Appendix B: Graduate Project Report

Graduate Project Report

MPH@Baylor Program

Marissa C. Melton

Dr. Gregory Benjamin, PhD, MPH

Dr. Keri Norris, PhD, MPH, JM, MCHES

Summer 2022

Executive Summary

The National Hemophilia Foundation (NHF) serves people with all bleeding disorders and their family members. They support research that will impact people’s lives, deliver education to help people with bleeding disorders thrive, and advocate for policies that protect access to healthcare. NHF serves all inheritable bleeding disorders, including 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). This suggests that increased awareness and education of VWD, its symptoms, and recommended treatment would improve the quality of life of individuals living with VWD.

To increase awareness of VWD, its symptoms, and recommended treatments, NHF created a toolkit in 2019. However, in 2021, the guideline recommendations for the diagnosis and treatment of VWD were updated. Therefore, the internship projects included updating the VWD toolkit to reflect current guidelines and to create a promotion plan for the dissemination of the toolkit. Project goals (MPH goals) included increasing awareness of the effects of structural bias and racism on the diagnosis and treatment of VWD, to use communication strategies for different audiences, and to communicate an overview of the project. Associated objectives included writing an annotated bibliography and literature review to increase awareness of the determinants of health. The toolkit and promotion plan were created while considering different communication strategies. The final MPH objectives resulted in the creation of an executive summary and presentation on project deliverables. The community health competency goals included discovering barriers to health education and promotion, resulting in the creation of the literature review and presentation mentioned above. The final goal 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.

After completion of the internship hours, the six project deliverables, and analysis of the organization some recommendations have been made to increase the capacity and reach of NHF. To address research gaps, more longitudinal studies should be done to observe change in efficacy of NHF programs and self-efficacy of seeking care. To better address determinants of health, initiatives such as phone buyback programs and Uber Health should be used to improve access for consumers. Policy initiatives should also consider capping the cost of internet connectivity to ensure access regardless of income level. Furthermore, hiring more persons of color in leadership positions will improve leadership capacity and promote inclusivity. These recommendations, and others included in the report, are meant to improve NHF’s capacity to engage with their target population and provide better access to resources to support the community.

Preliminary Assessment

Health Issue

The primary health issue affecting the Von Willebrand Disease (VWD) community is a lack equitable care and information about the disorder. Although VWD is the most common inherited bleeding disorder, it is estimated that 35,000 to 387,000 patients may have symptomatic, undiagnosed VWD in the U.S. (Sidonio et al., 2020). Furthermore, awareness of VWD is low among health care professionals (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. Improving access to information on how to diagnose and treat the disorder is necessary to improve long term health outcomes. Improving access to this information can help patients to better manage their disease and advocate for themselves so that their health is protected. Improving access to information on standard treatment is important for family and friends of someone living with VWD. They need access to information so they can support the person with VWD and respond if they find themselves in a harmful situation. Furthermore, healthcare professionals need access to information regarding the diagnosis and treatment of VWD to properly treat and respond to patients with the disorder. Healthcare professionals who are not hematologists need increased medical education about the disorder so they can refer to specialists, who can care for these individuals. Increasing awareness and available education on VWD, its symptoms, and recommended treatment would improve health outcomes for individuals living with VWD.

Partnering Organization

The National Hemophilia Foundation (NHF) is a national non-profit that serves people with bleeding disorders and their families. Their mission states that NHF is 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. The organization is based in New York, NY, and employees approximately 90 staff members, based in 28 different states. NHF currently offers educational programs for consumers living with blood disorders, families/caregivers, and providers. These programs provide detailed information on different bleeding disorders, including VWD. The education series provides general information about VWD and is aimed at correcting misconceptions and increasing knowledge about the disorder. Steps for Living is an NHF educational campaign that provides thorough information on VWD and living with the disease throughout different stages of life. Steps for Living educates on how to manage the disease at different ages and addresses how to address activities such as travel, exercise, and relationships while living with VWD (National Hemophilia Foundation, 2019). NHF also focuses on advocacy for persons with blood disorders and their needs. NHF currently provides advocacy for access to affordable, quality treatments, and healthcare. They provide information and support on federal and state programs that are available. Finally, NHF understands that a world without bleedings disorders begins with research. They have invested more than $20 million to advance knowledge of the treatment of bleeding disorders (National Hemophilia Foundation, 2021). Specific to health equity, there is a Division of Health Equity, Diversity, and Inclusion (HEDI). Additionally, NHF has established the Health Equity Working Group that makes recommendations to ensure NHF’s programs and services meet the needs of the diverse bleeding disorders community (National Hemophilia Foundation, 2022). HEDI is currently in the beginning stages of building an equity and empowerment action model. This model will be used by NHF to propel what the organization does in the next seven to ten years.

