Call for Action: The Time is Now for Patient Data Interoperability

The use of new technologies can provide breakthrough benefits for both patients and providers. However, with increased sharing comes increased risks to the security and privacy of patient data.

Currently data is being accumulated across many organizations and initiatives but is often either siloed or simply not accessible. Researchers suggest that patient education tactics can help quell security concerns during patient data sharing.

“We are on the cusp of a technological healthcare revolution centered on patients. The time is now.”
Seema Verma, administrator of the Centers for Medicare and Medicaid Services – Fireside Chat @PMWC Jan. 20-23

“The challenge is that individuals can face enormous obstacles in getting their data. They have a legal right to this data – but the institutions who hold this data still make it difficult for individuals to get their data.”
Deven McGraw (Chief Regulatory Officer, Ciitizen) – Session Chair, Overcoming Obstacles to Patient Data Sharing @PMWC Jan. 20-23

Biggest hurdles in getting individuals to share their health data?

Individuals don’t have…

  • Access to their own data
  • Control over their data
  • Enough trust in institutions to agree to release their data
  • Trusted options to donate their data for clinical research

To address these issues and obstacles as a community, we have designed an amazing track at PMWC, Jan. 20-23 in Santa Clara with various sessions:

  1. Fireside chat with Eric Dishman (NIH) and Sharon Terry (Genetic Alliance)
  2. Empowering Researchers, Citizen Scientists, and Patients via Successful Data Sharing – panel discussion chaired by Sharon Terry With Tom Insel (MindStrong) and Mitch Lunn (UCSF)
  3. Next Gen Data Collection and Sharing – various panels chaired by Sharon Terry with Bill Dalton (M2Gen), Bastian Greshake Tzovaras (Open Humans), Jason Bobe (Icahn Institute), and Dawn Barry (LunaDNA)
  4. A Panel on Empowering the Patient to Own and Control their Data – which includes Neil Richards (Washington University) and Anil Sethi (Ciitizen)
  5. Kenneth Park (IQVIA) on Data Privacy and Security Platforms
  6. Democratizing Precision Medicine via Ethical Data Capture and Use – chaired by Jason Crites (IBM) with Piers Nash (Sympatic Health)
  7. Coverage of various Data Collection Use Cases with Improved Patient Outcome – chaired by Judy Barkal (M2Gen) with Olena Morozova Vaske (UCSF), George Komatsoulis (CancerLinQ), and Laura Jelliffe-Pawlowski (UCSF)
  8. Overcoming Obstacles to Patient Data Sharing – panel chaired by Deven McGraw (Ciitizen) with Mark Savage (UCSF), Michael Morris (Curesoft), and Michael Halaas (Stanford)
  9. Enriching Genomics Data with Environment, Behavioral – talk by Rita Colwell (Johns Hopkins) on and Other Types of Data

I hope you can join 2500 others for the 5-TRACK PROGRAM co-hosted by UCSF, Stanford Health Care, Duke, Johns Hopkins & the University of Michigan.