Appendix A: Graduate Project Proposal

Graduate Project Proposal

MPH@Baylor Program

Marissa Melton

Winter 2022

Organization

Name, location/address, and website URL

National Hemophilia Foundation

7 Pennsylvania Plaza #1204, New York, NY 10001

https://www.hemophilia.org/

Mission statement/vision

The National Hemophilia Foundation (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.

Service population and demographics

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).

Primary health issue(s) and health-related needs

The primary health issue affecting the VWD community is lack of equitable care and information. Unfortunately, even though VWD is the most common inherited bleeding disorder, awareness among health care professionals is low (Sidonio, Zia, & Fallaiz, 2020). It is estimated that 35,000-387,000 patients may have symptomatic, undiagnosed VWD in the United States (Sidonio, Zia, & Fallaiz, 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. Therefore, the health-related needs that will be addressed are awareness of VWD and access to education with a focus on ensuring health equity for those affected by or living with VWD.

Impacting social determinants and broad factors

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.

Descriptions of current and primary programs/services

NHF currently offers educational programs for different blood disorders, including VWD. The education series provides general information about VWD and is aimed at correcting misconceptions and increasing knowledge about VWD. 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. 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).

Accomplishments and strategic plans

NHF’s Division of Health Equity, Diversity, and Inclusion (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. Currently, HEDI is surveying the landscape and learning about gaps in access to care. Qualitative data is being collected through discussion with stakeholders who have lived experiences. Quantitative data is being pulled from existing data to extract other challenges that prevent equitable access to care. The division will use this data to ensure NHF is participating in other collaboratives and coalitions that are aiding the blood disorders community. HEDI looks to address health system barriers and community challenges that they are not currently aware of. This will help NHF overall to assist the blood disorders community’s access to care and lessen the burden of disease.

Existing or potential community-based partners

NHF is currently aligned with the Hemophilia Federation (HFA), the Centers for Disease Control (CDC), and the American Thrombosis and Hemostasis Network (ATHN). There are currently fifty-two chapters of NHF that service states and communities throughout the U.S. NHF focuses on the importance of community member engagement and value input from individuals living with a bleeding disorder or their family members, identified as “subject matter experts.” Additional existing organizations are the American Society of Hematology (ASH), the International Society on Thrombosis and Hemostasis (ISTH), and the World Federation of Hemophilia (WFH) who all exist to support patients, clinicians, and other health care professionals in the treatment of blood disorders. Other NHF partners include various industry partners, policy partners, and coalitions focused on rare disease.

Organization as a public health agency/potential internship site

NHF is an organization dedicated to improving the lives of individuals living with blood disorders. This would serve as an excellent internship site as they work directly with the blood disorders community. Specifically, HEDI aims to identify and improve barriers to equitable access to care and resources for this community.

Agency supervisor’s name, title, credentials/experience

Dr. Keri Norris, PhD, JM, MPH, MCHES is the Vice President of Health Equity, Diversity, and Inclusion at NHF. She has been with the organization since March 2021, working to improve health disparities within the blood disorders community. She is also a lecturer of public health with Baylor University.

Rationale

This organization aligns with my career goals as is focuses on health equity and improving access to care across the U.S. Thus far in my career, I’ve only worked in for profit health care. I am excited for this opportunity to work with a nonprofit and learn about how these types of organizations impact lives.

Background Information

Primary health issue/problem

The primary health issue affecting the 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, Zia, & Fallaiz, 2020). Furthermore, awareness of VWD is low among health care professionals (Sidonio, Zia, & Fallaiz, 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 awareness of the disorder so they can refer to providers who can care for these individuals. NHF support individuals living with VWD, their families, and healthcare professionals. Therefore, addressing the primary health issue of lack of access to equitable care and information will support the population NHF serves. Increasing awareness and available education on VWD, its symptoms, and recommended treatment would improve health outcomes for individuals with VWD.

Primary health-related needs

The health-related needs that contribute to a lack of equitable care and information is low awareness of the disorder, limited awareness of the recommended diagnostic procedures and treatments, and equitable access to this information. There are also health equity issues within the VWD community that negatively affect health outcomes. This should be considered when addressing the needs of the population. Limited awareness of the disorder leads to under-diagnosis and misdiagnosis of the disorder. In some cases, this has resulted in young women having complete hysterectomies in their 20s or 30s because their OBGYN could not diagnose the cause of their heavy menstrual bleeding. This is a life altering procedure that could have been avoided with consulting a hematologist and receiving treatment for VWD. Awareness of the disorder needs to be increased so that the burden of care does not only fall on the person living with VWD but is shared by their health care providers. Furthermore, awareness needs to be improved on the recommended diagnostic procedures and treatments for VWD. The guidelines for diagnosis (James, et al., 2021) and the management (Connell, et al., 2021) of VWD were updated in 2021. These guidelines should be followed to achieve streamlined diagnosis and proper treatment for the disorder. The improvement of awareness of VWD and the recommended guidelines should be addressed so that regardless of where the care is being received, there is a standard of care and treatment for all individuals with VWD.

