Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

BACKGROUND: Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap. OBJECTIVE: We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences. METHODS: We conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey. RESULTS: After deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences. CONCLUSIONS: Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

BACKGROUND: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. OBJECTIVE: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. METHODS: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. RESULTS: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. CONCLUSIONS: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.

A Community-Academic Approach to Preventing Substance Use Disorders.

BACKGROUND: The coronavirus disease 2019 pandemic and activism against structural racism heightened awareness of racial-ethnic disparities and disproportionate burden among the underserved. The opioid crisis further compounds these phenomena, increasing vulnerability for substance use disorders (SUD). Community-based participatory research can facilitate multidisciplinary collaboration, yet literature on these approaches to prevent and reduce SUD and associated stigma remains limited. OBJECTIVE: Discrimination, stigma, and multiple crises with health care and systemic barriers increasingly marginalize the underserved, specifically around SUD. The Detroit Area Mental Health Leadership Team (DAMHLT, since 2015), aims to optimize SUD prevention, enhance resiliency and advocacy to advance knowledge on SUD research and influence community-level research and practice. LESSONS LEARNED: DAMHLT's approach on bidirectionality, community level access to real-time epidemiological data, advocacy (i.e., institutional responsiveness) and dissemination may be translational to other partnerships. CONCLUSIONS: As we move through an ever-changing pandemic, DAMHLT's lessons learned can inform partnership dynamics and public health strategies such as hesitancy on public health response.

A conceptual framework for clinical and translational virtual community engagement research.

Introduction: The COVID-19 pandemic accelerated a trend for clinical and translational community-engaged research in adapting to an increasingly virtual landscape. This requires a framework for engagement distinct from in-person research and program activities. We reflect on four case studies of community engagement activities that inform a conceptual framework to better integrate the virtual format into community-engaged research reflecting key tenets of health equity and antiracist praxis. Methods: Four projects were selected by community-engaged research stakeholders for an in-depth review based on how much the virtual transition impacted activities such as planning, recruitment, and data collection for each project. Transitions to virtual engagement were assessed across ten areas in which community engagement has been demonstrated to make a positive impact. Results: Our analysis suggests a conceptual evaluation framework in which the ten community engagement areas cluster into four interrelated domains: (1) development, design, and delivery; (2) partnership and trust building; (3) implementation and change; and (4) ethics and equity. Conclusions: The domains in this conceptual framework describe critical elements of community engaged research and programs consistent with recommendations for health equity informed meaningful community engagement from the National Academy of Medicine. The conceptual framework and case studies can be used for evaluation and to develop guidelines for clinical and translational researchers utilizing the virtual format in community-engaged research.

How Would Low-Income Communities Prioritize Medicaid Spending?

CONTEXT: Medicaid plays a critical role in low-income, minority, and medically underserved communities, particularly in states that have expanded Medicaid under the Affordable Care Act. Yet, the voices of underresourced communities are often unheard in decisions about how to allocate Medicaid's scarce resources, and traditional methods of public engagement are poorly suited to gathering such input. We argue that deliberative public engagement can be a useful tool for involving communities in setting Medicaid priorities. METHOD: We engaged 209 residents of low-income, medically underserved Michigan communities in discussions about Medicaid spending priorities using an exercise in informed deliberation: CHAT (CHoosing All Together). Participants learned about Medicaid, deliberated in small groups, and set priorities both individually and collectively. FINDINGS: Participants prioritized broad eligibility consistent with the ACA expansion, accepted some cost sharing, and prioritized spending in areas-including mental health-that are historically underfunded. Participants allocated less funding beyond benefit coverage, such as spending on healthy communities. Participants perceived the deliberative process as fair and informative, and they supported using it in the policy-making process. CONCLUSION: The choices of participants from low-income, medically underserved communities reflect a unique set of priorities and suggest that engaging low-income communities more deeply in Medicaid policy making might result in different prioritization decisions.

Community advisory boards: Experiences and common practices of clinical and translational science award programs.

Community advisory boards (CABs) are a valuable strategy for engaging and partnering with communities in research. Eighty-nine percent of Clinical and Translational Science Awardees (CTSA) responding to a 2011 survey reported having a CAB. CTSAs' experiences with CABs are valuable for informing future practice. This study was conducted to describe common CAB implementation practices among CTSAs; document perceived benefits, challenges, and contributions; and examine their progress toward desirable outcomes. A cross-CTSA collaborative team collected survey data from respondents representing academic and/or community members affiliated with CTSAs with CABs. Data representing 44 CTSAs with CABs were analyzed using descriptive statistics. A majority of respondents reported practices reflecting respect for CAB members' expertise and input such as compensation (75%), advisory purview beyond their CTSA's Community Engagement program (88%), and influence over CAB operations. Three-quarters provide members with orientation and training on roles and responsibilities and 89% reported evaluating their CAB. Almost all respondents indicated their CTSA incorporates the feedback of their CABs to some degree; over half do so a lot or completely. This study profiles practices that inform CTSAs implementing a CAB and provide an evaluative benchmark for those with existing CABs.