Service Population

NHF is committed to serving people with blood or bleeding disorders and their family members. The blood or bleeding disorders supported include hemophilia A, hemophilia B, Von Willebrand disease, different factor deficiencies, and rare bleeding disorders. Specifically, Von Willebrand disease (VWD) is the most common bleeding disorder and affects up to 1% of the general population (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). Additionally, there are three types of VWD that differ in severity and treatment. Age demographics show that 5% of the population with VWD are 0-4 years, 29% are 5-13 years, 22% are 14-18 years, 29% are 19-44 years, and 15% are above age 45 (Elfein, 2021). Broken down by VWD type and ethnicity, individuals with type 1 are 1% American Indian/Alaska Native, 2% Asian, 7% Black or African American, 84% White, and 6% other. For type 2, 1% are American Indian/Alaska Native, 3% Asian, 9% Black or African American, 81% White, and 5% other. Finally, for type 3, 1% are American Indian/Alaska Native, 7% Asian, 9% Black or African American, 78% White, and 3% other (Elfein, 2021).

Unfortunately, there are several social determinants of health affecting the diagnosis and treatment of VWD. Unconscious bias based on irrelevant characteristics, such as race or gender, can lead to poor evaluation of a patient, further leading to delayed diagnosis and proper treatment (FitzGerald and Hurst, 2017). Specifically, women of color are most affected and can experience providers who do not believe them, which delays their treatment and can lead to further complications. Economic stability affects individuals with VWD as they must balance the cost of health care, medical bills, childcare, transportation, etc. Individuals who have a lower socioeconomic status struggle to afford these costs and manage their disease. Additionally, educational attainment is a determinant of health affecting the VWD community. Understanding the medical terminology and the intricacies of living VWD can be difficult, therefore, individuals with lower educational attainment can struggle to understand aspects of their disease. This hinders their treatment and can lead to low medication compliance.

MPH Foundational Competencies, Goals, and Objectives

MPH Foundational Competency #1

Discuss the means by which structural bias, social inequities, and racism undermine health and create challenges to achieving health equity at organizational, community, and societal levels (Public Health & Health Care Systems, #6)

As part of the development of the updated toolkit, an annotated bibliography and literature review were completed. This provided a review of the effects of structural bias, social inequities, and racism on the bleeding disorders community and the care they receive. This detailed the disproportionate effects on women and communities of color. The research from the annotated bibliography and literature review was used to identify specific barriers that affect the VWD community. This better understanding of the barriers to care was used to apply a health equity lens to the VWD toolkit and promotion plan to ensure content was appropriate and equitably distributed.

Goal #1: To increase NHF community and VWD community awareness of the effects of structural bias and racism on the diagnosis and treatment of individuals with VWD.

Objectives: By the end of this internship experience, I have:

- 1a: Written an annotated bibliography, complete with peer reviewed sources and an explanation of why these sources are important to the overall project goals.

- 1b: Conducted a literature review on the effects of health inequity on the diagnostic procedures and treatment of individuals with VWD.

MPH Foundational Competency #2

Select communication strategies for different audiences and sectors (Communication, #18)

While updating the VWD toolkit according to the 2021 guidelines and with a health equity lens, different communication strategies were considered. It was important that the information not only be communicated to patients, families, and health care providers but that it was understood by all. The information needed to be tailored to consider all comprehension levels and by all audiences and sectors. Furthermore, a one one-year promotional plan was developed. The toolkit will be promoted to the NHF and VWD communities beginning in August 2022 and will be promoted using different communication strategies defined in the promotion plan.

Goal #2: To update and promote the VWD toolkit while considering different communication strategies and the audiences who will receive the information.

Objectives: By the end of this internship experience, I have:

- 2a: Updated the VWD toolkit to consider different learning styles so that information can be absorbed and retained for all individuals, regardless of learning style or reading level.

- 2b: Created a one-year promotional plan for the VWD toolkit to be disseminated to the VWD community and NHF chapters.

MPH Foundational Competency #3

Communicate audience-appropriate public health content, both in writing and through oral presentation (Communication, #19)

After updating the VWD toolkit and creating a promotional plan, an executive summary was written that summarized the project. This covered the research, toolkit updates, and provided an overview of the promotional plan. A presentation was created and presented to NHF staff at the end of the internship experience. This presentation included an overview of the project and personal takeaways from the project.

