Appendix C: Agency Report

Agency Report

MPH@Baylor Program

Marissa C. Melton

Dr. Keri Norris, PhD, MPH, JM, MCHES, VP of Health Equity, Diversity, and Inclusion

Summer 2022

Overview

The National Hemophilia Foundation (NHF) serves people with bleeding disorders and their families, including individuals with Von Willebrand Disease (VWD). The primary health issue affecting the VWD community is lack of equitable care and information. VWD is the most common bleeding disorder and affects up to 1% of the general population (Centers for Disease Control and Prevention (CDC), 2020). The disease occurs in both men and women equally, but women are more likely to notice symptoms because of abnormal bleeding during menstrual periods (CDC, 2021). Unfortunately, even though VWD is the most common inherited bleeding disorder, awareness among health care professionals is low (Sidonio et al., 2020). It is estimated that 35,000-387,000 patients may have symptomatic, undiagnosed VWD in the United States (Sidonio et al., 2020). Unfortunately, delayed diagnosis and treatment of VWD can lead to severe complications and low quality of life for individuals with the disorder. Increasing awareness and access to information on how to diagnose and treat the disorder is necessary to improve long term health outcomes and improving the quality of life of individuals living with the disease.

The purpose of this internship was to review and update resources in the VWD toolkit, and then create a one-year promotion plan for distributing the toolkit to the community. In 2021, the guideline recommendations for the diagnosis and treatment of VWD were updated. Therefore, toolkit resources needed to reflect these guidelines. Additionally, several social determinants of health affect access to care and health information. These needed to be identified so they could inform decisions about the toolkit and dissemination plan. Project goals included increasing awareness of the effects of structural bias and racism on the diagnosis and treatment of VWD (1), to update and promote the toolkit using different communication strategies for audiences (2), and to communicate an overview of the project (3). Associated objectives included writing an annotated bibliography and literature review to increase awareness of the determinants of health. The final MPH objectives resulted in the creation of an executive summary and presentation on project deliverables. Additional goals included discovering barriers to health education and promotion (4), resulting in the creation of the literature review and presentation mentioned above. The final goal (5) was to include perspectives and feedback on the toolkit from the priority population. Objectives included recruiting three individuals with VWD, an NHF education specialist, and an NHF expert in communications to provide feedback on the toolkit and to ensure that it met community needs. This project began on 04/01/2022 and was completed by 06/12/2022 in 277.50 hours.

This internship experience resulted in the completion of six project deliverables that can be used to support NHF and the VWD community in the future. Five determinants of health were identified as having the greatest impact on the burden of disease on the community. These identified determinants can be used to inform future projects to better serve the population. Furthermore, the toolkit benefits the service population because it provides the most up to date information on the disease and how to manage it. This will benefit individuals with VWD as it will empower them to advocate for themselves and increase their knowledge of their disorder.

Outcomes

Using a refined search protocol and inclusion/exclusion criteria, 15 peer reviewed articles were identified to be included in the annotated bibliography (See Appendix A) and literature review (See Appendix B). These deliverables were used to inform decisions regarding the toolkit modifications and recommendations, and the promotion plan. It identified people of color, women, rural communities, less economic stability/low socioeconomic status, and educational attainment as the determinants of health that affect the burden of disease on the community. Using the identified determinants of health and the 2021 guidelines on the diagnosis and management of VWD, recommendations were made to the toolkit. There were originally 21 resources in the toolkit, some were updated to reflect guidelines, others were updated to improve the visual representation of diversity (age, race, gender), and others required no changes or recommendations. Four resources were eliminated because they either were not applicable to the community or because they repeated information. In total, 17 resources were included in the final version of the toolkit (See Appendix C). Examples of toolkit resources and recommendations can be found in Appendix D. A one-year promotion plan was created to disseminate the toolkit to consumers (people with VWD), the chapter network, and the Hemophilia Treatment Center (HTC) network (See Appendix E). The plan specifies that all resources need to be available through electronic download or physical copy through mail order with NHF, through their chapter, or their HTC. This plan was reviewed with two members of NHF’s VWD education team and an NHF communication’s specialist. Furthermore, toolkit resources were reviewed with three people living with VWD, who are also members of NHF staff, to provide feedback and ensure they meet community needs. The final deliverables provided an overview of the project, including an executive summary (See Appendix F), and a PowerPoint presentation (See Appendix G). This presentation will be used in future meetings with chapters and HTCs to promote the toolkit.

After completion of the internship hours and the six project deliverables, NHF’s capacity, strengths, and weaknesses as an organization were evaluated. NHF conducts quantitative research on treatment options and barriers to care. This research provides them with data on the efficacy of their programs or initiatives and data on consumer’s access to resources or programs offered by the organization. However, there is a lack of qualitative research, or specific details, on how to better address issues within specific communities. Although all people with bleeding disorders are supported by NHF, there is a lack of information on how specific populations within the bleeding disorders community can better be supported. Additionally, NHF has been successful in creating initiatives to reduce the burden of determinants of health on the bleeding disorders community. However, some determinants such as transportation and economic stability have not been addressed or considered. Furthermore, although NHF has dedicated time and resources to understanding the needs of the diverse community, they have not collected sufficient data to determine the needs of cultural communities within the bleeding disorders population or how to best address those needs. NHF’s advocacy efforts are well established, and they have had success in advocating for policy such as the 340B Drug Pricing Program that is part of the Consolidated Appropriations Act of 2022, which designates hemophilia treatment centers as federally funded (HRSA, 2022). However, there are some areas where NHF should increase their advocacy efforts.

