Table 5.

Priority research questions in the areas of health services research; diversity, equity, and inclusion; and implementation science.

Priority#	Question
Health services research
1	Among PWIBD and their caregivers, do those who use telehealth visits have the same quality of care, satisfaction, adherence to treatment, and clinical
	and HRQoL outcomes as patients who are primarily treated in person?
2	Do behavioral health support services* beyond psychosocial assessments completed as a part of annual comprehensive care visits improve the patient experience and clinical and HRQoL outcomes? Do these services affect direct and/or indirect costs for inherited BD diagnosis and illness management?
3	How do the type and characteristics of insurance coverage affect patient access to HTC care, treatment, bleeding, and other clinical and HRQoL outcomes?
4	In PWIBD, how do care, treatment, and clinical and HRQoL outcomes of those receiving specialized/integrated care at HTCs compare to those outside the HTCs?
5	How do provision of care components (e.g. access to care, patient satisfaction, and treatment) and clinical and HRQoL outcomes of PWIBD from marginalized and minoritized populations** compare to PWIBD who do not identify as part of these populations?
Diversity, equity, and inclusion
1	What conscious and unconscious biases are present within HTCs and among the multidisciplinary care team? What interventions can be implemented to mitigate identified biases?
2	What policies/processes/practices can local and national patient organizations and other stakeholders implement to ensure active partnership with marginalized and minoritized populations in the development and implementation of data collection (e.g. registries, surveillance, clinical trials, research, repositories) and educational initiatives?
3	What data are viewed as important and meaningful to members of marginalized and minoritized populations that are not currently being collected by clinical trials/surveillance studies?
4	What are inequities in experiences of care between non-marginalized and marginalized populations in the HTC setting? (Conduct needs assessment to identify the problem.)
5	What are barriers and facilitators for marginalized and minoritized populations to substantively engage in the conceptualization, design, and conduct of research and to participate in research?
6	What programs and/or pilot projects should be implemented to mitigate individual provider behaviors, clinical and organizational structures, and other systems in place that hinder equitable delivery of care and services?
Implementation science
1	For any given evidence-based treatment/intervention, what elements need to be adapted to enhance fit and cultural relevance to a specific subpopulation (e.g. gender, language, marginalized and minoritized populations, etc.) or setting?
2	In HTCs caring for people with severe hemophilia, what practices, programs, or center characteristics lead to adherence to the prescribed treatment plan? What are factors that lead to concordance between PWIBD and HCP?
3	What data-driven benchmarks and requirements for implementation of, and adherence to, VWD and hemophilia guidelines in health systems (starting with the USHTCN) could be developed and monitored, which also include markers of outcomes specific to marginalized and minoritized populations?
4	In HTCs caring for PWIBD, what characteristics increase the adoption of evidence-based behavioral health support services and interventions for PWIBD?
5	What organizational factors, within HTCs or the institutions with which they are affiliated, promote or hinder health equity and antiracism within an organization/institution (e.g. organizational climate and culture; internal policies supporting equity; employee and leader attitudes and motivations regarding equity)?

^*Behavioral health support services are any service that aims to support mental health, well-being/QoL, pain management, and healthy lifestyles

^**Marginalized and minoritized populations include people who have been traditionally underserved, excluded, and/or oppressed based on a given social standing or some characteristic including but not limited to race, ethnicity, sex, gender identity, sexuality, age, income, disability status, language, culture, faith, geographic location, and country of birth

BD: bleeding disorder, HCP: health care professional, HRQoL: health-related quality of life, HTC: Hemophilia Treatment Center, PWIBD: person with an inherited bleeding disorder, QoL: quality of life, USHTCN: United States Hemophilia Treatment Center Network, VWD: von Willebrand disease