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"Kerman, Benjamin"
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Perceived benefits and barriers to implementing precision preventive care: Results of a national physician survey
Polygenic risk scores (PRS) may improve risk-stratification in preventive care. Their clinical implementation will depend on primary care physicians’ (PCPs) uptake. We surveyed PCPs in a national physician database about the perceived clinical utility, benefits, and barriers to the use of PRS in preventive care. Among 367 respondents (participation rate 96.3%), mean (SD) age was 54.9 (12.9) years, 137 (37.3%) were female, and mean (SD) time since medical school graduation was 27.2 (13.3) years. Respondents reported greater perceived utility for more clinical action (e.g., earlier or more intensive screening, preventive medications, or lifestyle modification) for patients with high-risk PRS than for delayed or discontinued prevention actions for low-risk patients (p < 0.001). Respondents most often chose out-of-pocket costs (48%), lack of clinical guidelines (24%), and insurance discrimination concerns (22%) as extreme barriers. Latent class analysis identified 3 subclasses of respondents. Skeptics (n = 83, 22.6%) endorsed less agreement with individual clinical utilities, saw patient anxiety and insurance discrimination as significant barriers, and agreed less often that PRS could help patients make better health decisions. Learners (n = 134, 36.5%) and enthusiasts (n = 150, 40.9%) expressed similar levels of agreement that PRS had utility for preventive actions and that PRS could be useful for patient decision-making. Compared with enthusiasts, however, learners perceived greater barriers to the clinical use of PRS. Overall results suggest that PCPs generally endorse using PRS to guide medical decision-making about preventive care, and barriers identified suggest interventions to address their needs and concerns.
Journal Article
Patient and provider perspectives on polygenic risk scores: implications for clinical reporting and utilization
Background
Polygenic risk scores (PRS), which offer information about genomic risk for common diseases, have been proposed for clinical implementation. The ways in which PRS information may influence a patient’s health trajectory depend on how both the patient and their primary care provider (PCP) interpret and act on PRS information. We aimed to probe patient and PCP responses to PRS clinical reporting choices
Methods
Qualitative semi-structured interviews of both patients (
N
=25) and PCPs (
N
=21) exploring responses to mock PRS clinical reports of two different designs: binary and continuous representations of PRS.
Results
Many patients did not understand the numbers representing risk, with high numeracy patients being the exception. However, all the patients still understood a key takeaway that they should ask their PCP about actions to lower their disease risk. PCPs described a diverse range of heuristics they would use to interpret and act on PRS information. Three separate use cases for PRS emerged: to aid in gray-area clinical decision-making, to encourage patients to do what PCPs think patients should be doing anyway (such as exercising regularly), and to identify previously unrecognized high-risk patients. PCPs indicated that receiving “below average risk” information could be both beneficial and potentially harmful, depending on the use case. For “increased risk” patients, PCPs were favorable towards integrating PRS information into their practice, though some would only act in the presence of evidence-based guidelines. PCPs describe the report as more than a way to convey information, viewing it as something to structure the whole interaction with the patient. Both patients and PCPs preferred the continuous over the binary representation of PRS (23/25 and 17/21, respectively). We offer recommendations for the developers of PRS to consider for PRS clinical report design in the light of these patient and PCP viewpoints.
Conclusions
PCPs saw PRS information as a natural extension of their current practice. The most pressing gap for PRS implementation is evidence for clinical utility. Careful clinical report design can help ensure that benefits are realized and harms are minimized.
Journal Article
A Promising Place-Based Collaborative Impact Investing Fund Strengthens Community and Informs Philanthropic Practice
A recent evaluation of the Western New York Impact Investment Fund adds to the proof-of-concept literature regarding \"doing good and doing well.\" The fund brings together corporate, individual, and philanthropic investors to deliver an inclusive impact investment mechanism. Evaluation at Year 5 describes how the professionally managed, collaboratively governed fund has attracted and deployed capital, contributing to ecosystem improvements and concrete results. Portfolio companies have created jobs with livable wages, reduced carbon footprints, reclaimed abandoned space, and committed to maintain operations in the region long term. Keywords: Social impact investing, evaluation, philanthropy, community strengthening
Journal Article
Achieving Permanence for Older Children and Youth in Foster Care
Through a novel integration of child welfare data, policy analysis, and evidence-informed youth permanency practice, the essays in this volume show how to achieve and sustain family permanence for older children and youth in foster care. Researchers examine what is known about permanency outcomes for youth in foster care, how the existing knowledge base can be applied to improve these outcomes, and the directions that future research should take to strengthen youth permanence practice and policy. Part 1 examines child welfare data concerning reunification, adoption, and relative custody and guardianship and the implications for practice and policy. Part 2 addresses law, regulation, court reform, and resource allocation as vital components in achieving and sustaining family permanence. Contributors examine the impact of policy change created by court reform and propose new federal and state policy directions. Part 3 outlines a range of practices designed to achieve family permanence for youth in foster care: preserving families through community-based services, reunification, adoption, and custody and guardianship arrangements with relatives. As growing numbers of youth continue to \"age out\" of foster care without permanent families, researchers, practitioners, and policymakers have increasingly focused on developing evidence-informed policies, practices, services and supports to improve outcomes for youth. Edited by leading professionals in the field, this text recommends the most relevant and effective methods for improving family permanency outcomes for older youth in foster care.
eBook
End-Game Evaluation: Building a Legacy of Learning In a Limited-Life Foundation
Foundation, this urgency has helped generate demand and attention for evaluation, ensuring that it is adequately prioritized, resourced, and concentrated in areas where the opportunities for learning and influence are greatest. [...]enlisting the attention of program staff is difficult; no matter how well they understand and believe in the importance of evaluation, the time-sensitive demands of their grantmaking responsibilities can hamper their ability to focus on it. In this context, we have found that a proactive approach to evaluation planning and implementation is essential. Because time is short, it is a consideration in every aspect of the planning process - from what to prioritize (see Hypothesis 4), to which methods to use (see Hypothesis 6), and even how to prepare for contingencies, knowing that time will limit the range of course corrections at our disposal. Big Programmatic Bets Create Big Opportunities for Learning - and Accelerating Impact By definition, when a foundation spends down it liquidates and distributes all of its assets, and, as a result, it typically operates with a far larger grantmaking budget during its final years than it would if it remained perpetual. With these resources, a limited-life foundation may be able to place \"big bets\" to advance solutions to societal problems within a defined time frame.1 Big bets play a central role in Atlantic's grantmaking; a Bridgespan study found that Atlantic has directed 50 percent more of these investments to social-change causes than other U.S. philanthropies, on average (Powell, Huang, Foster, Boyd, & Sakaue, 2016).2 Similarly,...
Journal Article
Permanence Is a State of Security and Attachment
Richard Barth and Laura Chintapalli (chapter 5 in this volume) provide a rich review of recent research documenting the challenges of achieving permanence for adolescents in the child welfare system. They describe evidence that adolescents in foster care are likely to experience “a heightened state of impermanence” as a result of placement instability, failed reunification and reentry, lengthy stays in group care, and termination of parental rights (TPR) without subsequent adoption. Poor outcomes among youth who age out of foster care are viewed as a direct result of the failure to achieve permanence for youth in care. Both interventions and
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