The effect of second hand smoke in patients with squamous cell carcinoma of the head and neck.

BACKGROUND: Active tobacco smoking is a well-known risk factor for head and neck malignancy, and strong evidence has associated tobacco as the main carcinogenic factor in squamous cell cancers of this region. Evidence supporting a carcinogenic effect of second-hand smoke (SHS) on head and neck organs in non-smokers was also demonstrated with results consistent with those for active smokers. There is little data on the effects of SHS in patients previously treated for squamous cell carcinomas of the head and neck. OBJECTIVE: The purpose of this study was to prospectively evaluate the role of SHS on recurrence and survival in treated head and neck cancer patients. METHODS: We conducted a prospective cohort study to examine the association between self-reported SHS exposure and the risk of recurrence and mortality in patients treated for squamous cell cancers of the head and neck in a longitudinal fashion. Patients filled out an exhaustive smoking questionnaire on presentation and abbreviated questionnaires at each follow-up visit, which occurred every 6 months. Primary outcome measures were recurrence, development of a second primary malignancy, and recurrence-free survival. Chi square analysis was used to assess the association between SHS and the primary outcomes. A multivariate binary logistic regression analysis was applied to determine the independent predictors of recurrence. Cox proportional hazards and Kaplan Meier modeling were employed to assess the possible relationships between SHS exposure and time to develop the primary outcomes. RESULTS: Untreated new patients with a histologically confirmed diagnosis of first primary SCC of the UADT (defined as cancer of the oral cavity, the oropharynx, the hypopharynx, and the larynx) were recruited. Patients seen at The University of Texas Medical Branch (UTMB) Head and Neck oncology clinic from 1988 to 1996 were considered as cases in this study. One hundred and thirty-five patients were enrolled in the study. The median follow-up time for the sample was 54 months (3.92 years). Complete records were achieved for 92% of patients, thus 124 patients were included in the final analysis. SHS significantly correlated with recurrence and recurrence-free survival. The rate of recurrence was 46% in the group exposed to SHS and 22% in the non-exposed group. Based on multivariate binary logistic regression analysis, SHS exposure was detected as a significant independent predictor for recurrence (HR = 3.00 [95% CI 1.18-7.63]). Kaplan-Meier analysis demonstrated that patients who were not exposed to SHS had a statistically significant longer recurrence-free survival (log-rank P = 0.029). The mean survival for non SHS-exposed patients was 76 [63-89] months versus 54 [45-63] months for those exposed to SHS. CONCLUSIONS: SHS exposure is an independent predictor of recurrence and survival after head and neck cancer treatment. These results support the importance and efforts of reducing smoking at home in in the work-place.

Community Experiences and Perceptions of Clinical and Translational Research and Researchers.

BACKGROUND: Engaging communities in research is increasingly recognized as critical to translation of research into improved health outcomes. Our objective was to understand community stakeholders' perspectives on researchers, academic institutions, and how community is valued in research. METHODS: A 45-item survey assessing experiences and perceptions of research (trust, community value, equity, researcher preparedness, and indicators of successful engagement) was distributed to 226 community members involved in health research with academic institutions. RESULTS: Of the 109 respondents, 60% were racial/ethnic minorities and 78% were women, representing a range of community organizations, faith-based organizations, and public health agencies. Most (57%) reported current involvement with a Clinical and Translational Science Award (CTSA). Only 25% viewed researchers as well-prepared to engage communities and few (13%) reported that resources were available and adequate to support community involvement. Most community stakeholders (66%) were compensated for their involvement in research, but only 40% perceived compensation to be appropriate. Trust of research and perceptions that researchers value community were more positive among those who perceived their compensation as appropriate (P = .001). CONCLUSIONS: Appropriate compensation and resources to support community involvement in research may improve perceptions of trust and value in academic-community partnerships. Strategies are needed to increase researcher preparedness to engage with communities.

Members of Minority and Underserved Communities Set Priorities for Health Research.

Policy Points Engaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level. Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research. CONTEXT: A major contributor to health disparities is the relative lack of resources-including resources for science-allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. METHODS: Academic-community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. FINDINGS: The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p = .005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p < .001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. CONCLUSIONS: Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.

