Research agenda and related workforce requirements inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research Collaborative
The National Research Blueprint (NRB) was a U.S. National Bleeding Disorders Foundation (NBDF) initiative to better understand all facets impacting research and to set the foundation for what and how inheritable bleeding disorders research should be done in the future. The personal journeys of Lived Experience Experts (LEEs), individuals living with disorders, are highly valuable. It is critical to incorporate them throughout all stages of future research. The NRB made sure LEEs were heard from the very beginning of the development process and throughout. The goal was to place diverse LEEs from across the community at the center of research, with all collaborative partners recognizing LEEs as equal partners.
One NRB working group developed a list of priorities to make future inheritable bleeding disorders research more inclusive and reflective of the community. They combined community input and medical, research, and lived experience expertise to choose 327 top research priorities. They ensured all priorities were feasible.
Another working group conducted a survey of the current workforce at bleeding disorders centers, often called hemophilia treatment centers (HTC). They asked the different professionals about their interest, capacity, and barriers in doing research. Based on the results, they proposed training and resources needed to develop a diverse workforce that can ensure successful future research.
There is a great potential for collaborative research across the country. HTCs can act as hubs in a network of national partnerships. The incorporation of LEEs as valued partners in this Bleeding Disorders Research Collaborative is imperative. Cross-training of LEEs, HTC professionals, and other researchers will be necessary to ensure its success.
Centering Lived Experience Experts and health equity in the Bleeding Disorders Research Collaborative
Lived Experience Expert, community engagement, policy, and health equity, diversity, and inclusion elements of the Bleeding Disorders Research Collaborative
Over the past several years, bleeding disorders advocates and other community leaders have worked together to create the National Research Blueprint for a new U.S. Bleeding Disorders Research Collaborative. Its goal is for research to be more inclusive and to better meet the needs of all people with inheritable bleeding disorders. The National Research Blueprint was developed through the support of the U.S. National Bleeding Disorders Foundation.
The Bleeding Disorders Research Collaborative will be driven by people with inheritable bleeding disorders, and their impacted caregivers and family members; a group referred to as Lived Experience Experts. A Research Ambassador Program will train diverse Lived Experience Experts to contribute to all research teams and projects. Their insights will be integrated into all areas including, but not limited to, choosing and designing studies, running them, and sharing information about research with the community. Researchers will be trained to communicate and collaborate effectively with Lived Experience Experts, so they can work well together.
Everything the Bleeding Disorders Research Collaborative does will firmly apply the principles of health equity, diversity, and inclusion. The National Bleeding Disorders Foundation and the Bleeding Disorders Research Collaborative must partner with others who share this vision for research that prioritizes and respects the needs and perspectives of all people with inheritable bleeding disorders. Together they must secure policies and funding supporting this way of doing research. The success of the proposed Bleeding Disorders Research Collaborative requires the collective backing and engagement of the entire community: researchers, healthcare providers, Lived Experience Experts, advocacy organizations, regulators, policymakers, funders, and industry.
Infrastructure and workforce development processes inspired by Lived Experience Experts and grounded in health equity for the Bleeding Disorders Research Collaborative
The National Research Blueprint is a proposal for a new Bleeding Disorders Research Collaborative (BDRC) doing the research people with bleeding disorders need and want. The people who live with a disorder, and their close family members affected by it, are Lived Experience Experts. The new collaborative will place Lived Experience Experts at the center of research. What research is done, how it is done, and how the results are used and shared must be decided in partnership with lived experience expertise. The collaborative must also advance health equity for all. Every initiative and project must improve diversity, inclusion, and belonging.
This paper proposes infrastructure and workforce development processes for the new research collaborative. Recommendations were developed by groups of clinical, research, lived experience, and health equity experts. The groups made sure everyone was able to contribute meaningfully and confidently. Every voice was heard and valued. This is also how the collaborative must operate, with shared leadership and teams that are trained to work well together. Education and processes are proposed to develop a diverse, inclusive interdisciplinary workforce, reflecting the community it serves and integrating lived experience expertise throughout. The proposed infrastructure is a network of expertise, resources, facilities, and processes, all connected by a platform. It is designed to start small, with just enough of each component to support a few simple projects. All projects will be evaluated to learn what works well and what can be improved. The whole collaborative will improve with learnings from each success and shortcoming.
