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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)

PCORnet Leaders Accept New Roles with Research and Data Committees

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The new year brought additional opportunities for network members to participate in PCORnet’s governing committees. The PCORnet Council is pleased to welcome several colleagues to new roles within the Research and Data Committees. Keith Marsolo will now serve as chair of PCORnet’s Data Committee. Marsolo is an associate professor in the division of Biomedical Informatics … Continue reading PCORnet Leaders Accept New Roles with Research and Data Committees

Promises Kept and New Resolutions: PCORnet’s Year in Review

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As we close the door on 2017 and begin a new year, it’s a good time to ask: has PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, remained steadfast in its mission? We pledged to enable people to make informed healthcare decisions by conducting clinical research that is better, faster, less expensive, and … Continue reading Promises Kept and New Resolutions: PCORnet’s Year in Review

Call for Abstracts: 2018 AcademyHealth Annual Research Meeting

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The 2018 AcademyHealth Annual Research Meeting (ARM) is a great opportunity to showcase PCORnet research. ARM, which will take place Jun. 24-26 in Seattle, Washington, is now accepting abstracts for panels on critical and emerging issues in health services research, policy roundtables, research panels, student posters, and abstract sessions. The abstract submission deadline is January … Continue reading Call for Abstracts: 2018 AcademyHealth Annual Research Meeting

Unlocking Patient and Caregiver Partnerships in Obesity Research: ObesityWeek 2017

As researchers dive into the details of obesity science, they are learning that, like most mechanisms of the human body, obesity is a result of myriad factors at play. In simpler terms, if the relationship between excess weight and the human body were to have a Facebook status, it would almost certainly be: “it’s complicated.” … Continue reading Unlocking Patient and Caregiver Partnerships in Obesity Research: ObesityWeek 2017