Telehealth Experience Among Liver and Kidney Transplant Recipients: A Mixed Methods Study.

Telehealth has become widely available to solid organ transplant (SOT) recipients during the COVID-19 pandemic. While evidence suggests that telehealth serves as an acceptable alternative for most SOT recipients, their satisfaction and its context remain unclear. This study used a mixed methods approach to investigate the perspectives of SOT recipients (i.e., liver, kidney, and simultaneous liver-kidney) on the benefits and disadvantages of telehealth. A total of 252 adult SOT recipients completed an online survey that quantitatively assessed telehealth experience and satisfaction. Fifteen of them further shared their perspectives by participating in either a focus group or individual interview. Approximately 70% of online survey participants had previously used telehealth for their transplant care. The quantitative data documented that, while recipients were mostly satisfied with telehealth, especially with its effectiveness and convenience, they were less satisfied with the reliability of navigating the telehealth system. The qualitative data further showed that telehealth could be less effective for SOT recipients who perceived themselves as clinically and/or socially vulnerable, needed urgent care, and were concerned about privacy. These findings suggest that the plan for using telehealth to provide transplant care should prioritize personalization, considering unique needs and preferences of each SOT recipient.

Implementing Cancer Genomics in State Health Agencies: Mapping Activities to an Implementation Science Outcome Framework.

OBJECTIVE: To show how state health agencies can plan and evaluate activities to strengthen the evidence base for public health genomics, we mapped state cancer genomics activities to the Doyle et al. [Genet Med. 2018;20(9):995-1003] implementation science outcome framework. METHODS: We identified state health agency activities addressing hereditary breast and ovarian cancer and Lynch syndrome by reviewing project narratives from Centers for Disease Control and Prevention Cancer Genomics Program funding recipients, leading discussions with state health agencies, and conducting an environmental scan. RESULTS: State health agencies' cancer genomics activities included developing or adding to state surveillance systems, developing educational materials, bidirectional reporting, promoting health plan policy change, training providers, and promoting recommendations and standards. To address health disparities, programs have tracked group differences, developed culturally appropriate educational materials, and promoted access to services for underserved populations. CONCLUSION: State health agencies can use the Doyle et al. [Genet Med. 2018;20(9):995-1003] performance objectives and outcome measures to evaluate proposed and ongoing activities. By demonstrating whether activities result in improved outcomes, state health agencies can build the evidence for the implementation of cancer genomics activities.

Learning in Crisis: Training students to monitor and address irresponsible knowledge construction by U.S. federal agencies under Trump.

Immediately after President Trump's inauguration, U.S. federal science agencies began deleting information about climate change from their websites, triggering alarm among scientists, environmental activists, and journalists about the administration's attempt to suppress information about climate change and promulgate climate denialism. The Environmental Data & Governance Initiative (EDGI) was founded in late 2016 to build a multidisciplinary collaboration of scholars and volunteers who could monitor the Trump administration's dismantling of environmental regulations and science deemed harmful to its industrial and ideological interests. One of EDGI's main initiatives has been training activists and volunteers to monitor federal agency websites to identify how the climate-denialist ideology is affecting public debate and science policy. In this paper, we explain how EDGI's web-monitoring protocols are being incorporated into college curricula. Students are trained how to use the open-source online platforms that EDGI has created, but are also trained in how to analyze changes, determine whether they are significant, and contextualize them for a public audience. In this way, EDGI's work grows out of STS work on "critical making" and "making and doing." We propose that web-monitoring exemplifies an STS approach to responsive and responsible knowledge production that demands a more transparent and trustworthy relationship between the state and the public. EDGI's work shows how STS scholars can establish new modes of engagement with the state, and create spaces where the public can not only define and demand responsible knowledge practices, but also participate in the process of creating STS inspired forms of careful, collective and public knowledge construction.

Blending Insights from Implementation Science and the Social Sciences to Mitigate Inequities in Screening for Hereditary Cancer Syndromes.