Additionally, it is important to apply a health equity lens to addressing these health-related needs. VWD affects men and equally, however, women with bleeding disorders have been underrecognized and underdiagnosed (Weyand & Paul, 2020). Due to the universal stigmatization of periods and a lack of comfort discussing the issue, fewer women are seeking care, leading to fewer health care providers addressing the issue, and ultimately fewer women receiving quality care (Weyand & Paul, 2020). Health equity expands farther than just gender and race. Therefore, it is important to consider other social determinants of health such as socioeconomic status and transportation when addressing the health-related needs of the VWD community. This health equity lens needs to be applied so that the increased awareness of VWD and increased awareness of diagnostic procedures and treatments can result in a decreased burden of disease on these individuals and their families.

Public Health “best practices” for addressing the health-related needs

In public health, the best practice for addressing low awareness of a health issue is to improve education for both patients and healthcare providers (Noone, et al., 2019). This involves making accurate information more readily available to the groups through increasing health care delivery. It is NHF’s mission to provide education, research, and support to individuals with bleeding disorders. Therefore, providing updated and enhanced education on VWD will increase awareness, leading to better health practices and better health outcomes for individuals with VWD. Furthermore, improving access to the recommended guidelines for the diagnosis and treatment of VWD will also help to enhance awareness and uses the best practice of improving education.

In public health, the best practice for addressing health equity is to address the social determinants of health when considering interventions (Adler, et al., 2016). The social determinants of health do not occur at random and are the result of the intersectionality of social identities and positions (Brewer et al., 2020). 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). Digital access and skills are foundational social determinants of health as social services and health care information is moving online. “Addressing the SDOH through innovative digital technologies is a promising channel to overcome health inequities experienced by racial and ethnic minorities and other under resourced populations, including older adults, rural residents, and the economically disadvantaged” (Brewer et al., 2020). In conclusion, it is important to address the social determinants of health to achieve health equity in the VWD community. This will be addressed through both digital access and traditional methods of information dissemination.

Summary

VWD is the most common inheritable bleeding disorder but is often underdiagnosed or misdiagnosed, especially in women. Therefore, it is important to increase awareness of the disorder and the recommended diagnostic procedures and treatments. Increasing education surrounding the disorder and recommended treatments will improve the quality of life of the individuals living with the disorder. Furthermore, it is important to consider health equity and the social determinants of health when promoting awareness of the disease and its treatments. Addressing the lack of awareness and education on VWD through digital platforms is important to ensuring that the information disseminated is widespread and standard. This will improve the quality of care that individuals receive and help in improving their understanding of their disease so they can better advocate for themselves.

Project Description and Outcomes

Project #1

Title

VWD Toolkit Updates, Modifications, and Recommendations based on 2021 Guidelines

Primary project focus/purpose

The purpose of this project is to review and update NHF resources in the “VWD Toolkit.” This toolkit has resources on the diagnosis and treatment of VWD. This toolkit can be used to educate individuals living with VWD and their family members or friends. This toolkit can also be used to give concise information about the disorder and standard treatments to other healthcare providers. In 2021, the guidelines for the diagnosis (James, et al., 2021) and the management (Connell, et al., 2021) of VWD were updated. These evidence-based guidelines were recommended to support patients, clinicians, and other health care professionals in their decisions about the diagnosis and management of VWD. The primary focus of this project is to update the VWD toolkit to ensure it aligns with 2021 guidelines.

Descriptions of work plan/general tasks

For this project, I would begin by conducting a literature review on VWD, current interventions, and barriers affecting access to care. The intended deliverables will be an annotated bibliography and literature review that will be submitted to the internship supervisor. While waiting to receive feedback on the deliverables, I will read the 2021 guidelines for the diagnosis and management of VWD. Then I would review the current NHF resources in the VWD toolkit. I would work to ensure the resources do not conflict with VWD guidelines and are updated to reflect the current information. I will also use a health equity lens and the social determinants of health framework to make further recommendations. Then, I will review other resources, called Better You Know, which were created for individuals who have not been diagnosed, to determine if they would be a good addition to the toolkit. Additional research that will be included on existing VWD resources for males (as requested by supervisor). Once all updates and recommendations are complete, an example toolkit will be created and presented to the internship supervisor.

Expected outcomes

The expected outcomes of this project include:

· Thorough review of 2021 VWD guidelines and recommendations.

· Development of an updated VWD toolkit applying a health equity lens and using current guidelines.

· Development of health education materials to supplement the toolkit.

· Comprehensive review of VWD research with annotated bibliography and literature review submitted to internship supervisor.

