Community Health Center Staff Perspectives on Financial Payments for Social Care.

Policy Points State and federal payers are actively considering strategies to increase the adoption of social risk screening and interventions in health care settings, including through the use of financial incentives. Activities related to social care in Oregon community health centers (CHCs) provided a unique opportunity to explore whether and how fee-for-service payments for social risk screening and navigation influence CHC activities. CHC staff, clinicians, and administrative leaders were often unaware of existing financial payments for social risk screening and navigation services. As currently designed, fee-for-service payments are unlikely to strongly influence CHC social care practices. CONTEXT: A growing crop of national policies has emerged to encourage health care delivery systems to ask about and try to address patients' social risks, e.g., food, housing, and transportation insecurity, in care delivery contexts. In this study, we explored how community health center (CHC) staff perceive the current and potential influence of fee-for-service payments on clinical teams' engagement in these activities. METHODS: We interviewed 42 clinicians, frontline staff, and administrative leaders from 12 Oregon CHC clinical sites about their social care initiatives, including about the role of existing or anticipated financial payments intended to promote social risk screening and referrals to social services. Data were analyzed using both inductive and deductive thematic analysis approaches. FINDINGS: We grouped findings into three categories: participants' awareness of existing or anticipated financial incentives, uses for incentive dollars, and perceived impact of financial incentives on social care activities in clinical practices. Lack of awareness of existing incentives meant these incentives were not perceived to influence the behaviors of staff responsible for conducting screening and providing referrals. Current or anticipated meaningful uses for incentive dollars included paying for social care staff, providing social services, and supporting additional fundraising efforts. Frontline staff reported that the strongest motivator for clinic social care practices was the ability to provide responsive social services. Clinic leaders/managers noted that for financial incentives to substantively change CHC practices would require payments sizable enough to expand the social care workforce as well. CONCLUSIONS: Small fee-for-service payments to CHCs for social risk screening and navigation services are unlikely to markedly influence CHC social care practices. Refining the design of financial incentives-e.g., by increasing clinical teams' awareness of incentives, linking screening to well-funded social services, and changing incentive amounts to support social care staffing needs-may increase the uptake of social care practices in CHCs.

"I Have Fought for so Many Things": Disadvantaged families' Efforts to Obtain Community-Based Services for Their Child after Genomic Sequencing.

BACKGROUND: Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes. METHODS: We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic development were used to collaboratively interpret fieldnotes and transcripts. RESULTS: Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child's day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child. CONCLUSION: Families' ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers' - which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic.

The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research.

PURPOSE: This study aimed to understand broad data sharing decisions among predominantly underserved families participating in genomic research. METHODS: Drawing on clinic observations, semistructured interviews, and survey data from prenatal and pediatric families enrolled in a genomic medicine study focused on historically underserved and underrepresented populations, this paper expands empirical evidence regarding genomic data sharing communication and decision-making. RESULTS: One-third of parents declined to share family data, and pediatric participants were significantly more likely to decline than prenatal participants. The pediatric population was significantly more socioeconomically disadvantaged and more likely to require interpreters. Opt-in was tied to altruism and participants' perception that data sharing was inherent to research participation. Opt-out was associated with privacy concerns and influenced by clinical staff's presentation of data handling procedures. The ability of participants to make informed choices during enrollment about data sharing was weakened by suboptimal circumstances, which was revealed by poor understanding of data sharing in follow-up interviews as well as discrepancies between expressed participant desires and official recorded choices. CONCLUSION: These empirical data suggest that the context within which informed consent process is conducted in clinical genomics may be inadequate for respecting participants' values and preferences and does not support informed decision-making processes.

The Challenge of Recruiting Diverse Populations into Health Research: An embedded social science perspective.

Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This exploration of challenges is undertaken from the perspective of social science researchers embedded in a large within a clinical genomics research study. We suggest that these challenges are found in respect to the development of recruiting strategies, analysis of the data in respect to understanding and interpreting the experiences of being medically underserved, and in comparing the experiences of being medically underserved compared to not being underserved. By way of conclusion, it is argued that there is important role for social scientists with large health research studies which, if achieved successfully, can benefit study teams and society as a whole.

Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium.

