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Mental Health in Sexual, Gender, and Racial Minorities: A Q&A with Bowen Chung

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Mental health disorders can impact anyone, but unfortunately, too often minority communities struggle even more. The LGBTQ community is almost three times more likely than others to experience a mental health condition, such as major depression or generalized anxiety disorder. Racial and ethnic minorities are also at higher risk, and studies have revealed these communities … Continue reading Mental Health in Sexual, Gender, and Racial Minorities: A Q&A with Bowen Chung

PCORnet Partner Network Launches Creative Strategy to Reduce Homelessness in Chicago

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In the winter months, when freezing temperatures overtake Chicago, people without homes cradle themselves in makeshift tents to shelter from Chicago’s infamous frigid wind. They are young and old, educated and uneducated, men, women, and children. And they are not alone—in fact, on an average night in 2017, nearly 7,000 people could be found on … Continue reading PCORnet Partner Network Launches Creative Strategy to Reduce Homelessness in Chicago

PCORI Board Approves Research to Promote Partnerships Between PCORnet and Other Organizations

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The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors recently approved more than $20 million for studies that will use PCORnet, the National Patient-Centered Clinical Research Network, to test ways to improve care for people with arthritis, blood pressure, depression and inflammatory bowel disease. PCORnet is PCORI’s initiative to improve the nation’s capacity to conduct … Continue reading PCORI Board Approves Research to Promote Partnerships Between PCORnet and Other Organizations

People-Centered Research Foundation Names Richard Turman Chief Operating Officer

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The People-Centered Research Foundation (PCRF) announced that Richard Turman, MPP, will be joining the organization as chief operating officer. Mr. Turman currently serves as the deputy director of the U.S. Food and Drug Administration (FDA) Center for Tobacco Products. At the PCRF, he joins a team of national leaders in clinical research who established the nonprofit organization to accelerate people-driven … Continue reading People-Centered Research Foundation Names Richard Turman Chief Operating Officer

Empowering the Digital Patient: How Three PCORnet Partner Networks Answered the Call from Patients and Caregivers Who Want to Share Their Own Health Data

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In the past few years, Kiely Law has noticed a common frustration in the autism community. Families and adults with autism want to know why it is so hard to share their medical records with the research registry she co-founded, the Interactive Autism Network. As research director of the Interactive Autism Network, a partner network … Continue reading Empowering the Digital Patient: How Three PCORnet Partner Networks Answered the Call from Patients and Caregivers Who Want to Share Their Own Health Data

PCORnet in the News

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PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, continues to advance patient-centered research. Several manuscripts written by PCORnet colleagues have recently been published in prominent journals: The Mid-South Clinical Data Research Network wrote a paper published in the March 2018 edition of BMC Obesity. This paper discusses results of a survey on patient … Continue reading PCORnet in the News

AMIA’s 2018 Informatics Summit Is Coming; Mark Your Calendar Now For These PCORnet-Led Sessions

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The American Medical Informatics Association (AMIA) is set to hold its annual Informatics Summit on March 12-15 in San Francisco, CA. The summit is known across the industry as a showcase of leading perspectives in translational, clinical research, implementation, and data science. PCORnet will have a significant presence at the event—including PCORnet Data Committee member … Continue reading AMIA’s 2018 Informatics Summit Is Coming; Mark Your Calendar Now For These PCORnet-Led Sessions

Researchers Created an Infrastructure that Allows for Linkage of PCORnet to Other Distributed Networks to Solve for Missing Data; Here’s What They Learned (Part 2)

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Earlier this week, we published part one of this two-part series in which we highlighted how the combined use of claims data and electronic health record data can drive better research outcomes. However, we also noted that combining these two datasets comes with inherent challenges due to differences in coding and categorization of records. In … Continue reading Researchers Created an Infrastructure that Allows for Linkage of PCORnet to Other Distributed Networks to Solve for Missing Data; Here’s What They Learned (Part 2)

When Patients Partner with Researchers: Bill Larsen on the ADAPTABLE Study

Partnerships between patients and researchers hold the promise to improve clinical research and health outcomes. But what does patient engagement mean and what does it involve? To gain a better understanding of the patient and researcher relationship, we talked with a patient representative, Bill Larsen, who partners with researchers in the ADAPTABLE Study. ADAPTABLE is … Continue reading When Patients Partner with Researchers: Bill Larsen on the ADAPTABLE Study

Researchers Created an Infrastructure that Allows for Linkage of PCORnet to Other Distributed Networks to Solve for Missing Data; Here’s What They Learned (Part 1)

Imagine that you are a researcher trying to identify the number of people receiving a certain treatment for a medical condition. As you explore the available data, you quickly discover that there are many data sources to choose from. The two most commonly used types of data are electronic health record data and claims data. … Continue reading Researchers Created an Infrastructure that Allows for Linkage of PCORnet to Other Distributed Networks to Solve for Missing Data; Here’s What They Learned (Part 1)