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Drawing on Mental Health “Experts-by-Experience”

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Two leaders, Drs. Andrew Nierenberg and Roberta Tovey, of PCORnet’s Patient-Powered Research Network (PPRN), MoodNetwork, share their thoughts and excitement in a PCORI Guest Blog about the purpose, history, and impact of MoodNetwork, which is committed to changing how mood disorders are understood and treated in our society.
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PCORnet Leaders Participate in Policy Roundtable to Advance the Use of Real-World Evidence

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On May 25th 2016, PCORnet leaders Adrian Hernandez and Russell Rothman were invited to participate in a Bipartisan Policy Center roundtable focused on advancing the generation and use of real-world evidence. The roundtable welcomed thought leaders from across industry and academia, including Amgen, Pfizer, Robert Wood Johnson Medical Group, and Duke, Columbia, and Yale Universities. Information generated from the roundtable and other activities, including interviews will multiple other members of PCORnet, will inform a final set of policy recommendations to be released by the Bipartisan Policy Center in late June.
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Placing Arthritis Research in Patients’ Hands

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To mark this Arthritis Awareness Month, Ben Nowell and Kelly Clayton share their thoughts with PCORI about the Arthritis Partnership with Comparative Effectiveness Researchers (nicknamed ArthritisPower, or AR-PoWER). The ArthritisPower partnership is one of the Patient-Powered Research Networks that make up PCORnet. Read this PCORI Guest Blog to learn more about a patient-led, patient-centered research registry … Continue reading Placing Arthritis Research in Patients’ Hands

PCORnet Announces Enrollment of First Participant in ADAPTABLE Aspirin Study

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“PCORnet is shifting the research paradigm through studies like ADAPTABLE by introducing a new genre of patient-centered research where patients are engaged to improve the science of clinical trial design,” said Adrian F. Hernandez, MD, MHS, director of outcomes and health services research at the Duke Clinical Research Institute (DCRI) and PCORnet’s Coordinating Center Co-Principal Investigator.
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How Parents, Patients, and Researchers Help Define the Future of Autism Research

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In 2015, the Interactive Autism Network (IAN) became one of the Patient Powered Research Networks (PPRNs) that make up PCORnet. Established by the Kennedy Krieger Institute in 2006 to foster communication and trust between the autism community and researchers, (IAN) aims to improve understanding of the causes of, and discover treatments for, this complicated disorder.
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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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