INTRODUCTION: Ensuring equitable access to health care is a widely agreed-upon goal in medicine, yet access to care is a multidimensional concept that is difficult to measure. Although frameworks exist to evaluate access to care generally, the concept of "access to genomic medicine" is largely unexplored and a clear framework for studying and addressing major dimensions is lacking. METHODS: Comprised of seven clinical genomic research projects, the Clinical Sequencing Evidence-Generating Research consortium (CSER) presented opportunities to examine access to genomic medicine across diverse contexts. CSER emphasized engaging historically underrepresented and/or underserved populations. We used descriptive analysis of CSER participant survey data and qualitative case studies to explore anticipated and encountered access barriers and interventions to address them. RESULTS: CSER's enrolled population was largely lower income and racially and ethnically diverse, with many Spanish-preferring individuals. In surveys, less than a fifth (18.7%) of participants reported experiencing barriers to care. However, CSER project case studies revealed a more nuanced picture that highlighted the blurred boundary between access to genomic research and clinical care. Drawing on insights from CSER, we build on an existing framework to characterize the concept and dimensions of access to genomic medicine along with associated measures and improvement strategies. CONCLUSIONS: Our findings support adopting a broad conceptualization of access to care encompassing multiple dimensions, using mixed methods to study access issues, and investing in innovative improvement strategies. This conceptualization may inform clinical translation of other cutting-edge technologies and contribute to the promotion of equitable, effective, and efficient access to genomic medicine.

Comparing Patients' Experiences with Electronic and Traditional Consultation: Results from a Multisite Survey.

BACKGROUND: There have been no large-scale studies to date of patients' experiences with electronic consultation (eConsult) between primary and specialty care. OBJECTIVE: Compare experiences with eConsult and referral for in-person specialist consultation. DESIGN: Online survey 2-6 weeks following eConsult or referral at 9 US academic medical centers. PARTICIPANTS: Adult patients with no more than one eConsult or referral order from a primary care provider (PCP) in the prior month. Over 9 months, 29,291 email invitations were sent (88% referral; 12% eConsult). MAIN MEASURES: Trust in and satisfaction with PCP; consult type awareness; agreement with decision to seek specialist input; timeliness of care; mode of PCP-patient eConsult communication; satisfaction with specialist's recommendations; future preference for eConsult or referral. KEY RESULTS: A 27.6% response rate yielded 8087 respondents (88.4% referral; 11.6% eConsult). Many did not know that their PCP had placed a referral (32.8% unaware) or eConsult (52.9%), and eConsult awareness was significantly higher among patients reporting better health (OR 1.62, 95% CI 1.18-2.23). Most (81.4% eConsult; 82.0% referral) were satisfied with the specialist's recommendations. Those who had a good primary care experience were more likely to be satisfied (eConsult: OR 10.63, 95% CI 2.95-38.32; referral: OR 2.87, 95% CI 1.86-4.44). For a similar problem in the future, 78% of eConsult and 32% percent of referral patients preferred eConsult. CONCLUSIONS: This multisite study demonstrates that many patients find virtual consultation to be an acceptable strategy for the management of their medical condition and that trust and confidence in one's PCP are crucial ingredients for a satisfying eConsult experience. The lack of awareness of eConsult among many patients who were beneficiaries of the service warrants an increased effort to include patients in eConsult decision-making and communication. Further research is needed to assess eConsult acceptability and satisfaction in more diverse patient populations.

Patients Assess an eConsult Model's Acceptability at 5 US Academic Medical Centers.

PURPOSE: Electronic consultation (eConsult), involving asynchronous primary care clinician-to-specialist consultation, is being adopted at a growing number of health systems. Most evaluations of eConsult programs have assessed clinical and financial impacts and clinician acceptability. Less attention has been focused on patients' opinions. We set out to understand patient perspectives and preferences for hypothetical eConsult use at 5 US academic medical centers in the process of adopting an eConsult model. METHODS: We invited adult primary care patients to participate in focus groups. Participants were introduced to the eConsult model, considered its potential benefits and drawbacks, judged the acceptability of a hypothetical copay, and expressed their preferences for future involvement in eConsult decision making and communication. Thematic analysis was used for data interpretation. RESULTS: One focus group was conducted at each of the 5 sites with a total of 52 participants. Focus groups responded positively to the idea of eConsult, with quicker access to specialty care and convenience identified as key benefits. Approval was particularly high among those with a trusted primary care clinician. Preference for involvement in eConsult decision making and communication varied and enthusiasm about eConsult waned when a hypothetical copay was introduced. Concerns included potential misuse of eConsult and exclusion of the patient's illness narrative in the eConsult exchange. CONCLUSIONS: Primary care patients expressed strong support for eConsult, particularly when used by a trusted primary care clinician, in addition to voicing several concerns. Patient involvement in eConsult outreach and education efforts could help to enhance the model's effectiveness and acceptability.

