Activities, Methods, and Outcomes

The internship project was completed in a virtual setting. The first portion of the internship focused on researching about which social determinants of health affect the VWD community. This research was then used to inform recommendations to the VWD toolkit. The second portion of the internship focused on creating a one-year promotion plan to disseminate the toolkit. Additional internship deliverables included an annotated bibliography and literature review on the impacting determinants of health. The project was summarized in an executive summary and presentation given to NHF staff. These projects were completed in 277.50 hours over a 10-week period from April 2022-June 2022. Weekly meetings were held with the site supervisor to discuss deliverables and to review completed work. All deliverables are included in the appendix of this e-folio.

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 D) and literature review (See Appendix E). 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 F). Examples of toolkit resources and recommendations can be found in Appendix G. Objective 2b was the creation of a promotion plan for dissemination of the toolkit (See Appendix H). 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 I). 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 J). 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 Keri Norris. 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 Keri Norris. These perspectives were important to ensuring information will be equitably understood by the VWD community and will be equitably disseminated.