Hemophilia Federation Receives $250,000 Research Award for PRIDE Project

Hemophilia Federation Receives $250,000 Research Award for PRIDE Project

The Hemophilia Federation of America (HFA) has been awarded a $250,000 research grant through the Eugene Washington PCORI Engagement Awards Program to support the HFA’s PRIDE Project through training and education of bleeding disorder community stakeholders, including the hemophilia community.

The Awards Program is an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The nonprofit PCORI was established to fund research designed to help patients and caregivers make better informed decisions about healthcare and treatment choice.

The award is intended to bring more people, businesses, and agencies with an interest in bleeding disorders into the research process, and to support projects that build stronger, more empowered communities.

Leading the project at HFA will be Wendy E. Owens, director of research. The PRIDE (Patient-Centered Research for Innovation, Development and Education) Project will use a mixed learning method that combines in-person training, online education, and print resources to train the bleeding disorder community in future patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) initiatives.

The PRIDE Project will provide knowledge, tools, and connections to facilitate discussion and planning among researchers and others for upcoming PCOR and CER initiatives around four key areas:

  1. What are PCOR and CER?
  2. Why are PCOR and CER important to patients, caregivers and healthcare providers, among others?
  3. How do I become a knowledgeable participant in PCOR and CER?
  4. How do I use PCOR and CER results to improve health outcomes?

The HFA expects that training in these four areas will lead to more educated and informed decision-making regarding which research areas should be further explored to achieve the most beneficial and relevant results to improve health outcomes in the bleeding disorders community.

A schedule of the PRIDE Project Webinars is available here.

“The PRIDE Project will be the catalyst for increasing PCOR and CER within the bleeding disorders community,” Owens said in a press release. “Patients and caregivers drive our research agenda and we want their voices heard by the larger research community, too.

“Our long-term objective is to accelerate the paradigm shift to patient-centered care, treatment, and research by training our stakeholders to participate in research in meaningful ways. PRIDE Project training will result in capable and confident lifelong PCOR and CER participants who have a positive impact on those with bleeding disorders,” she said.

The PRIDE Project was selected through a competitive review process in which applications were evaluated for their ability to meet PCORI’s engagement goals and program criteria.

By winning the award, the PRIDE Project joints a portfolio of initiatives that PCORI has funded in the past (see here).

“This project was selected for PCORI Engagement Award funding for its commitment to improving the capacity for patients and other stakeholders to engage in patient-centered research and its potential to increase the usefulness and trustworthiness of the research PCORI funds,” said Jean Slutsky, PCORI’s chief engagement and dissemination officer. “We look forward to following the project’s progress and working with HFA to share the results.”

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