Goal #3: To communicate and present an overview of the updated NHF toolkit project and promotional plan.

Objectives: By the end of this internship experience, I have:

- 3a: Created and submitted an executive summary of the project to the internship coordinator.

- 3b: Created and presented a presentation on the project to NHF staff.

Community Health Competencies, Goals, and Objectives

Community Health Concentration Competency #1

Describe factors that enhance or impede the process of health education/promotion (Area I, Competency 1.6)

As part of the development of the updated toolkit, a literature review was conducted that researched the effects of structural bias, social inequities, and racism and how those affected health education and promotion within the VWD community. This information was also presented in the final presentation to NHF staff.

Goal #4: To discover barriers to health education and promotion within the VWD community.

Objectives: By the end of the internship experience, I have:

- 4a: Conducted a literature review on the factors (i.e., of structural bias, social inequities, and racism) that affect health education and promotion.

- 4b: Created and presented a presentation on these limiting factors to NHF staff.

Community Health Concentration Competency #2

Integrate methods for involving priority populations, partners, and other stakeholders into the planning process (Area II, Competency 2.1)

As part of updating the VWD toolkit and its resources, it was important to involve input from the VWD community, different departments within NHF, and other stakeholders. Meetings were held with different departments within NHF to ensure toolkit content was correct and the promotional plan was feasible with NHF resources. Additionally, meetings were held with individuals who live with VWD to ensure the content is valuable and meets their needs.

Goal #5: To include perspectives and feedback on the toolkit from the priority population and NHF staff to ensure the toolkit meets community needs.

Objectives: By the end of the internship experience, I have

- 5a: Recruited three individuals with VWD, from NHF staff, to discuss toolkit perspectives and opinions.

- 5b: Discussed toolkit perspectives and feedback with a NHF marketing department representative and NHF education specialist.

Activities, Methods, and Results

In order to address goal #1: to increase NHF community and VWD community awareness of the effects of structural bias and racism on the diagnosis and treatment of individuals with VWD and objectives 1a, 1b, and 4a, an annotated bibliography and literature review were completed. A specific protocol was used to find published articles. The search engines used were the Baylor library site, Google Scholar, and PubMed. The first articles identified were the official guidelines on the diagnosis and management of VWD. Due to the specific nature of the topic, multiple search terms and phrases were used. The search terms included “von Willebrand disease,” “health equity,” “determinants of health,” “inheritable blood disorders,” “digital health equity,” “access to care,” and “women.” These terms were searched together, in different combinations, with the word AND separating them. This was done to ensure that the database used AND as a command to search the terms together. For example, “von Willebrand disease” AND “access to care” was used to locate articles that investigated barriers to care for individuals with VWD. This process was repeated in each data base. Inclusion criteria required that articles be included if they were published within the last five years. Articles were excluded if they were published outside of the United States, Canada, or Great Britain. Furthermore, articles were excluded if they did not identify barriers or made recommendations for future research or interventions. This refined search resulted in the inclusion of 15 peer reviewed articles in the annotated bibliography (See Appendix A) and literature review (See Appendix B). The literature review and annotated bibliography 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.

To address goal #2: to update and promote the VWD toolkit while considering different communication strategies and the audiences who will receive the information, and objective 2a, updates were made to the VWD toolkit and existing materials. The process was started by reading through the 2021 guidelines on the diagnosis and management of VWD. Understanding these changes was important to ensuring the toolkit aligned with this information. Then, using the identified determinants of health, recommendations and modifications were made. There were 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. Then, decisions were made about which resources to include in the final version of the toolkit. 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. Objective 2b was the creation of a promotion plan for dissemination of the toolkit (See Appendix E). This process began by speaking with NHF’s department of communications who provided information about the organization’s capacity for disseminating materials. Using this information, a one-year promotion plan was created that targets consumers (people with VWD), the chapter network, and the Hemophilia Treatment Center (HTC) network. 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. This plan will be used to equitably distribute the toolkit.

For goal #3: to communicate and present an overview of the updated NHF toolkit project and promotional plan, and to address objective 3a, an executive summary of the project was written (See Appendix F). This provides an overview of the annotated bibliography, literature review, toolkit updates, and promotion plan. Its purpose was to describe the project components to NHF staff. Objective 3b resulted in the creation of a PowerPoint presentation on the project (See Appendix G). This PowerPoint will be used in future meetings with chapters and HTCs to promote the toolkit as part of the dissemination plan. Similar to the executive summary, the presentation provided an overview of the project and its components to NHF staff. It outlined the impacting determinants of health and how they were considered when making recommendations to the toolkit. This presentation will be reused again in the future for presentations to chapter staff and HTC staff to further promote the toolkit.

