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.

Page updated

Google Sites

Report abuse