Recently I had my annual medical checkup with my Primary Care Physician (PCP). During my appointment my physician logged into her health system EHR and accessed my previous annual exam records and labs without any difficulty, but her EHR modern technology took a big step into a 1970s mimeograph machine time warp when we needed to access records outside of her PCP clinic. She asked me, “How did those x-rays turn out?” since she had no electronic report from radiology, a group that is part of her larger health system, but uses a different electronic record system. At the end of my appointment I left with a paper radiology order for my bone scan. EHR interoperability…we’re not there, yet!
Health system data networking and interoperability are high priority for the Office of the National Coordinator for Health Information Technology (ONCHIT). Previous Acumen blog posts have highlighted the ONCHIT vision for interoperability and plans to support patient interaction with personal health records. Stage 3 Meaningful Use (MU) will be designed to support related initiatives that are part of the ONCHIT 10-Year Vision Statement goals. In the next 6 years incentives will support technology that enables patients to generate and report personal data. Required system interoperability will enable data sharing among claims databases, clinical data registries, and other “data aggregators.” By 2024 HIT will support “a more connected health care system and active individual health management.” ONCHIT strategies will enhance patient-centered outcomes research through data aggregation.
PCORnet
To kickstart the ONCHIT 10 Year Vision, the Patient-Centered Outcomes Research Institute (PCORI) has launched the innovative National Patient-Centered Clinical Research Network, or PCORnet. This aggregated network leverages EHR interoperability to integrate clinical research into the fabric of daily patient care. Represented by a network of over 100 million patients, PCORnet will create a real-time observational data set with clinical EHR data and patient input. PCORnet comparative effectiveness research will work by ”combining the knowledge and insights of patients, caregivers, and researchers in a revolutionary network with carefully controlled access to rich sources of health data.”
PCORnet launched phase 1 by establishing the coordinating center, clinical data research networks (CDRNs), and patient-powered research networks (PPRNs). Eleven CDRNs and 18 PPRNs were announced in December 2013.
CDRN information from PCORnet: “The Clinical Data Research Networks (CDRNs) will develop the capacity to conduct randomized comparative effectiveness studies using data from clinical practice in a large, defined population. These established or newly developed networks involve two or more healthcare systems, with plans to function as integrated research network.”
The 11 CDRNs include:
- Accelerating Data Value Across a National Community Health Center Network (ADVANCE)
Oregon Community Health Information Network (OCHIN) - Chicago Area Patient Centered Outcomes Research Network (CAPriCORN)
The Chicago Community Trust - Greater Plains Collaborative (GPC)
University of Kansas Medical Center - Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) Network
Kaiser Foundation Research Institute - Louisiana CDRN (LACDRN)
Louisiana Public Health Institute (LPHI) - Mid-South CDRN
Vanderbilt University - National Pediatric Learning Health System (PEDSnet)
The Children’s Hospital of Philadelphia - New York City Clinical Data Research Network (NYC-CDRN)
Weill Medical College of Cornell University - Patient-oriented SCAlable National Network for Effectiveness Research (pSCANNER)
University of California, San Diego (UCSD) - PaTH: Towards a Learning Health System in the Mid-Atlantic Region
University of Pittsburgh - Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)
Harvard University
PPRN information from PCORnet: “New or existing Patient-Powered Research Networks (PPRN) comprise patients and/or caregivers who are motivated to build an ideal network and play an active role in patient-centered comparative effectiveness research.”
The 18 PPRNs include:
- ALD Connect
ALD Connect, Inc. - American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network)
University of South Florida - ARthritis patient Partnership with comparative Effectiveness Researchers (AR-PoWER PPRN)
Global Health Living Foundation - CCFA Partners Patient Powered Research Network
Crohn’s and Colitis Foundation of America - Community-Engaged Network for All (CENA)
Genetic Alliance, Inc. - COPD Patient Powered Research Network
COPD Foundation - DuchenneConnect Patient-Report Registry Infrastructure Project
Parent Project Muscular Dystrophy - Health eHeart Alliance
University of California, San Francisco (UCSF) - ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and Ulcerative Colitis
Cincinnati Children’s Hospital Medical Center - Mood Patient-Powered Research Network
Massachusetts General Hospital - Multiple Sclerosis Patient-Powered Research Network
Accelerated Cure Project for Multiple Sclerosis - NephCure Kidney International
Arbor Research Collaborative for Health - Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium
Duke University - Phelan-McDermid Syndrome Data Network
Phelan-McDermid Syndrome Foundation - PI Patient Research Connection: PI-CONNECT
Immune Deficiency Foundation - Rare Epilepsy Network (REN)
Epilepsy Foundation - Sleep Apnea Patient Centered Outcomes Network (SAPCON)
American Sleep Apnea Association - Vasculitis Patient Powered Research Network
University of Pennsylvania
The Nephrology PPRN
NephCure Kidney Network for Patients with Nephrotic Syndrome is the nephrology focused PPRN. Organized through the Arbor Research Collaborative for Health, this group is interested in treatments for Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), and Membranous Nephropathy (MN). Health information interoperability creates the opportunity for research in these relatively rare glomerular diseases, which have traditionally been studied in academic silos. Through PCORnet, patients will be virtually studied together. Patient-reported data will be captured to enhance research findings. NephCure Kidney Network will create data interoperability by using the Patient Crossroads CONNECT platform to standardize terminology and facilitate data mapping across networks.
Dr. Richard Platt, MD MSc who leads the PCORnet Coordinating Center from the Harvard Pilgrim Healthcare Institute notes that this research innovation will change the way healthcare “creates new knowledge.” PCORnet embeds clinical research directly into the clinical care delivery system and enables patients to contribute directly to research priorities and data. PCORnet is a step in making good use of all of the data collected at the point of care of every patient every day.
We’d like to hear your impressions of the PCORnet. Please share any thoughts or experiences in a comment.
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