Background: With a plethora of emerging therapies and medical advances from leading pharmaceutical companies, this is an exciting time for those in the bleeding disorders community. For stakeholders of the bleeding disorders community, having access to knowledge of and opportunities to participate in patient-centered outcome research (PCOR) and comparative effectiveness research (CER) is critical to patients making decisions regarding the use of these advances. In the bleeding disorders community, there is a gap in PCOR and CER training for patients, caregivers, providers, researchers, and other stakeholders and currently no entity seeking to fill this gap and offer the community opportunities to participate in PCOR or CER.
Proposed Solution to the Problem: HFA will train stakeholders in the bleeding disorders community using a blended learning method, which includes in-person trainings, online education, and print resources. PCOR/CER trainings will be imbedded into existing HFA programming and meetings to maximize meaningful participation and program reach. Four key areas of focus for training will include:
- What is PCOR and CER?
- Why are PCOR and CER important to patients, caregivers, healthcare providers, and other stakeholders?
- How do I become a knowledgeable participant in PCOR and CER?
- How do I use PCOR and CER results to improve health outcomes?
Objectives: This project aims to provide increased opportunities for our community to influence, collaborate on, and participate in all phases of PCOR and CER. Our long-term objective is to accelerate the paradigm shift to patient-centered care, treatment, and research by training our stakeholder groups in PCOR and CER. This project is aimed at developing capable and confident lifelong research participants and researchers in bleeding disorders.
Activities: A series of in-person trainings at local and national meetings, online education through webinars and learning management systems, and print resources through quarter newsletter.
Outcomes & Outputs (projected): HFA expects PRIDE to engage (1) at least 1,000 patient and caregiver participants that will include a diverse group of participants (men, women, non-English speakers, underserved community members, and others) and (2) at least 50 healthcare providers, pharmaceutical, and insurance participants in PCOR and CER training. This initial engagement is intended to create a network of PCOR and CER trained community stakeholders. Once trained, HFA expects PRIDE participants will (1) encourage others to participate in the training, (2) engage directly with PCOR and CER-researchers to initiate and participate in PCOR and CER projects, and (3) utilize PCOR and CER results to make informed decisions about their healthcare and advance overall patient care.
Patient and Stakeholder Engagement Plan: Patients, caregivers, providers, researchers, and stakeholders will be actively consulted during the project’s duration through focus groups and surveys to ensure project objectives are met.
Project Collaborators: HFA’s 43 member organizations and professional researchers with experience in PCOR and CER.