3 Challenges for the National Patient-Centered Clinical Research Network (PCORnet)

3 Challenges for the National Patient-Centered Clinical Research Network (PCORnet)

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 3 Challenges for the National Patient-Centered Clinical Research Network (PCORnet)


Have you noticed that a lot of health information created daily during patient visits is still not digitized? And if it is, the opportunities to use this data for research and for prevention are often missed because the networks that store this data cannot easily collaborate or communicate with each other.

Finally, at the end of last year, scientists and technologists began, for the very first time, stitching together patient health information across numerous data repositories from hospitals, academic research centers, health clinics and many others. This massive network will give scientists and doctors the ability to ask countless health questions with quick response times and at little cost. With 15 to 20 million American’s health records stored and connected, questions such as which profiles will be more susceptible to cancer or which drug or treatment option is most effective can be more confidently answered.

This $100 million nationwide Patient-Centered Clinical Research network (PCORnet)
is funded by the Patient-Centered Outcomes Research Institute (PCORI), a non-profit formed as part of the Affordable Care Act’s overhaul of the US health care system.

Before a complete data integration with 11 Clinical Data
and 18 Patient-Powered Research Networks
can be realized, there are numerous challenges to overcome. If recent headlines are any indication, topics such as privacy, data ownership and access will no doubt be debated.

I’ve taken three recent health privacy news stories to help explore what PCORnet might be facing as they’re building their new venture.

1. How much of our data is really safe and secure?

Because some state agencies are not “covered entities”, state health agencies can be exempt from HIPAA and for decades have been de-identifying some patient’s health information and selling it to researchers, pharmaceutical companies, insurance companies, and data brokers. Despite de-identifying patient information, last year Director of Harvard University’s Data Privacy Lab Latanya Sweeney and Bloomberg News reported
that some hospital patients could be re-identified when a database, sold by the state for $50, was combined with news and public information.

To help protect your ePHI, here are some steps you can take.

2. EdTech startup with plans to build nationwide database closed down

PCORnet received the same amount of funding as this EdTech startup, which had plans to collect and analyze data from US schools, but recently closed down over privacy concerns. During last month’s Big Data and Health conference, Joel Reidenberg, Visiting Professor of Computer Science and Visiting Research Scholar of Information Technology Policy at Princeton said, “Privacy will crash big data if we don’t get it right,” He cited this out-of-business EdTech startup which was designed to help students become better learners, but lost all nine of its state partners.

3. What rights do patients have regarding their own personal health information and who should have access?

Patients, doctors, hospital administrators and third party vendors all contribute to the creation of patient health data, but unlike intellectual property, for example, where the creators usually have rights, when it comes to ePHI, patient rights to the health data must also be considered.  For example, it’s not yet been established where we can we go to correct our own personal health information if it needs to be updated. There is a growing debate
, and because PCORnet is scheduled to launch September 2015, this might be a good time for the department of Health and Human Services to issue a set of guidelines to address these questions.


  • 11 Clinical Data Research Networks
  1. The Children’s Hospital of Philadelphia
  2. University of Pittsburgh at Pittsburgh
  3. Oregon Community Health Information Network
  4. The Chicago Community Trust
  5. Kaiser Foundation Research Institute
  6. Louisiana Public Health Institute
  7. Weill Medical College of Cornell University
  8. University of California San Diego
  9. Harvard University Medical School
  10. University of Kansas Medical Center
  11. Vanderbilt University Medical Center
  • 18 Patient-Powered Research Networks
  1. Accelerated Cure Project for Multiple Sclerosis
  2. ALD Connect, Inc.
  3. American Sleep Apnea Association
  4. Arbor Research Collaborative for Health
  5. Cincinnati Children’s Hospital Medical Center
  6. COPD Foundation, Inc.
  7. Crohn’s and Colitis Foundation of America, Inc.
  8. Duke University
  9. Epilepsy Foundation
  10. Genetic Alliance, Inc.
  11. Global Healthy Living Foundation
  12. Immune Deficiency Foundation
  13. Massachusetts General Hospital (The General Hospital Corp.)
  14. Parent Project Muscular Dystrophy
  15. Phelan-McDermid Syndrome Foundation
  16. The Trustees of the University of Pennsylvania
  17. University of California San Francisco
  18. University of South Florida

Image credit: PCORnet