in medicine. Trainees with an interest in geriatrics at 2 institutions did not feel supported, or understood, by peers and mentors in their respective institutions but maintained their interest in the field. The following variations between institutions that are supportive and those that are not were noted: the number of geriatricians, the proximity of the institution to geriatrics clinics, and the ways in which institutional leaders portrayed the prestige of geriatric medicine. Institutional characteristics influenced trainees' understanding of what it meant to be a doctor, what meaning they garnered from work as a physician, and their comfort with different types of complexity, such as those presented when providing care to older adults. CONCLUSIONS: Institutional characteristics may be particularly important in shaping trainee interest in geriatric medicine. Institutions should encourage leadership training and opportunities for geriatricians so they can serve as role models and as hands-on mentors for trainees beginning in medical school. Increasing the number of geriatricians requires institutions to increase the value they place on geriatrics to generate a positive interest in this field among trainees. Institutions facilitating formation of professional identity and sense of purpose in work may consider engaging geriatricians in leadership and mentoring roles as well as curriculum development.

Dynamics of Physicians' Trust in Fellow Health Care Providers and the Role of Health Information Technology.

Physicians are expected and incentivized to coordinate patient care with other providers, including nonphysician clinician (NPC) members of care teams, requiring trust. Trust in the context of care teams has not been well-studied; even less is known about how health information technologies (HIT) may modify trust in these relationships. We conducted semistructured interviews with 30 physicians at a Midwestern academic center to examine how physicians determine they can trust NPCs, and how technology modifies these relationships. A majority of physicians base trust in NPCs on cognitive factors such as competence and reliability. Technology enhances trust between physicians and NPCs by supporting evidence-based decision making; it can also erode trust by limiting opportunities for developing familiarity and comfort with fellow providers. Our work has implications for enhancing HIT to promote trust between providers, and for developing more robust measures of trust that can be used in evaluating and improving teamwork within practices.

Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample.

BACKGROUND: With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one's health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation. METHODS: We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research. RESULTS: We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively). CONCLUSIONS: Belief that there is an ethical obligation to allow one's health information to be used for research is shaped by altruism and by one's experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one's health information.

Patient-Reported Experiences of Discrimination in the US Health Care System.

Importance: Although considerable evidence exists on the association between negative health outcomes and daily experiences of discrimination, less is known about such experiences in the health care system at the national level. It is critically necessary to measure and address discrimination in the health care system to mitigate harm to patients and as part of the larger ongoing project of responding to health inequities. Objectives: To (1) identify the national prevalence of patient-reported experiences of discrimination in the health care system, the frequency with which they occur, and the main types of discrimination experienced and (2) examine differences in the prevalence of discrimination across demographic groups. Design, Setting, and Participants: This cross-sectional national survey fielded online in May 2019 used a general population sample from the National Opinion Research Center's AmeriSpeak Panel. Surveys were sent to 3253 US adults aged 21 years or older, including oversamples of African American respondents, Hispanic respondents, and respondents with annual household incomes below 200% of the federal poverty level. Main Outcomes and Measures: Analyses drew on 3 survey items measuring patient-reported experiences of discrimination, the primary types of discrimination experienced, the frequency with which they occurred, and the demographic and health-related characteristics of the respondents. Weighted bivariable and multivariable logistic regressions were conducted to assess associations between experiences of discrimination and several demographic and health-related characteristics. Results: Of 2137 US adult respondents who completed the survey (66.3% response rate; unweighted 51.0% female; mean [SD] age, 49.6 [16.3] years), 458 (21.4%) reported that they had experienced discrimination in the health care system. After applying weights to generate population-level estimates, most of those who had experienced discrimination (330 [72.0%]) reported experiencing it more than once. Of 458 reporting experiences of discrimination, racial/ethnic discrimination was the most common type (79 [17.3%]), followed by discrimination based on educational or income level (59 [12.9%]), weight (53 [11.6%]), sex (52 [11.4%]), and age (44 [9.6%]). In multivariable analysis, the odds of experiencing discrimination were higher for respondents who identified as female (odds ratio [OR], 1.88; 95% CI, 1.50-2.36) and lower for older respondents (OR, 0.98; 95% CI, 0.98-0.99), respondents earning at least $50 000 in annual household income (OR, 0.76; 95% CI, 0.60-0.95), and those reporting good (OR, 0.59; 95% CI, 0.46-0.75) or excellent (OR, 0.41; 95% CI, 0.31-0.56) health compared with poor or fair health. Conclusions and Relevance: The results of this study suggest that experiences of discrimination in the health care system appear more common than previously recognized and deserve considerable attention. These findings contribute to understanding of the scale at which interpersonal discrimination occurs in the US health care system and provide crucial evidence for next steps in assessing the risks and consequences of such discrimination. The findings also point to a need for further analysis of how interpersonal discrimination interacts with structural inequities and social determinants of health to build effective responses.

Rethinking ethical oversight in the era of the learning health system.

Opportunities to advance science increasingly arise through investigations embedded within routine clinical practice in the form of learning health systems. Such activities challenge conventional approaches to research regulation that have not caught up with those opportunities, often imposing burdens generalized from riskier research. We analyze the rules and conventions in the US, demonstrating how even those rules are compatible with a much more flexible approach to participant risk, institutional oversight, participant consent, and disclosure for low-risk learning activities in all jurisdictions.

