Background: Maternal alloimmunization is a rare condition in which mothers develop antibodies which attack foreign red blood cells. When pregnant, these antibodies can destroy the fetus’ red blood cells, a disease called hemolytic disease of the fetus and newborn (HDFN). The Allo Hope Foundation (AHF) is dedicated to preventing fetal harm or death resulting from alloimmunization/HDFN. AHF is staffed by patients and maintains a network of alloimmunized patients and associated providers, researchers, and advocates. AHF has become aware of a lack of consistent, quality care for alloimmunization and the significant psychosocial burden assumed by women who bear the responsibility of being their baby’s advocate during high-risk pregnancy requiring intensive monitoring and invasive procedures. There is an absence of published patient-centered outcomes research (PCOR) for this condition. A PCOR plan is a critical component of improving fetal/infant outcomes and better serving the needs of alloimmunized mothers.
Proposed Solution to the Problem: This project seeks to address the needs of this community by isolating facilitators and barriers to engagement and health topics of importance, developing an informed research plan rooted in patient needs, and planning sustained stakeholder engagement in PCOR/comparative clinical effectiveness research (CER).
Objectives: Aims include:
- Reach and host cross-stakeholder education sessions on the components and benefits of PCOR/CER;
- Host cross-stakeholder listening sessions to identify facilitators and barriers to engagement and health topics of importance, with emphasis on maternal mental health, resulting in a whitepaper;
- Use whitepaper and learnings from PCOR/CER education sessions to generate a research plan and logic model;
- Evaluate engagement efforts amongst stakeholders through a follow-up survey resulting in a PCOR/CER engagement guide for patient advocacy groups with emphasis on psychosocial impact on patients, and prepare a dissemination report detailing the reach of the project’s deliverables.
Activities: The activities to accomplish these aims include listening sessions, generation of a whitepaper reviewing learned facilitators/barriers to engagement and health topics of importance, a roundtable session to draft a research plan, and stakeholder follow-up to assess engagement and determine interest in future efforts.
Projected outcomes and outputs:
- Short-term outcomes during the project period include: all project deliverables (whitepaper, logic model, research plan, PCOR/CER engagement guide, dissemination report); an additional output is the newly educated stakeholders who have participated in the project’s efforts.
- Medium-term outcomes (0-2 years post-project period) include: sustained stakeholder engagement as well as the institutionalization of the research plan.
- Long-term outcomes (3+ years post-project period) include: AHF manages patient-driven research initiatives with a growing team of stakeholders. Such initiatives will result in publication, media engagement, and advocacy, leading to more consistent, quality care and mental health resources for patients navigating alloimmunization/HDFN.
Patient and Stakeholder Engagement Plan: This project will engage at least four stakeholder groups: patients, clinicians, industry, and researchers. Stakeholders will be engaged through personal outreach, social media, newsletters, and through outreach by existing stakeholders. Stakeholders will be invited to participate in the listening sessions which will be available at multiple times. The AHF team has expertise in research and education and will employ this in shaping session content to best promote participation. This project is led by AHF with support from its Patient and Medical Advisory Boards.