As a non-profit, NHF makes it a priority to involve community members in the decision-making process, with some staff members having different bleeding disorders. Involvement from the service population is critical to ensure education materials are appropriate and provide the wanted information. Unfortunately, there is a lack of diversity in the staff with most identifying as white, and within the leadership team there are only two women, and one person (woman) of color. Communication strategies used by the organization always involve an electronic/virtual platform and a physical/in person platform. They rely on the efforts of priority action teams (PATs) to discuss needs of every bleeding disorder group. This information is limited because it groups individuals with the same bleeding disorder to discuss their needs, but it does not consider the intersections of race or culture. Interprofessional practice is integral to the function of NHF, and they have established relationships with other organizations such as the World Federation of Hemophilia (WFH), the Hemophilia Federation (HFA), and the American Thrombosis and Hemostasis Network (ATHN). These organizations exist to support patients, clinicians, and other health care professionals in the world of hematology. Unfortunately, there is a lack of inter-organization collaboration with organizations that are not connected to the bleeding disorders space. Finally, NHF uses a systems thinking approach and considers the role of family and economic stability when creating interventions. However, they have not considered all the spheres of influence in the lives of persons with bleeding disorders.

Recommendations and Future Implications

Based on the analysis of NHF’s capacity, strengths, and weaknesses, some recommendations can be made. To improve evidence-based approaches to public health, NHF should increase use of qualitative research methods such as interviews and focus groups to better determine how populations such as the Hispanic/Latino community or the LGBTQ+ community can better be supported. Public health and health care systems can be improved by addressing determinants such as transportation and the digital divide. Initiatives could include phone buyback programs and Uber Health to ensure consumers get to their appointments on time and with little economic burden. All future interventions should be informed by determinants of health. Additional efforts should focus on deepening the cultural understanding of groups in the bleeding disorders community. Holding focus groups to discuss the specific needs and experiences of cultural communities such as Hispanic/Latino persons or Black/African American persons, will ensure their specific needs are met and how they should be prioritized.

In order to address the leadership issue with the majority of staff identifying as white, the organization should focus on implementing a new recruiting process that aims to hire 25% more people of color to the organization. This will improve diversity and inclusion to ensure the diverse populations served are represented and part of the decision-making process. Gaps in communication channels can be improved by creating working groups for Hispanic/Latino persons, Black/African American persons, Asian American/Pacific islanders, etc. This is important to improving communication between groups to ensure NHF can best support the communities it serves. Interprofessional practice can be improve by NHF staff presenting their findings and successes in addressing health equity at other conferences. This will increase awareness among other groups and strengthen interpersonal relationships by presenting NHF as an important player in this discussion. Finally, in order to improve their systems thinking approach, NHF should focus on providing support for individuals at the organization (school, work, etc.) level because it impacts consumer’s health and wellness.

NHF’s mission states that they are dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. This project aligns with their mission because it addressed a gap in education that was preventing individuals in the VWD community from having equitable access to information. The project outcomes demonstrate how using health determinants to inform decisions results in equitable dissemination and understanding. Future projects should be informed by determinants of health to ensure better reach and to improve NHF’s capacity to serve the inheritable bleeding disorders community. Internship outcomes can be used to inform NHF’s overall strategy as well. Throughout the year, especially during conferences or any engagement with community members, conducting research to better understand the community and their complex needs is extremely important. This information should be used to inform strategy to determine how to best serve the community and meet their needs.

Acknowledgements

Thank you to Dr. Keri Norris for being my mentor during this experience. I am extremely thankful for your guidance and mentorship that has made this so enriching for me. Thank you to Nikole Scappe, Marlee Whetten, and Brendan Hayes, for taking the time to share your experiences and knowledge with me. Thank you to Lena Volland for providing constant instruction on toolkit materials. Thank you to Ilana Ostrin for taking the time to share your expertise in communication with me. Finally, thank you to NHF for welcoming me with open arms into this amazing organization.

References

Centers for Disease Control and Prevention (CDC). (2020). Data and statistics on von Willebrand disease. Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/ncbddd/vwd/data.html

Centers for Disease Control and Prevention (CDC). (2021). What is Von Willebrand Disease? Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/ncbddd/vwd/facts.html

Sidonio, R. F., Jr, Zia, A., & Fallaize, D. (2020). Potential Undiagnosed VWD Or Other Mucocutaneous Bleeding Disorder Cases Estimated from Private Medical Insurance Claims. Journal of Blood Medicine, 11, 1–11. https://doi.org/10.2147/JBM.S224683