Building and maintaining trust in clinical decision support: Recommendations from the Patient-Centered CDS Learning Network.

Knowledge artifacts in digital repositories for clinical decision support (CDS) can promote the use of CDS in clinical practice. However, stakeholders will benefit from knowing which they can trust before adopting artifacts from knowledge repositories. We discuss our investigation into trust for knowledge artifacts and repositories by the Patient-Centered CDS Learning Network's Trust Framework Working Group (TFWG). The TFWG identified 12 actors (eg, vendors, clinicians, and policy makers) within a CDS ecosystem who each may play a meaningful role in prioritizing, authoring, implementing, or evaluating CDS and developed 33 recommendations distributed across nine "trust attributes." The trust attributes and recommendations represent a range of considerations such as the "Competency" of knowledge artifact engineers and the "Organizational Capacity" of institutions that develop and implement CDS. The TFWG findings highlight an initial effort to make trust explicit and embedded within CDS knowledge artifacts and repositories and thus more broadly accepted and used.

An Analysis of the Learning Health System in Its First Decade in Practice: Scoping Review.

BACKGROUND: In the past decade, Lynn Etheredge presented a vision for the Learning Health System (LHS) as an opportunity for increasing the value of health care via rapid learning from data and immediate translation to practice and policy. An LHS is defined in the literature as a system that seeks to continuously generate and apply evidence, innovation, quality, and value in health care. OBJECTIVE: This review aimed to examine themes in the literature and rhetoric on the LHS in the past decade to understand efforts to realize the LHS in practice and to identify gaps and opportunities to continue to take the LHS forward. METHODS: We conducted a thematic analysis in 2018 to analyze progress and opportunities over time as compared with the initial Knowledge Gaps and Uncertainties proposed in 2007. RESULTS: We found that the literature on the LHS has increased over the past decade, with most articles focused on theory and implementation; articles have been increasingly concerned with policy. CONCLUSIONS: There is a need for attention to understanding the ethical and social implications of the LHS and for exploring opportunities to ensure that these implications are salient in implementation, practice, and policy efforts.

Trust in provider care teams and health information technology-mediated communication.

Teams of healthcare providers use health information technology (HIT) to facilitate communication and collaboration. Effective team-based care requires trust, yet we know relatively little about how physicians build and maintain trust with their fellow providers and, further, how HIT affects trust among provider team members. We describe priority areas for advancing our understanding of trust within healthcare teams, which may inform policies and HIT design in efforts to improve clinical decision making, provider satisfaction, quality of care, and patient health outcomes.

Public Trust in Health Information Sharing: A Measure of System Trust.

OBJECTIVE: To measure public trust in a health information sharing in a broadly defined health system (system trust), inclusive of health care, public health, and research; to identify individual characteristics that predict system trust; and to consider these findings in the context of national health initiatives (e.g., learning health systems and precision medicine) that will expand the scope of data sharing. DATA SOURCES: Survey data (n = 1,011) were collected in February 2014. STUDY DESIGN: We constructed a composite index of four dimensions of system trust-competency, fidelity, integrity, and trustworthiness. The index was used in linear regression evaluating demographic and psychosocial predictors of system trust. DATA COLLECTION: Data were collected by GfK Custom using a nationally representative sample and analyzed in Stata 13.0. PRINCIPAL FINDINGS: Our findings suggest the public's trust may not meet the needs of health systems as they enter an era of expanded data sharing. We found that a majority of the U.S. public does not trust the organizations that have health information and share it (i.e., the health system) in one or more dimensions. Together, demographic and psychosocial factors accounted for ~18 percent of the observed variability in system trust. Future research should consider additional predictors of system trust such as knowledge, attitudes, and beliefs to inform policies and practices for health data sharing.

Measuring physicians' trust: A scoping review with implications for public policy.

Increasingly, physicians are expected to work in productive, trusting relationships with other health system stakeholders to improve patient and system outcomes. A better understanding of physicians' trust is greatly needed. This study assesses the state of the literature on physicians' trust in patients, other health care providers, institutions, and data systems or technology, and identifies key themes, dimensions of trust considered, quantitative measures used, and opportunities for further development via a scoping review. Peer-reviewed, English-language research articles were identified for inclusion in this study based on systematic searches of the Ovid/Medline, Pubmed, Proquest, Scopus, Elsevier, and Web of Science databases. Search terms included "trust" along with "physician," "doctor," "primary care provider," "family practitioner," "family practice," "generalist," "general practitioner," "general practice," "internist," "internal medicine," or "health professional," and plausible variants. Among the relevant articles identified (n = 446), the vast majority focused on patient trust in physicians (81.2%). Among articles examining physicians' trust, rigorous investigations of trust are rare, narrowly focused, and imprecise in their discussion of trust. Robust investigations of the effects of trust or distrust-as opposed to trust's determinants-and studies using validated quantitative trust measures are particularly rare. Studies typically measured trust using the language of confidence, effective communication, or cooperation, rarely or never capturing other important dimensions of trust, such as fidelity, the trustee's reputation, social capital, vulnerability, and acceptance. Research employing new, validated measures of physicians' trust, especially trust in institutions, may be highly informative to health system leaders and policymakers seeking to hone and enhance tools for improving the effectiveness and efficiency of the health care system.