Genomic screening to identify people at high risk for adult-onset hereditary conditions has potential to improve population health. However, if not equitably accessible, genomics-informed screening programs will exacerbate existing health inequities or give rise to new ones. To realize the disease prevention potential of these screening tools, we need strategies to broaden their reach. We propose a conceptual framework that merges insights from implementation science and sociological research on health inequities. Our framework does three things: first, it broadens the arenas of action beyond those typically addressed in implementation science frameworks; second, it argues for recruiting more diverse partners to share the work of implementation and dissemination; and third, it shows how implementation activities can be coordinated more effectively among those partners. We use screening for hereditary breast and ovarian cancers (HBOC) as a case to illustrate how this enhanced framework could guide implementation science and distribute the benefits of genomic medicine more equitably. Although our example is specific to genomics, this approach is more broadly applicable to the field of implementation science. Coordinated action among multiple stakeholders could translate a host of new technologies from the bench to the trench without creating new inequities or exacerbating existing ones.

Understanding the potential of state-based public health genomics programs to mitigate disparities in access to clinical genetic services.

PURPOSE: State health agencies (SHAs) have developed public health genomics (PHG) programs that play an instrumental role in advancing precision public health, but there is limited research on their approaches. This study examines how PHG programs attempt to mitigate or forestall health disparities and inequities in the utilization of genomic medicine. METHODS: We compared PHG programs in three states: Connecticut, Michigan, and Utah. We analyzed 85 in-depth interviews with SHA internal and external collaborators and program documents. We employed a qualitative coding process to capture themes relating to health disparities and inequities. RESULTS: Each SHA implemented population-level approaches to identify individuals who carry genetic variants that increase risk of hereditary cancers. However, each SHA developed a unique strategy-which we label public health action repertoires-to reach specific subgroups who faced barriers in accessing genetic services. These strategies varied across states given demographics of the state population, state-level partnerships, and availability of healthcare services. CONCLUSION: Our findings illustrate the imperative of tailoring PHG programs to local demographic characteristics and existing community resources. Furthermore, our study highlights how integrating genomics into precision public health will require multilevel, multisector collaboration to optimize efficacy and equity.

Navigating the evidentiary turn in public health: Sensemaking strategies to integrate genomics into state-level chronic disease prevention programs.

In the past decade, healthcare delivery has faced two major disruptions: the mapping of the human genome and the rise of evidence-based practice. Sociologists have documented the paradigmatic shift towards evidence-based practice in medicine, but have yet to examine its effect on other health professions or the broader healthcare arena. This article shows how evidence-based practice is transforming public health in the United States. We present an in-depth qualitative analysis of interview, ethnographic, and archival data to show how Michigan's state public health agency has navigated the turn to evidence-based practice, as they have integrated scientific advances in genomics into their chronic disease prevention programming. Drawing on organizational theory, we demonstrate how they managed ambiguity through a combination of sensegiving and sensemaking activities. Specifically, they linked novel developments in genomics to a long-accepted public health planning model, the Core Public Health Functions. This made cutting edge advances in genomics more familiar to their peers in the state health agency. They also marshaled state-specific surveillance data to illustrate the public health burden of hereditary cancers in Michigan, and to make expert panel recommendations for genetic screening more locally relevant. Finally, they mobilized expertise to help their internal colleagues and external partners modernize conventional public health activities in chronic disease prevention. Our findings show that tools and concepts from organizational sociology can help medical sociologists understand how evidence-based practice is shaping institutions and interprofessional relations in the healthcare arena.

Proposed outcomes measures for state public health genomic programs.

PURPOSE: To assess the implementation of evidence-based genomic medicine and its population-level impact on health outcomes and to promote public health genetics interventions, in 2015 the Roundtable on Genomics and Precision Health of the National Academies of Sciences, Engineering, and Medicine formed an action collaborative, the Genomics and Public Health Action Collaborative (GPHAC). This group engaged key stakeholders from public/population health agencies, along with experts in the fields of health disparities, health literacy, implementation science, medical genetics, and patient advocacy. METHODS: In this paper, we present the efforts to identify performance objectives and outcome metrics. Specific attention is placed on measures related to hereditary breast ovarian cancer (HBOC) syndrome and Lynch syndrome (LS), two conditions with existing evidence-based genomic applications that can have immediate impact on morbidity and mortality. RESULTS: Our assessment revealed few existing outcome measures. Therefore, using an implementation research framework, 38 outcome measures were crafted. CONCLUSION: Evidence-based public health requires outcome metrics, yet few exist for genomics. Therefore, we have proposed performance objectives that states might use and provided examples of a few state-level activities already under way, which are designed to collect outcome measures for HBOC and LS.