Transitioning Patients From Specialty Care to Primary Care: What We Know and What We Can Do.

Growing demand for specialty care has resulted in longer wait times for appointments, particularly at US academic referral centers. A proportion of specialty visits are for routine follow-up care of stable problems, and there is evidence that primary care providers are willing and able to take responsibility for a significant proportion of these patients. However, little is known about how to transition care back to a referring primary care clinician in a manner that is acceptable to everyone involved. In this article, we describe social, legal, and financial barriers to effective care transition and propose communication strategies to overcome them.

Meaningful use in the safety net: a rapid ethnography of patient portal implementation at five community health centers in California.

OBJECTIVE: US health care institutions are implementing secure websites (patient portals) to achieve federal Meaningful Use (MU) certification. We sought to understand efforts to implement portals in "safety net" health care systems that provide services for low-income populations. MATERIALS AND METHODS: Our rapid ethnography involved visits at 4 California safety net health systems and in-depth interviews at a fifth. Visits included interviews with clinicians and executives ( n = 12), informal focus groups with front-line staff ( n = 35), observations of patient portal sign-up procedures and clinic work, review of marketing materials and portal use data, and a brief survey ( n = 45). RESULTS: Our findings demonstrate that the health systems devoted considerable effort to enlisting staff support for portal adoption and integrating portal-related work into clinic routines. Although all health systems had achieved, or were close to achieving, MU benchmarks, patients faced numerous barriers to portal use and our participants were uncertain how to achieve and sustain "meaningful use" as defined by and for their patients. DISCUSSION: Health systems' efforts to achieve MU certification united clinic staff under a shared ethos of improved quality of care. However, MU's assumptions about patients' demand for electronic access to health information and ability to make use of it directed clinics' attention to enrollment and message routing rather than to the relevance and usability of a tool that is minimally adaptable to the safety net context. CONCLUSION: We found a mismatch between MU-based metrics of patient engagement and the priorities and needs of safety net patient populations.

Enacting the molecular imperative: How gene-environment interaction research links bodies and environments in the post-genomic age.

Despite a proclaimed shift from 'nature versus nurture' to 'genes and environment' paradigms within biomedical and genomic science, capturing the environment and identifying gene-environment interactions (GEIs) has remained a challenge. What does 'the environment' mean in the post-genomic age? In this paper, we present qualitative data from a study of 33 principal investigators funded by the U.S. National Institutes of Health to conduct etiological research on three complex diseases (cancer, cardiovascular disease and diabetes). We examine their research practices and perspectives on the environment through the concept of molecularization: the social processes and transformations through which phenomena (diseases, identities, pollution, food, racial/ethnic classifications) are re-defined in terms of their molecular components and described in the language of molecular biology. We show how GEI researchers' expansive conceptualizations of the environment ultimately yield to the imperative to molecularize and personalize the environment. They seek to 'go into the body' and re-work the boundaries between bodies and environments. In the process, they create epistemic hinges to facilitate a turn from efforts to understand social and environmental exposures outside the body, to quantifying their effects inside the body. GEI researchers respond to these emergent imperatives with a mixture of excitement, ambivalence and frustration. We reflect on how GEI researchers struggle to make meaning of molecules in their work, and how they grapple with molecularization as a methodological and rhetorical imperative as well as a process transforming biomedical research practices.

Accounting for Complexity: Gene-environment Interaction Research and the Moral Economy of Quantification.

Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene-environment interaction (GEI) research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral economy of science, in which researchers collectively enact competing ''virtues.'' Dominant virtues include molecular precision, in which behavioral and social risk factors are moved into the body, and ''harmonization,'' in which scientists create large data sets and common interests in multisited consortia. We describe the negotiations and trade-offs scientists enact in order to produce credible knowledge and the forms of (self-)discipline that shape researchers, their practices, and objects of study. We describe how prevailing techniques of quantification are premised on the shrinking of the environment in the interest of producing harmonized data and harmonious scientists, leading some scientists to argue that social, economic, and political influences on disease patterns are sidelined in postgenomic research. We consider how a variety of GEI researchers navigate quantification's productive and limiting effects on the science of etiological complexity.