Defining and Measuring Community Engagement and Community-Engaged Research: Clinical and Translational Science Institutional Practices.

BACKGROUND: The institutions that comprise the Clinical and Translational Science Award (CTSA) consortium and the National Center for Advancing Translational Sciences continue to explore and develop community-engaged research strategies and to study the role of community academic partnerships in advancing the science of community engagement. OBJECTIVES: To explore CTSA institutions in relation to an Institute of Medicine recommendation that community engagement occur in all stages of translational research and be defined and evaluated consistently. METHODS: A sequential multimethods study starting with an online pilot survey followed by survey respondents and site informant interviews. A revised survey was sent to the community engagement and evaluation leads at each CTSA institution, requesting a single institutional response about the definitions, indicators, and metrics of community engagement and community-engaged research. RESULTS: A plurality of CTSA institutions selected the definition of community engagement from the Principles of Community Engagement. Although claiming unique institutional priorities create barriers to developing shared metrics, responses indicate an overall lack of attention to the development and deployment of metrics to assess community engagement in and contributions to research. CONCLUSIONS: Although definitions of community engagement differ among CTSAs, there seem to be more similarities than differences in the indicators and measures tracked and reported on across all definitions, perhaps owing to commonalities among program infrastructures and goals. Metrics will likely need to be specific to translational research stages. The assessment of community engagement within translational science will require increased institutional commitment.

Validation of the Persistent Complex Bereavement Disorder (PCBD) Checklist: A Developmentally Informed Assessment Tool for Bereaved Youth.

The inclusion of Persistent Complex Bereavement Disorder (PCBD) in the DSM-5 appendix signifies a call for research regarding the distinguishing features and clinical utility of proposed PCBD criteria. Rigorously constructed tools for assessing PCBD are lacking, especially for youth. This study evaluated the validity and clinical utility of the PCBD Checklist, a 39-item measure designed to assess PCBD criteria in youth aged 8 to18 years. Test construction procedures involved: (a) reviewing the literature regarding developmental manifestations of proposed criteria, (b) creating a developmentally informed item pool, (c) surveying an expert panel to evaluate the clarity and developmental appropriateness of candidate items, (d) conducting focus groups to evaluate the comprehensibility and acceptability of items, and (e) evaluating psychometric properties in 367 bereaved youth (Mage = 13.49, 55.0% female). The panel, clinicians, and youth provided favorable content validity and comprehensibility ratings for candidate items. As hypothesized, youth who met full PCBD criteria, Criterion B (e.g., preoccupation with the deceased and/or circumstances of the death), or Criterion C (e.g., reactive distress and/or social/identity disruption) reported higher posttraumatic stress and depressive symptoms than youth who did not meet these criteria, ηp2 = .07-.16. Youth who met Criterion C reported greater functional impairment than youth who did not, ηp2 = .08-.12. Youth who qualified for the "traumatic bereavement specifier" reported more frequent posttraumatic stress symptoms than youth who did not, ηp2 = .04. Findings support the convergent, discriminant, and discriminant-groups validity, developmental appropriateness, and clinical utility of the PCBD Checklist.

A Retrospective on the Vision for Progress in Community Health Partnerships: Research, Education, and Action.

The organizers founded Progress in Community Health Partnerships with a commitment to improving our understanding of community-based participatory research (CBPR) and its use in community-academic/institutional health partnerships. Following Rogers's Diffusion of Innovations, they reasoned that expanded adoption would occur through academic and community partner recognition of CBPR's relative advantage over previous approaches; its compatibility with the values, past experience and needs of potential adopters; its ease of understanding and use; its capacity for experimentation and refinement; and its production of observable results. We now assess the journal's progress toward realizing the vision, as well as issues and problems the organizers identified. We map the journal's content over its first decade onto the initial vision by examining the record of submissions and publications across the eight types of articles and the journal's record of rejections and publications. In remembering that Rogers's study of innovations requires both technical and social change, we discuss the difference between understanding how to do something and actually putting an innovation into action that becomes standard practice at both individual and systemic levels. We observe that the large number of Original Research and Works-in-Progress/Lessons Learned manuscripts, submitted and published, reflect traditional expectations for faculty research productivity. We suggest that sustainability, which rated of lower importance within the initial vision, has gained in importance among community and academic partners; however, it will gain added attention only with changed university expectations of researchers. We further suggest that the study of partnerships involved in researching and improving public health should be expanded beyond the current focus on CBPR.

US antibiotic stewardship and penicillin allergy.