The Socio-Exposome: Advancing Exposure Science and Environmental Justice in a Post-Genomic Era.

We propose the socio-exposome as a conceptual framework for integrative environmental health research. Environmental scientists coined the term "exposome" with the goal of inventorying and quantifying environmental exposures as precisely as scientists measure genes and gene expression. To date, the exposome's proponents have not thoroughly engaged social scientific theoretical and methodological expertise, although the exclusion of sociological expertise risks molecularizing complex social phenomena and limiting the possibility of collective action to improve environmental conditions. As a corrective, and to demonstrate how "omic" technologies could be made more relevant to public health, our socio-exposome framework blends insights from sociological and public health research with insights from environmental justice scholarship and activism. We argue that environmental health science requires more comprehensive data on more and different kinds of environmental exposures, but also must consider the socio-political conditions and inequalities that allow hazards to continue unchecked. We propose a multidimensional framework oriented around three axes: individual, local, and global, and suggest some sociomarkers and data sources that could identify exposures at each level. This framework could also guide policy, by creating a predictive framework that helps communities understand the repercussions of corporate and regulatory practices for public health and social justice.

The strategic defense of physician autonomy: State public health agencies as countervailing powers.

Advances in genetic testing and the aggressive marketing of genetic tests by commercial diagnostic laboratories have driven both consumer demand and the need for unbiased information about how tests should guide healthcare delivery. This paper uses the countervailing powers framework to explore the role of state public health agencies as arbiters of quality and safety, specifically through their efforts to encourage physicians to follow evidence-based recommendations for screening for hereditary cancers. Social scientists have often viewed actions by the state to regulate cost, quality, or safety as a threat to physician autonomy. This paper draws on case studies from two US states-Michigan and Connecticut-to better understand the specific role of state public health agencies, and especially whether their activities to encourage adherence to evidence-based recommendations bolster or subvert the interests of other parties in the healthcare arena. We find that lacking authority to compel provider to follow evidence-based recommendations, they improvised ways to foster compliance voluntarily, for example, by emphasizing the role of the physician as gatekeeper, thus affirming the importance of physician autonomy and clinical judgment. Both states also used public health surveillance data to make rare diseases visible and illustrate gaps between recommendations and practice. Finally, they both showed that following evidence-based recommendations could align the professional and market interests of healthcare stakeholders. Both states employed similar strategies with similar effects, despite substantial differences in the regulatory climate and organizational capacity. Taken as a whole, their activities orchestrated a countervailing response that checked the profit-seeking motives of commercial laboratories. Our findings demonstrate that rather than eroding physician autonomy, state action to monitor healthcare quality and encourage adherence to evidence-based recommendations can actually reinforce physician authority.

Using Public-Private Partnerships to Mitigate Disparities in Access to Genetic Services: Lessons from Wisconsin.

PURPOSE: This mixed-methods study reports on an outreach clinics program designed to deliver genetic services to medically underserved communities in Wisconsin. METHODOLOGY: We show the geographic distribution, funding patterns, and utilization trends for outreach clinics over a 20-year period. Interviews with program planners and outreach clinic staff show how external and internal constraints limited the program's capacity. We compare clinic operations to the conceptual models guiding program design. FINDINGS: Our findings show that state health officials had to scale back financial support for outreach clinic activities while healthcare providers faced increasing pressure from administrators to reduce investments in charity care. These external and internal constraints led to a decline in the overall number of patients served. We also find that redistribution of clinics to the Milwaukee area increased utilization among Hispanics but not among African-Americans. Our interviews suggest that these patterns may be a function of shortcomings embedded in the planning models. IMPLICATIONS: Planning models have three shortcomings. First, they do not identify the mitigation of health disparities as a specific goal. Second, they fail to acknowledge that partners face escalating profit-seeking mandates that may limit their capacity to provide charity services. Finally, they underemphasize the importance of seeking trusted partners, especially in working with communities that have been historically marginalized. CONTRIBUTION: There has been little discussion about equitably leveraging genetic advances that improve healthcare quality and efficacy. The role of State Health Agencies in mitigating disparities in access to genetic services has been largely ignored in the sociological literature.

