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Patient-centered outcomes research is research that “helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options.”

— Patient Centered Outcomes Research Institute (PCORI)

Using the data from the CHOICE Project as a springboard, HFA has initiated several research projects so far this year. We will undertake each research project with the goal of using the results to improve the lives of our community, including health outcomes and personal advocacy capabilities, among other advancements.

CHOICE Project

The CHOICE Project was the first of its kind in which the Centers for Disease Control and Prevention (CDC) asked patients, not their providers, to report directly on their health outcomes. Data collection on the CHOICE survey closed on July 31, 2015. Since then HFA, together with the CDC, has organized that data into a format that is ready for analysis. HFA will ask questions of the information collected with the purpose of improving the lives of our community members. As HFA completes the analysis of the CHOICE Project data in the months to come, the results will be made available to the community. In addition, HFA will develop abstracts, posters, and manuscripts for publication in order to make the CHOICE Project results available to a large, global audience that can learn from our work and apply it to their efforts to improve the lives of people with bleeding disorders.

How Has This Impacted the Community

The Care Access Working Group (CAWG) was formed as a result of the CHOICE Project. CAWG has developed two resources for the bleeding disorders community that were identified as needs:

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Emergency Family Card

We also initiated an additional survey to dig deeper into the issues of women’s bleeding. The Share Your Story survey has been used to address issues of inadequate treatment and access for those females with bleeding disorders and has helped HFA increased advocacy and programming through our Blood Sisterhood program. The CHOICE Project also led to the formation of Project CALLS (Creating Alternatives to Limiting and Lacking Services). Project CALLS collects stories from the bleeding disorders community across the country to collate the data, identify trends, and use the information to build cases for changes in insurance issues. As a participant you will speak privately with a trained member of the HFA staff about your insurance issues.

PEER Portal

HFA has received a grant from the Robert Wood Johnson Foundation through Genetic Alliance for a PEER (Platform for Engaging Everyone Responsibly) Portal. A Peer Portal is a registry system used to collect privacy-assured health information from patients. It enables participants and their caregivers to share clinical information and biological specimens under access-permission rules defined by the participants themselves. You control the information you want to share and with whom you share it. The White House Champions of Change for Precision Medicine honored PEER. PEER is the platform for PCORnet, Food & Drug Administration (FDA), and Robert Wood Johnson Foundation projects. More information on HFA’s PEER Portal is coming soon.

 

Assisting and Advocating for the Bleeding Disorders Community