Goal #4: to discover barriers to health education and promotion within the VWD community was addressed with objective 4a, the literature review mentioned earlier in this section, and objective 4b, the presentation mentioned earlier. Goal #5: to include perspectives and feedback on the toolkit from the priority population and NHF staff to ensure the toolkit meets community needs. This was addressed in objective 5a, where three individuals who live with VWD and are members of NHF staff provided their perspectives and opinions on the toolkit resources. The three individuals were all members of the education staff and were recommended through Dr. Keri Norris. PhD, JM, MPH, MCHES. Important perspectives included having information specifically written for women/girls and had Spanish versions available. Objective 5b involved the discussing perspectives and feedback on the promotion plan with NHF marketing/communications department representative and an NHF education specialist. Three education specialists provided their opinions as members of the VWD community. The marketing specialist provided input and gave an overview of resources available through NHF to disseminate information. They were also recommended by Dr. Norris. These perspectives were important to ensuring information will be equitably understood by the VWD community and will be equitably disseminated.

Integrative Analysis

Evidence-based Approaches to Public Health

NHF has a research department that provides funding for evidence-based research into the VWD community. They have invested more than $20 million to advance knowledge of the treatment of bleeding disorders (National Hemophilia Foundation, 2021). They continue to fund projects focused on gene therapy, new treatments, and health equity to improve access to health resources. NHF conducts quantitative research on treatment options and barriers to care. This research provides NHF 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. Therefore, NHF should increase use of focus groups or interviews to better determine how different populations such as the Hispanic/Latino community or the LGBTQ+ community can better be supported. NHF should also focus on understanding the priorities of these communities to ensure programs meet community needs.

Public Health & Health Care Systems

NHF has an established department of Health Equity, Diversity, and Inclusion (HEDI). This division has created the Health Equity Working Group that makes recommendations to ensure NHF’s programs and services meet the needs of the diverse bleeding disorders community (National Hemophilia Foundation, 2022). The identified determinants of health that affect the VWD community are race/ethnicity, women (gender), rural communities, less economic stability/low socioeconomic status, and educational attainment. Though this project bridged some of the education gap, it did not resolve transportation issues for individuals in rural areas or those who are limited by the digital divide. Therefore, different initiatives could be considered to bridge these gaps, such as phone buyback programs or the use of Uber Health to help patients attend their appointments. Future initiatives must be informed by the determinants of health to address health equity.

Planning & Management to Promote Health

The HEDI department at NHF focuses on ensuring programs and services meet the needs of the diverse community. They held the first Health Equity Summit this year to learn about concerns of the community and to identify access issues. Through this summit, the four problem areas were identified: access, policy/payer, mental health, and health systems navigation. Although this is useful information, it is limited because each community based on race and geographical location are doing to have different experiences and needs. This has resulted in a lack of information on the cultural needs of communities related to these areas of focus. Therefore, efforts can be improved by holding focus groups within specific cultural communities such as Hispanic/Latino persons, Native Americans, and Black/African American persons. These focus groups will allow HEDI to collect qualitative data on the specific needs of these communities and to learn how to prioritize based on culture.

Policy in Public Health

A current policy that supports the VWD community is the 340B Drug Pricing Program, part of the Consolidated Appropriations Act of 2022, which designates hemophilia treatment centers as federally funded (HRSA, 2022). Additionally, the Affordable Care Act of 2010 saw the expansion of coverage in addition to Medicare and Medicaid. These programs provide assistance to patients so they can afford their medications and treatments. In today’s digital age and with the effects of the COVID-19 pandemic, it has become important to address health equity challenges through a digital platform (Lyles et al., 2021). Many patients are limited by cost burden of living with VWD in addition to the cost of treatment. Although there is already policy in place to provide some financial assistance, there will always be indirect costs to treatment such as paying for internet access, transportation, cost of doctor’s visits, etc. Although NHF has advocated for different policy to support the bleeding disorders community, there are other areas where they should increase their advocacy efforts. For example, advocating for policy to cap the cost of internet access or policy that would cover costs of transportation to and from HTCs would reduce the burden of living with different blood disorders.