Community-Based Family Health History Education: The Role of State Health Agencies in Engaging Medically Underserved Populations in Understanding Genomics and Risk of Chronic Disease.

Although family health history (FHH) collection has been recognized as an influential method for assessing a person's risk of chronic disease, studies have shown that people who are low-income, from racial and ethnic minorities, and poorly educated are less likely to collect their FHH or share it with a medical professional. Programs to raise public awareness about the importance of FHH have conventionally targeted patients in primary care clinics or in the general community, but few efforts have been made to coordinate educational efforts across settings. This paper describes a project by the Connecticut Department of Public Health's Genomics Office to disseminate training materials about FHH as broadly as possible, by engaging partners in multiple settings: a local health department, a community health center, and two advocacy organizations that serve minority and immigrant populations. We used a mixed methods program evaluation to examine the efficacy of the FHH program and to assess barriers in integrating it into the groups' regular programming. Our findings highlight how a state health department can promote FHH education among underserved communities.

Bridging research and environmental regulatory processes: the role of knowledge brokers.

Federal funding agencies increasingly require research investigators to ensure that federally sponsored research demonstrates broader societal impact. Specifically, the National Institutes of Environmental Health Sciences (NIEHS) Superfund Research Program (SRP) requires research centers to include research translation and community engagement cores to achieve broader impacts, with special emphasis on improving environmental health policies through better scientific understanding. This paper draws on theoretical insights from the social sciences to show how incorporating knowledge brokers in research centers can facilitate translation of scientific expertise to influence regulatory processes and thus promote public health. Knowledge brokers connect academic researchers with decision-makers, to facilitate the translation of research findings into policies and programs. In this article, we describe the stages of the regulatory process and highlight the role of the knowledge broker and scientific expert at each stage. We illustrate the cooperation of knowledge brokers, scientific experts and policymakers using a case from the Brown University (Brown) SRP. We show how the Brown SRP incorporated knowledge brokers to engage scientific experts with regulatory officials around the emerging public health problem of vapor intrusion (VI). In the Brown SRP, the knowledge broker brought regulatory officials into the research process, to help scientific experts understand the critical nature of this emerging public health threat, and helped scientific experts develop a research agenda that would inform the development of timely measures to protect public health. Our experience shows that knowledge brokers can enhance the impact of environmental research on public health by connecting policy decision-makers with scientific experts at critical points throughout the regulatory process.

An ecological perspective on medical care: environmental, occupational, and public health impacts of medical supply and pharmaceutical chains.

Healthcare organizations are increasingly examining the impacts of their facilities and operations on the natural environment, their workers, and the broader community, but the ecological impacts of specific healthcare services provided within these institutions have not been assessed. This paper provides a qualitative assessment of healthcare practices that takes into account the life-cycle impacts of a variety of materials used in typical medical care. We conducted an ethnographic study of three medical inpatient units: a conventional cancer ward, palliative care unit, and a hospice center. Participant observations (73 participants) of healthcare and support staff including physicians, nurses, housekeepers, and administrators were made to inventory materials and document practices used in patient care. Semi-structured interviews provided insight into common practices. We identified three major domains that highlight the cumulative environmental, occupational health, and public health impacts of medical supplies and pharmaceuticals used at our research sites: (1) medical supply procurement; (2) generation, handling, and disposal of medical waste; and (3) pharmaceutical handling and disposal. Impacts discovered through ethnographic inquiry included occupational exposures to chemotherapy and infectious waste, and public health exposures to pharmaceutical waste. This study provides new insight into the environmental, occupational, and public health impacts resulting from medical practices. In many cases, the lack of clear guidance and regulations regarding environmental impacts contributed to elevated harms to the natural environment, workers, and the broader community.

Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: a case study.

BACKGROUND: We report on the challenges of obtaining Institutional Review Board (IRB) coverage for a community-based participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research. METHODS: We draw on our experiences guiding a multi-partner CBPR project through university and state Institutional Review Board reviews, and other CBPR colleagues' written accounts and conference presentations and discussions. We also interviewed academics involved in CBPR to learn of their challenges with Institutional Review Boards. RESULTS: We found that Institutional Review Boards are generally unfamiliar with CBPR, reluctant to oversee community partners, and resistant to ongoing researcher-participant interaction. Institutional Review Boards sometimes unintentionally violate the very principles of beneficence and justice which they are supposed to uphold. For example, some Institutional Review Boards refuse to allow report-back of individual data to participants, which contradicts the CBPR principles that guide a growing number of projects. This causes significant delays and may divert research and dissemination efforts. Our extensive education of our university Institutional Review Board convinced them to provide human subjects protection coverage for two community-based organizations in our partnership. CONCLUSIONS: IRBs and funders should develop clear, routine review guidelines that respect the unique qualities of CBPR, while researchers and community partners can educate IRB staff and board members about the objectives, ethical frameworks, and research methods of CBPR. These strategies can better protect research participants from the harm of unnecessary delays and exclusion from the research process, while facilitating the ethical communication of study results to participants and communities.

Demographic, physical, and mental health factors associated with deployment of U.S. Army soldiers to the Persian Gulf.

A total of 675,626 active duty Army soldiers who were known to be at risk for deployment to the Persian Gulf were followed from 1980 through the Persian Gulf War. Hospitalization histories for the entire cohort and Health Risk Appraisal surveys for a subset of 374 soldiers were used to evaluate prewar distress, health, and behaviors. Deployers were less likely to have had any prewar hospitalizations or hospitalization for a condition commonly reported among Gulf War veterans or to report experiences of depression/suicidal ideation. Deployers reported greater satisfaction with life and relationships but displayed greater tendencies toward risk taking, such as drunk driving, speeding, and failure to wear safety belts. Deployed veterans were more likely to receive hazardous duty pay and to be hospitalized for an injury than nondeployed Gulf War-era veterans. If distress is a predictor of postwar morbidity, it is likely attributable to experiences occurring during or after the war and not related to prewar exposures or health status. Postwar excess injury risk may be explained in part by a propensity for greater risk taking, which was evident before and persisted throughout the war.

Tangible evidence, trust and power: public perceptions of community environmental health studies.

Communities with environmental health concerns in the USA frequently request studies from their local or state departments of public health. This paper presents findings from three focus groups conducted in communities north of Boston that have been the subject of two different environmental health studies. The focus groups were designed to elicit residents' perceptions of environmental health, and of the particular studies conducted in their communities. In all focus groups, participants had difficulty accepting the findings of health studies that contradicted their own experiences of environmental exposures and illness. Our results suggest that lay knowledge, informed in varying degrees by the experience of what we term "tangible evidence," creates a lens through which communities interpret a health study's findings. The differences in reliance on tangible evidence were related to participants' sense of trust in public officials, and the institutions responsible for conducting health studies. Participants from the wealthier, predominantly white communities discussed trust in study design and methodologies used. In contrast, participants from the lower-income, higher-minority communities assessed health studies with reference to their trust (or lack thereof) in study sponsors and public health institutions. Participants' experience of tangible evidence, trust or distrust in health agencies and research institutions, and a sense of relative community power, influence how they assess the findings of environmental health studies and may have implications for pubic health.

Brown Superfund Basic research Program: a multistakeholder partnership addresses real-world problems in contaminated communities.

