Dataset Information

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia.

ABSTRACT:

Background

Decades of research have transformed hemophilia from severely limiting children's lives to a manageable disorder compatible with a full, active life, for many in high-income countries. The direction of future research will determine whether exciting developments truly advance health equity for all people with hemophilia (PWH). National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network conducted extensive inclusive all-stakeholder consultations to identify the priorities of people with inherited bleeding disorders and those who care for them.

Research design and methods

Working group (WG) 1 of the NHF State of the Science Research Summit distilled the community-identified priorities for hemophilia A and B into concrete research questions and scored their feasibility, impact, and risk.

Results

WG1 defined 63 top priority research questions concerning arthropathy/pain/bone health, inhibitors, diagnostics, gene therapy, the pediatric to adult transition of care, disparities faced by the community, and cardiovascular disease. This research has the potential to empower PWH to thrive despite lifelong comorbidities and achieve new standards of wellbeing, including psychosocial.

Conclusions

Collaborative research and care delivery will be key to capitalizing on current and horizon treatments and harnessing technical advances to improve diagnostics and testing, to advance health equity for all PWH.

SUBMITTER: Tran DQ

PROVIDER: S-EPMC10020869 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature

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Publications

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia.

Tran Duc Q DQ Benson Craig C CC Boice Judith A JA Chitlur Meera M Dunn Amy L AL Escobar Miguel A MA Gupta Kalpna K Johnsen Jill M JM Jorgenson James J Martin Scott D SD Martin Suzanne S Meeks Shannon L SL Narvaez Alfredo A AA Quon Doris V DV Reding Mark T MT Reiss Ulrike M UM Savage Brittany B Schafer Kim K Steiner Bruno B Thornburg Courtney C Volland Lena M LM von Drygalski Annette A

Expert review of hematology 20230301 sup1

<h4>Background</h4>Decades of research have transformed hemophilia from severely limiting children's lives to a manageable disorder compatible with a full, active life, for many in high-income countries. The direction of future research will determine whether exciting developments truly advance health equity for all people with hemophilia (PWH). National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network conducted extensive inclusive all-stakeholder consultations to ident ...[more]

PMID: 36920859

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Project description:IntroductionThe effectiveness of community-based participatory research (CBPR) partnerships to address health inequities is well documented. CBPR integrates knowledge and perspectives of diverse communities throughout the research process, following principles that emphasize trust, power sharing, co-learning, and mutual benefits. However, institutions and funders seldom provide the time and resources needed for the critical stage of equitable partnership formation and development.MethodsSince 2011, the Detroit Urban Research Center, collaborating with other entities, has promoted the development of new community-academic research partnerships through two grant programs that combine seed funding with capacity building support from community and academic instructors/mentors experienced in CBPR. Process and outcomes were evaluated using mixed methods.ResultsFrom 2011 to 2021, 50 partnerships received grants ranging from $2,500 to $30,000, totaling $605,000. Outcomes included equitable partnership infrastructure and processes, innovative pilot research, translation of findings to interventions and policy change, dissemination to multiple audiences, new proposals and projects, and sustained community-academic research partnerships. All partnerships continued beyond the program; over half secured additional funding.ConclusionsKeys to success included participation as community-academic teams, dedicated time for partnership/relationship development, workshops to develop equity-based skills, relationships, and projects, expert community-academic instructor guidance, and connection to additional resources. Findings demonstrate that small amounts of seed funding for newly forming community-academic partnerships, paired with capacity building support, can provide essential time and resources needed to develop diverse, inclusive, equity-focused CBPR partnerships. Building such support into funding initiatives and through academic institutions can enhance impact and sustainability of translational research toward advancing health equity.

Project description:BackgroundIn 2016, the Canada-International HIV and Rehabilitation Research Collaborative established a framework of research priorities in HIV, aging and rehabilitation. Our aim was to review and identify any new emerging priorities from the perspectives of people living with HIV, clinicians, researchers, and representatives from community organizations.MethodsWe conducted a multi-stakeholder international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations. Stakeholders convened for a one-day Forum in Manchester, United Kingdom (UK) to discuss research priorities via a web-based questionnaire and facilitated discussions. We analyzed data using conventional content analytical techniques and mapped emerging priorities onto the foundational framework.ResultsThirty-five stakeholders from the UK(n = 29), Canada(n = 5) and Ireland(n = 1) attended the Forum, representing persons living with HIV or representatives from community-based organizations(n = 12;34%), researchers or academics(n = 10;28%), service providers(n = 6;17%), clinicians(n = 4;11%); and trainees(n = 4;11%). Five priorities mapped onto the Framework of Research Priorities across three content areas: A-Episodic Health and Disability Aging with HIV (disability, frailty, social participation), B-Rehabilitation Interventions for Healthy Aging across the Lifespan (role, implementation and impact of digital and web-based rehabilitation interventions) and C-Outcome Measurement in HIV and Aging (digital and web-based rehabilitation health technology to measure physical activity). Stakeholders indicated methodological considerations for implementing digital and web-based rehabilitation interventions into research and practice and the importance of knowledge transfer and exchange among the broader community.ConclusionResults highlight the sustained importance of the Framework of Research Priorities and provide further depth and areas of inquiry related to digital and web-based rehabilitation interventions and technology aging with HIV.

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Dataset Information

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia.

Background

Research design and methods

Results

Conclusions

Publications

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia.

Similar Datasets

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