Benefits to organization and service population

NHF is dedicated to serving the blood disorders community and preventing complications of these disorders through research, education, and advocacy. This project aims to increase awareness and education of VWD by ensuring this toolkit is updated with current information. This toolkit is important to the blood disorders community because it can serve as a safety tool for individuals living with VWD. Parents can show this to educate school nurses on their child’s bleeding disorder or it can be presented to a woman’s OBGYN when discussing plans for safe childbirth with a bleeding disorder. The toolkit can also be used to educate someone who has been experiencing abnormal bleeding and is beginning their diagnosis journey. The VWD toolkit support’s NHF’s mission by improving education surrounding VWD to lessen the burden on those living with the disorder as it provides resources and other important information.

Project #2

Title

VWD Toolkit Promotional Plan

Primary project focus/purpose

The purpose of this project is to develop a one-year promotional plan for the VWD toolkit. Once the toolkit is updated and finalized, it will need to be promoted to the VWD and NHF communities. This project will also focus on providing a message to the community, NHF chapters, and hemophilia treatments centers (HCT’s) explaining what the toolkit is.

Descriptions of work plan/general tasks

For this project, I will begin by discussing examples of past successful promotional plans with NHF staff members. Then I will develop a one-year promotional plan on how NHF will promote the VWD toolkit to the community. Additionally, I will create tailored letters describing what the toolkit is and how it can be used. One message will be written to the VWD community, another to NHF chapters, and the third will be addressed to HTC’s. Once the promotional plan and tailored letters are approved, a final presentation will be created. This presentation will have the final VWD toolkit, samples of the tailored letters, and will explain the promotional plan. I will present this to NHF staff members.

Expected outcomes

The expected outcomes of this project include:

· Facilitation of strategic planning sessions to discuss most efficient and effective approaches used to develop and implement promotional plans.

· Development of a one-year promotional plan.

· Creation of three tailored letters addressed to various population groups in the community, NHF chapters, and HCT’s explaining the purpose of the toolkit.

· Creation of VWD toolkit and promotional plan presentation for NHF staff

Benefits to organization and service population

NHF is a national organization and has chapters in 48 states, all focused on improving the lives of people living with blood disorders. The benefits of this project would include improved access to the VWD toolkit and its resources/information. As this information and toolkit would become more widely available, awareness and education will increase. This will also improve education surrounding the diagnosis and treatment of VWD. Patients will have the most updated and easy to understand information on their disorder, so they will be able to better advocate for themselves. It is part of NHF’s mission to provide education on bleeding disorders and this project would improve the educational content and access to the toolkit.

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 will be completed. This will provide a review of the effects of structural bias, social inequities, and racism on the bleeding disorders community and the care they receive. This will go into detail on the disproportionate effects on women and communities of color. The annotated bibliography and literature review will be used to create a thorough understanding of the effects of these determinants on individuals with NHF. This knowledge and understanding of these barriers will then be used to apply a health equity lens to review the VWD toolkit to ensure the content is equitable.

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 will 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 will be considered. It is important that the information not only be communicated to patients, families, and health care providers but that it is understood by all. The information should be tailored to consider all comprehension levels and by all audiences and sectors. Furthermore, a one one-year promotional plan will be developed. The toolkit will be promoted to the NHF and VWD communities and will be promoted using different communication strategies.

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 will 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, a paper will be written summarizing the project. This will cover the research, toolkit updates, and overview of the promotional plan. A presentation will also be created and presented to NHF staff at the end of the internship experience. This presentation will include 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 will 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 will be created that researches the effects of structural bias, social inequities, and racism and how those affect health education and promotion within the VWD community. This information will also be 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 will 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 will be important to involve input from the VWD community, different departments within NHF, and other stakeholders. Meetings will be held with different departments within NHF to ensure toolkit content is correct and the promotional plan is feasible with NHF resources. Additionally, meetings will be held with individuals who have 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 will 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.

Professional Strengths and Expected Growth

For this internship, I can provide many strengths to the organization. I have experience working with patients with chronic disease and understand how frustrating it can be. Therefore, I can provide an empathetic understanding to their situation. I also have experience working in underrepresented communities and will apply that knowledge and experience to ensure the toolkit remains culturally competent and can be used by the VWD community and supporting groups. I have the confidence to foster open and effective communication with NHF staff and the target community to ensure the toolkit content is aligned and meets project goals. I want to make sure that all voices and perspectives are heard on the updated toolkit and promotional plan so that it can have a widespread beneficial effect on the burden of disease. However, I lack experience in working specifically with health equity. Therefore, I know it will be a challenge to assess the project with a health equity lens but I look forward to the challenge and creating my first public health related intervention.

References

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

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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

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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

Noone, D., Skouw‐Rasmussen, N., Lavin, M., van Galen, K. P., & Kadir, R. A. (2019). Barriers and challenges faced by women with congenital bleeding disorders in Europe: results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia, 25(3), 468-474.

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

Weyand, A. C., & James, P. D. (2021). Sexism in the management of bleeding disorders. Research and Practice in Thrombosis and Haemostasis, 5(1), 51-54.