The NIEHS funds several basic and applied research programs, many of which also require research translation or outreach. This paper reports on a project by the Brown University Superfund Basic Research Program (SBRP), in which outreach and research translation teams collaborated with state regulatory agency personnel and community activists on a legislative initiative to mitigate the financial impacts of living in a contaminated community. The Environmentally Compromised Home Ownership (ECHO) program makes home equity loans of up to $25,000 available to qualified applicants. This collaboration provides a case study in community engagement and demonstrates how research translation and outreach activities that are clearly differentiated yet well-integrated can improve a suite of basic and applied research. Although engaging diverse constituencies can be difficult community-engaged translation and outreach have the potential to make research findings more useful to communities, address some of the social impacts of contamination, and empower stakeholders to pursue their individual and collectively held goals for remediation. The NIEHS has recently renewed its commitment to community-engaged research and advocacy, making this an optimal time to reflect on how basic research programs that engage stakeholders through research translation and outreach can add value to the overall research enterprise.

Drinking and spouse abuse among U.S. Army soldiers.

BACKGROUND: This study examines the relationship between typical weekly drinking and perpetration of spouse abuse as well as the relationship between the perpetrator's typical weekly drinking and alcohol use during the abuse event among U.S. Army male soldiers. METHODS: Cases include all active duty, male, enlisted Army spouse abusers identified in the Army's Central Registry who had also completed an Army Health Risk Appraisal Survey (HRA) between 1991 and 1998 (N = 9534). Cases were matched on sex, rank, and marital status with 21,786 control subjects who had also completed an HRA. RESULTS: In multivariate logistic regression models, heavy drinkers (22 or more drinks per week) were 66% more likely to be spouse abusers than were abstainers (odds ratio 1.66; 95% confidence interval 1.40-1.96). In addition, self-reported moderate and heavy drinkers were three times as likely and light drinkers (1-7 drinks per week) were twice as likely as nondrinkers to be drinking during the time of the abuse event. CONCLUSION: Self-reported heavy drinking is an independent risk factor for perpetration of spouse abuse among male, enlisted Army soldiers. Even 5 years or more after ascertainment of typical drinking habits, there is a significant association between self-reported heavy drinking and alcohol involvement at the time of the spouse abuse event. Personnel who work with perpetrators and victims of spouse abuse should be trained carefully to query about current and typical drinking patterns.

The reliability and validity of the self-reported drinking measures in the Army's Health Risk Appraisal survey.

BACKGROUND: The reliability and validity of self-reported drinking behaviors from the Army Health Risk Appraisal (HRA) survey are unknown. METHODS: We compared demographics and health experiences of those who completed the HRA with those who did not (1991-1998). We also evaluated the reliability and validity of eight HRA alcohol-related items, including the CAGE, weekly drinking quantity, and drinking and driving measures. We used Cohen's kappa and Pearson's r to assess reliability and convergent validity. To assess criterion (predictive) validity, we used proportional hazards and logistical regression models predicting alcohol-related hospitalizations and alcohol-related separations from the Army, respectively. RESULTS: A total of 404,966 soldiers completed an HRA. No particular demographic group seems to be over- or underrepresented. Although few respondents skipped alcohol items, those who did tended to be older and of minority race. The alcohol items demonstrate a reasonable degree of reliability, with Cronbach's alpha = 0.69 and test-retest reliability associations in the 0.75-0.80 range for most items over 2- to 30-day interims between surveys. The alcohol measures showed good criterion-related validity: those consuming more than 21 drinks per week were at 6 times the risk for subsequent alcohol-related hospitalization versus those who abstained from drinking (hazard ratio, 6.36; 95% confidence interval=5.79, 6.99). Those who said their friends worried about their drinking were almost 5 times more likely to be discharged due to alcoholism (risk ratio, 4.9; 95% confidence interval=4.00, 6.04) and 6 times more likely to experience an alcohol-related hospitalization (hazard ratio, 6.24; 95% confidence interval=5.74, 6.77). CONCLUSIONS: The Army's HRA alcohol items seem to elicit reliable and valid responses. Because HRAs contain identifiers, alcohol use can be linked with subsequent health and occupational outcomes, making the HRA a useful epidemiological research tool. Associations between perceived peer opinions of drinking and subsequent problems deserve further exploration.