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PCORnet’s Public Workshop on Building Trustworthiness: It’s Time to Walk the Talk

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Scores of people — patients, researchers, and many other stakeholders — participated in the Building Trustworthiness in PCORnet meeting in Washington, DC, on March 28 and 29 to work on advancing a new model of research that is rooted in trust, honesty, and true partnerships between researchers and patients . Here are some key takeaways from that event.
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PCORI Board Approves $12.5 Million for PCORnet Patient-Powered 
Research Network Demonstration Projects

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WASHINGTON, DC (Mar. 22, 2016) — The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved $12.5 million for five Patient-Powered Research Network (PPRN) demonstration projects.

Additionally, the Board authorized providing up to $22 million to study ways to improve treatment of chronic low back pain, a leading cause of disability and one of the most frequent reasons adults seek medical care.
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Parent Champion Perspective on Engagement in Research

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Douglas Lunsford, a champion of obesity research, describes what led him to become an investigator for the PCORnet Antibiotic Use in Infants and Obesity Study in a PCORI blog.  In an accompanying video,  Mr. Lunsford’s states, “The more we as people interact with the medical community and the more they interact with us, it eliminates a … Continue reading Parent Champion Perspective on Engagement in Research

People-Powered Research Begins with Trust

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People-powered research is what’s needed to drive changes in research and health care. If people engage in health research the same way that they engage with other industries, with the same passion that they make decisions about books, music, and cars, then people themselves will power research forward.
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PCORI Announces PCORnet Partner Networks’ Pledge to Facilitate Patients’ Access to Their EHR Data

WASHINGTON, DC (Feb. 25, 2015) — Today at the Precision Medicine Initiative Summit at the White House, Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), announced an initiative to enable individuals to access data in their electronic health records (EHRs) and share it for research that could improve care for their conditions.
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PCORI Board Approves $70 Million for New Patient-Centered Research Studies

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WASHINGTON, DC (Jan. 26, 2016) — The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved $70 million for nine new patient-centered research projects focused on conditions ranging from ductal carcinoma in situ (DCIS), a type of very early-stage, localized breast cancer, to diabetes, chronic lung disease and migraines. With these latest awards, PCORI has now approved or awarded more than $1.2 billion in research funding to date.
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PCORnet: Achievements and Plans on the Road to Transforming Health Research

Two years ago, PCORI began an ambitious journey to find a faster, less expensive, more powerful way to conduct comparative clinical effectiveness research that addresses the real-world needs of patients and those who care for them. Link to the full blog post.
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PCORnet Names Chairs of Data, Engagement, and Research Committees

The PCORnet Council, the main governing body of PCORnet, the National Patient-Centered Clinical Research Network, has approved three individuals to serve as the first chairs of the network’s new Data, Engagement, and Research Committees.
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Researchers Say Their Path To Better Health Starts With Patients’ Input

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In an article in Kaiser Health News, Guy Gugliotta discusses how PCORI as an independent organization charged with bringing health care professionals and patients together in cooperative research ventures to find the best treatments for ailments ranging from diabetes to depression, and last month opened the second phase of a program (PCORnet) to create research networks covering specific diseases and involving millions of patients across the country.
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Spotlight on a Patient-Powered Research Network

In its September newsletter, the patient advocacy group Facing Our Risk of Cancer Empowered (FORCE) highlights its participation in ABOUT (American BRCA* Outcomes and Utilization of Testing). ABOUT is one of the Patient-Powered Research Networks (PPRNs) that are an important part of PCORnet, the National Patient-Centered Clinical Research Network, which PCORI is developing.
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