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Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.

ABSTRACT: Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources-a "cancer gene variant commons"-incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers.

SUBMITTER: Majumder MA

PROVIDER: S-EPMC8305920 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature

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Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.

Majumder Mary A MA Blank Matthew L ML Geary Janis J Bollinger Juli M JM Guerrini Christi J CJ Robinson Jill Oliver JO Canfield Isabel I Cook-Deegan Robert R McGuire Amy L AL

Journal of personalized medicine 20210708 7

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources-a "cancer gene variant commons"-incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy ...[more]

PMID: 34357113

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Project description:ObjectiveFor large, integrated healthcare delivery systems, coordinating patient care across delivery systems with providers external to the system presents challenges. We explored the domains and requirements for care coordination by professionals across healthcare systems and developed an agenda for research, practice and policy.DesignThe modified Delphi approach convened a 2-day stakeholder panel with moderated virtual discussions, preceded and followed by online surveys.SettingThe work addresses care coordination across healthcare systems. We introduced common care scenarios and differentiated recommendations for a large (main) healthcare organisation and external healthcare professionals that contribute additional care.ParticipantsThe panel composition included health service providers, decision makers, patients and care community, and researchers. Discussions were informed by a rapid review of tested approaches to fostering collaboration, facilitating care coordination and improving communication across healthcare systems.Outcome measuresThe study planned to formulate a research agenda, implications for practice and recommendations for policy.ResultsFor research recommendations, we found consensus for developing measures of shared care, exploring healthcare professionals' needs in different care scenarios and evaluating patient experiences. Agreed practice recommendations included educating external professionals about issues specific to the patients in the main healthcare system, educating professionals within the main healthcare system about the roles and responsibilities of all involved parties, and helping patients better understand the pros and cons of within-system and out-of-system care. Policy recommendations included supporting time for professionals with high overlap in patients to engage regularly and sustaining support for care coordination for high-need patients.ConclusionsRecommendations from the stakeholder panel created an agenda to foster further research, practice and policy innovations in cross-system care coordination.

Project description:BACKGROUND:In the last 20 years governments have sought to introduce policy that improves the quality of care provided in hospitals, yet little research has been done to understand how these policies are implemented, factors that affect the implementation process or what should be considered by decision-makers during policy development or implementation planning. Experts with real-life experience in the introduction and implementation of policy are best placed to provide valuable insight into practical issues that affect implementation and the associated outcomes of these policies. METHODS:A modified Delphi study of experts in hospital policy development and implementation was undertaken to investigate factors influencing the implementation of government-directed policy in the hospital setting. This study built on the findings of two previous studies - a qualitative study of clinician perspectives of policy implementation and a systematic review and meta-synthesis, in which common contextual factors and policy characteristics associated with policy implementation were ascertained. International experts with extensive experience in government-directed policy implementation at global, national, corporate, jurisdictional and organisational levels were asked to provide opinions on predetermined factors and the feasibility of considering these in policy development and implementation planning. Survey design and analysis was guided by the Consolidated Framework for Implementation Research. RESULTS:Eleven experts from four countries and with different health system perspectives participated in the study. Consensus was reached on the importance of all predetermined factors in the first survey round with additional factors for investigation highlighted by participants for examination in subsequent rounds. On study completion, expert consensus was reached on 24 factors of importance; only 20 of these factors reached consensus for feasibility. CONCLUSIONS:Study findings indicated that, whilst there are multiple factors of importance in policy implementation across all Consolidated Framework for Implementation Research domains, some factors, such as establishment of roles and responsibilities for implementation and organisational lines of accountability, are feasible for consideration at a hospital level only. In addition, four factors did not reach consensus in terms of feasibility, indicating that it may not be practical to consider all factors of importance when implementing policy; this has important implications for implementation planning and resource allocation.

Project description:BackgroundPrehypertension is a preclinical state of hypertension which leads to an increased likelihood of coronary heart disease, myocardial infarction, cerebrovascular disease as well as target organ damage. Addressing pre-hypertension through early lifestyle interventions is crucial to mitigating these detrimental effects and improving long-term health outcomes. So, the main objective of this study is to develop a lifestyle intervention program (LSIP) for the management of prehypertension using consensus building approach.MethodsIt was a three round online modified Delphi study with 70 members panellists. All panellists had an experience of prehypertension either as patients (n = 30) or professionals (n = 40). Round 1 included initial recommendations developed from a previous systematic review and metanalysis, which were rated by panellists for their importance on a 5-point Likert scale. Panellists could also suggest additional items in the Round 1. Round 2 and 3 included all items from the Round 1 with new items suggested by the panellists. Data was analysed descriptively using SPSS version 29. All items receiving at least 70% of all respondents combined rating of 'Important' and 'Very Important' in Round 3 were included in the final set of recommendations.ResultsFifty-one panellists (80.9%) (patients = 25, professionals = 26) completed Round 3. Twenty-six recommendation items were included in the Round 1. Twenty new items were added in Round 2 with 46 total items in Round 2 and 3. Thirty-five of these items reached consensus in Round 3. The final set of recommendation comprised of 15 educational. 10 dietary, and 10 exercise recommendations.ConclusionThis modified Delphi study developed a comprehensive LSIP for the prevention of prehypertension, incorporating a holistic approach with educational, dietary, and exercise components aimed at the general population. Previously established standards of care (SOC) for managing prehypertension varied significantly and often provided fragmented guidance particularly on physical activity and education. This preventive model offers a novel and scalable approach for early intervention in prehypertension, potentially reducing reliance on medications and improving long-term health outcomes.

Dataset Information

Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.

Publications

Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.

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