Project Summary

Background: Hypertensive disorders of pregnancy (HDPs) are leading causes of preventable maternal mortality and morbidity. EndPreeclampsia, Inc., is a nonprofit patient advocacy organization for HDPs with over 45,000 HDP current and former patients and their family as members. Our HDP patient community regularly asks questions that are not adequately addressed by the literature. Moreover, past efforts to identify research gaps in HDP literature have lacked a robust patient presence. Broader patient engagement using patient-centered comparative clinical effectiveness research (CER) approaches is needed to identify patient-centered research interests and how they want researchers to engage with them in studies.

Proposed Solution to the Problem: This proposed project will use patient-centered CER approaches to create the first patient-centered CER stakeholder advisory board on HDPs — the Alliance for Stakeholders of Preeclampsia to Inform Research Efforts (ASPIRE) — which will produce an actionable patient-centered CER agenda that identifies the priority research needs of the HDP patient and family community and a preferred practices plan that details how HDP patients want researchers to engage with them in patient-centered CER. The project team will also re-design EndPreeclampsia’s website to promote patient engagement and future patient-centered CER opportunities.

Objectives: The primary objectives of this project are to create patient-centered CER capacity through developing ASPIRE; a patient-centered CER agenda for the HDPs community; a preferred practices plan, which can be used by other patient organizations; and a re-designed patient-centered website.

Activities: The project team will create and sustain ASPIRE. They will train ASPIRE and a broader network of patients/family of patients (ambassadors) in patient-centered CER and conduct focus groups with ambassadors to provide input on the patient-centered CER agenda, preferred practices plan and website re-design. This information will be used during virtual strategic planning meetings to draft these products.

Projected Outcomes and Outputs:

Short-term outcomes during the project period include a patient-centered-CER-trained stakeholder advisory board (ASPIRE), a PCOR/CER agenda, a preferred practices plan for EndPreeclampsia and a re-designed website.

Medium-term outcomes (0-2 years post-project period) include an expanded ASPIRE membership, HDP research studies derived from the patient-centered CER agenda, researchers using the preferred practices plan to engage with our members in PCOR/CER studies and increased engagement with our website.

Long-term outcomes (3+ years post-project period) include other patient organizations using the preferred practices plan and patient-centered CER grant proposals derived from the patient-centered CER agenda.

Patient and Stakeholder Engagement Plan: HDPs stakeholders will be involved in each stage of the project. The project team will recruit and establish ASPIRE, which will be comprised of patients, families of patients, clinicians and researchers who will be trained in patient-centered CER and provide feedback on all project activities and outputs. They will also recruit a broader network of patients and families of patients who will be trained in patient-centered CER and inform the development of the project outputs via virtual focus groups, surveys and annual meetings. EndPreeclampsia’s extensive network of HDP stakeholders will be used to recruit and sustain stakeholder engagement and to disseminate project information and outputs to the stakeholder community.

Project Collaborators: Our collaborators include EndPreeclampsia, West Virginia University, University of Oklahoma Health Sciences Center, University of Iowa, Harvard School of Public Health and Brigham & Women’s Hospital.

Project Information

Kara Boeldt, BA
EndPreeclampsia, Inc.
$249,145

Key Dates

December 2025
2023

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Last updated: April 12, 2024