PURPOSE OF REVIEW: The purpose of this review is to improve otolaryngologists' antibiotic stewardship by detailing current approaches to penicillin allergy. RECENT FINDINGS: Although up to 15% of hospitalized patients in the United States have a penicillin allergy recorded on their charts, fewer than 10% of these have a true penicillin allergy. SUMMARY: Using a combination of a detailed allergy history, skin testing and graded-dose administration, many patients whose charts say 'penicillin-allergic' can safely be treated with penicillin and cross-reacting antibiotics. This permits use of narrower-spectrum antibiotics and saves money.

Personality and Perpetration: Narcissism Among College Sexual Assault Perpetrators.

Theory and research suggest that narcissism plays an important role in perpetration of sexual aggression. As narcissism is a multidimensional construct, our objective was to clarify the relation between perpetration and three aspects of narcissism. College men (N = 234) completed the Narcissistic Personality Inventory (NPI), Narcissistic Personality Disorder (NPD) subscale of the Structured Clinical Interview for DSM Disorders-II (SCID-N) Personality Questionnaire, and Hypersensitive Narcissism Scale (HSNS). Perpetrators had higher scores on NPD traits, which were also associated with frequent perpetration. HSNS scores were only associated with perpetration via alcohol and/or drugs. Only the maladaptive facets of NPI narcissism correlated with perpetration. Narcissism seems to have been understudied in nonincarcerated perpetrators.

The State as Community in Community-Based Participatory Research.

BACKGROUND: Community-based participatory research (CBPR) typically defines communities by geography, ethnicity, shared health needs, or some combination. OBJECTIVES: We describe a CBPR project aiming to engage diverse minority and underserved communities throughout Michigan in deliberations about health research priorities. METHODS: A steering committee (SC) with 15 members from minority and underserved communities and 4 members from research organizations led the project, with the help of regional advisory groups (RAGs) formed at the SC's request. Evaluation of the SC used questionnaires, focused group discussion, and review of SC meetings to describe engagement, partnership, and communication. LESSONS LEARNED: An academic-community partnership with a diverse, dispersed, and broadly defined community found value in RAGs, dedicated academic staff, face-to-face meetings, varied communication modalities, capacity building tailored to varying levels of CBPR experience, and ongoing evaluation. CONCLUSIONS: A geographically and culturally diverse partnership presents challenges and opportunities in representativeness, relationship building, capacity building, and communication.

Asthma treatments: new and emerging therapies.

BACKGROUND: As part of this primer, this article is intended to introduce new and emerging therapies for treating asthma. METHODS: A PubMed search was performed for the years 2013 through 2015 for asthma review, asthma treatment, asthma therapy, and asthma new. Subset searches were additionally performed as suggested by information contained in the first round of searches. RESULTS: There is continuing work toward the identification of additional cellular and molecular mechanisms of asthma. Many of these suggest additional targets for therapy. New pharmaceuticals, biologics, and procedures are reviewed in greater depth. CONCLUSION: This is a summary of new and emerging asthma therapies.

Qualitative Research and Community-Based Participatory Research: Considerations for Effective Dissemination in the Peer-Reviewed Literature.

BACKGROUND: Qualitative research is appearing with increasing frequency in the public health and medical literature. Qualitative research in combination with a community-based participatory research (CBPR) approach can be powerful. However little guidance is available on how to present qualitative research within a CBPR framework for peer-review publications. OBJECTIVES: This article provides a brief overview of how qualitative research can advance CBPR partnerships and outlines practical guidelines for writing for publication about qualitative research within a CBPR framework to (1) guide partners with little experience publishing in peer-reviewed journals and/or (2) facilitate effective preparation of manuscripts grounded in qualitative research for peer-reviewed journals. We provide information regarding the specific benefits of qualitative inquiry in CBPR, tips for organizing the manuscript, questions to consider in preparing the manuscript, common mistakes in the presentation of qualitative research, and examples of peer-reviewed manuscripts presenting qualitative research conducted within a CBPR framework. CONCLUSIONS: Qualitative research approaches have tremendous potential to integrate community and researcher perspectives to inform community health research findings. Effective dissemination of CBPR informed qualitative research findings is crucial to advancing health disparities research.

Allergy in the geriatric population.

PURPOSE OF REVIEW: Allergies and asthma have long been considered diseases of children and young adults. They are, however, prevalent among older patients also. This article summarizes findings on the diagnosis and treatment of allergies and asthma in the older population. RECENT FINDINGS: Allergies and asthma occur with fair frequency in older patients. Remembering to look and test for these problems enables better treatment and symptom control for these patients. Immunotherapy works well in this population. SUMMARY: Regardless of the patient's age, the differential diagnosis for sinonasal and dyspnea complaints should include allergies and asthma. Diagnosis is straightforward, and appropriate treatment improves quality of life.