Leadership

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. However, the bleeding disorder community is very diverse, made up of individuals of all races, genders, and ages. Therefore, it is important for leadership to also reflect the diversity in the bleeding disorders community. Unfortunately, there is some lack of diversity in the leadership team and the staff. A majority of staff identify as white, and within the leadership team there are only two women, and one person (woman) of color. Therefore, in order to improve leadership and comradery throughout the organization, more people of color should be hired or moved into leadership positions. NHF should implement a new recruiting process that aims to hire 25% more people of color to the organization. Improving diversity and inclusion in NHF will ensure that diverse populations are represented at the table to contribute.

Communication

Effective communication strategies that are used are dissemination of materials through physical copies and through electronic copies. Due to the COVID-19 pandemic, NHF also holds virtual and in person seminars to support the community. Additional communication strategies include interpersonal communication and working with different teams/stakeholders. For any bleeding disorder (e.g., VWD, hemophilia A, hemophilia B, etc.) there are priority action teams (PATs) that meet monthly to review updates in the community and to discuss needs. Although there are PATs for each bleeding disorder, there are not any corresponding teams for Hispanic/Latinx persons, Black/African Americans, etc. This gap in communication could be resolved by creating a Hispanic/Latinx working group, a Black/African American working group, an Asian American/Pacific Islander working group, etc. Individuals in the working groups should either currently live with a bleeding disorder or are the parent/guardian of a person with a blood disorder. They should live in different cities and states so their specific needs can be addressed and discussed with other community members. This will improve communication between groups and to NHF so they can better support these communities.

Interprofessional Practice

Within NHF, there are internal and external priority action groups. These groups focus on different bleeding disorders, different provider teams (social workers, nursing, and physical therapy), the chapter network, and the HTC network. These meetings involve NHF staff, providers, consumers, and persons from industry. They work together to improve access to treatment and resources. NHF also works in conjunction with the American Society of Hematology (ASH), the International Society on Thrombosis and Hemostasis (ISTH), the World Federation of Hemophilia (WFH), the Hemophilia Federation (HFA), the Centers for Disease Control (CDC), and the American Thrombosis and Hemostasis Network (ATHN). These organizations exist to support patients, clinicians, and other health care professionals. Unfortunately, bleeding disorders are less well known compared to heart disease or breast cancer, for example. Therefore, there is less opportunity to learn from other organizations and their successes. In order to address this, NHF should present on their findings and successes in addressing health equity in the bleeding disorders community at other health equity conferences. This will increase awareness among other groups and strengthen interpersonal relationships by presenting NHF as an important player in this discussion.

Systems Thinking

Systems thinking is used by NHF when assessing how their interventions affect individuals and the bleeding disorders community. When interventions are created to aid community members, NHF also tries to consider how these interventions will affect family members or how it might affect the economic stability of members. However, one facet of systems thinking that could be expanded on is the influence of organization (school, work, etc.) in the lives of consumers. There are important considerations for children with bleeding disorders while at school and for adults at work. In order to improve the systems thinking approach, NHF should focus on providing support for individuals at this level because it impacts their overall health and wellness.

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

Elflein, J. (2021). Von Willebrand disease in United States by age 2020. Statista. Retrieved from https://www.statista.com/statistics/495706/percentage-of-people-with-von-willebrand-disease-in-us-by-age/

Elflein, J. (2021). Von Willebrand Patient Share by Ethnicity U.S. 2021. Statista. Retrieved from https://www.statista.com/statistics/948117/von-willebrand-disease-patient-distribution-by-ethnicity/

FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: A systematic review. BMC Medical Ethics, 18(1), 19. https://doi.org/10.1186/s12910-017-0179-8

Health Resources and Services Administration (HRSA). (2022). 340B Drug Pricing Program. U.S. Health Resources & Services Administration. Retrieved 2022, from https://www.hrsa.gov/opa/index.html

Lyles, C. R., Wachter, R. M., & Sarkar, U. (2021). Focusing on digital health equity. JAMA, 326(18), 1795-1796. doi:10.1001/jama.2021.18459

National Hemophilia Foundation. (2019). The Basics of Bleeding Disorders. Steps for Living: Education for All Life Stages. Retrieved from https://stepsforliving.hemophilia.org/

National Hemophilia Foundation. (2022). Health Equity Working Group. National Hemophilia Foundation. Retrieved from https://www.hemophilia.org/educational-programs/outreach/health-equity-working-group

National Hemophilia Foundation. (2021). Research. National Hemophilia Foundation. Retrieved from https://www.hemophilia.org/research

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