Bleeding Disorders Research Collaborative: an opportunity for impact
Previous work led by the U.S. National Bleeding Disorders Foundation (NBDF) concluded that Lived Experience Experts (LEEs), people, who live with inheritable bleeding disorders and their impacted caregivers and family members, develop unique knowledge about their disorder. It also recommended a national research collaborative guided by the principles of health equity, diversity, and inclusion (HEDI). Now, in four accompanying papers, seven expert working groups propose Research and Development, Workforce, Infrastructure, LEE, HEDI, Community Engagement, and Policy elements for a new Bleeding Disorders Research Collaborative. These groups all included lots of input from LEEs and HEDI experts, as well as researchers and healthcare providers. They made sure the insights and needs of all people with inheritable bleeding disorders were valued in every part of the plan.
In this paper, we present an overview of the whole collaborative. It will start out small and develop by learning from every project. The infrastructure and workforce will grow progressively; partnerships will be key in bringing together all the resources and expertise needed. LEE insights will be integrated into every stage of every research project and in every part of the organization and governance. HEDI principles will be respected in every study and in how the collaborative runs. Education, training, and mentorship will help everyone gain the skills they need to work well together. Shared leadership of the collaborative will ensure transparency, accountability, and the guiding principles of mutual respect, authentic partnership, and respectful communication. If the inheritable bleeding disorders community joins forces and works together, we can accelerate research that advances health justice for all.
Demographic and Socioeconomic Characteristics of Females in the Community Voices in Research Registry
The Community Voices in Research registry is powered by the community and collects information about what it is like to live with a bleeding disorder from the people who know these conditions best: those with lived experience. This study describes a sample of female participants based on their diagnosis, race, ethnicity, income, age, employment, and education. Most participants identify as non-Hispanic and White. About half of the sample has a diagnosis of von Willebrand disease (VWD) or hemophilia A. The average age of participants is approximately 44 years. Most work full time, and the most commonly reported level of education is a high school diploma or equivalent. After adjusting for household size, the median annual income is about $23,000, with incomes ranging from $314 to $190,000. Researchers are continuing to study this sample to better understand how these demographic and socioeconomic factors relate to reproductive bleeding experiences among females. AI was used for this summary.
Bleeding Disorders Research Collaborative
The Bleeding Disorders Research Collaborative (BDRC) aims to advance an accessible standard of care and quality of life for all people living with inheritable bleeding disorders. This goal will be achieved through collaborative and meaningful scientific inquiry, coordinated by an efficient research infrastructure, and undertaken by a diverse, capacitated workforce in partnership with an engaged community. The BDRC is supported by facilitative research policy and grounded in the principles of health equity, diversity, inclusion, accessibility, and belonging, striving for dignity, safety, well-being, and opportunities leading to health justice. Importantly, the initiative is fully informed by Lived Experience Experts, people affected by inheritable bleeding disorders, who are key members in the research development, implementation, and dissemination team.
Glanzmann Thrombasthenia beyond bleeding: Insights from lived experience experts
Glanzmann Thrombasthenia (GT) is a rare inherited platelet disorder caused by a qualitative or quantitative defect of the glycoprotein IIb/IIIa complex. The bleeding phenotype, psychosocial impact, and patient perspectives in GT remain inadequately characterized. This abstract explores disease burden, unmet medical and psychological needs, and gaps in care associated with GT.
The relationship between different pain measures, depression, and social support and race and ethnicity in persons with hemophilia
Disparities in healthcare and health outcomes within minoritized and marginalized populations have been extensively documented in the literature. However, despite growing evidence that race/ethnicity may have a negative impact, few studies in BDs account for these variables when analyzing results. This analysis describes the relationship between age, birth sex, pain intensity, impact, and interference; depression, and social support and race/ethnicity in people with hemophilia A and B participating in CVR.
The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders
Lived experience experts: a name created by us for us
Soliciting international perspectives on an American national research agenda for inherited bleeding disorders
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding
The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary
Relationship between Perceived Social Support, Mental Health, Activity, and Chronic Pain in Persons with Inheritable Bleeding Disorders
The aim of this analysis was to describe the relationship between self-reported mental health diagnosis, history of mental health treatment, participation in physical activity, chronic pain, and social support. Persons with inheritable bleeding disorders with self-reported mental health conditions had at least 1 mental health comorbidity, report a lack of perceived social support and were less physically active than Persons with inheritable bleeding disorders without a self-reported mental health condition