Wednesday, June 01, 2016

#ONC Annual Meeting – Patient Centered Outcomes Research Projects (PCOR)

Today I am at the ONC Annual Meeting in Washington DC. I will be blogging from some of the sessions.

Building Data Infrastructure for Research through Patient-Centered Outcome Research (PCOR) (Room 203A/B)

ONC is currently developing policies, standards, and services that enable data to flow securely and efficiently for PCOR through five PCOR Trust Fund-funded data infrastructure initiatives. At this session, the federal leads for these 5 projects will provide an overview of each ONC PCOR project and educate audience members on how to become engaged in the projects themselves. In addition, the speakers will also explain how these efforts are part of a larger network of PCOR data infrastructure projects and how ONC’s PCOR initiatives will link to other important efforts both within and outside of ONC to build the necessary data infrastructure to collect, use and follow data for research.

  • Jamie Skipper, RN, PhD, Patient-Centered Outcomes Research (PCOR) Coordinator, ONC
  • Mera Choi, JD, Director, Standards Initiatives and Coordination Division, Office of Standards and Technology (OST), ONC
  • Michelle Murray, MS, MBA, Federal Co-Lead of ONC’s Patient Generated Health Data (PGHD) PCOR Project
  • Debbie Bucci, Federal Lead of ONC’s Patient Matching Aggregating and Linking (PMAL) PCOR Project
  • Devi Mehta, JD, MPH, Federal Co-Lead of ONC’s Privacy and Security for PCOR Project (PSP)

Here is the link:

Data Access Framework – Mera Choi

Working with HL7 FHIR and IHE

DAF Phase 3 – Data Access for Research

Patient Choice – FHIR Consent work.


DAF is about mapping common data elements.

Structured Data Capture – Mera Choi

Defines necessary requirements including metadata to facilitate collections of supplemental EHR Data.

Working with FHIR.

Aims to reduce the data collection burden on providers.
Improve clinical research

implement published interoperability standards.

Adopt and enhance standards for:
Forms / Templates
Data elements in the forms

  1. Blank Form
  2. Partially completed Form
  3. Completed Form

– Form Filler (EMR)
– Form Manager (Repository)
– Form Receiver

IHE – Quality Research Framework.

FHIR SDC Profile

  • Based on DSTU2 standard (Oct 2015)

FHIR SDC Pilot kicks off in Summer 2016.

SDC Tested through complete workflow.


Patient Generated Health Data (PGHD) – Michelle Murray

Creating a data infrastructure for PGHD.

PGHD supports a learning Health system.

PGHD enables individuals to become more engaged in their care.

  • Develop a white paper (Draft in late 2016)
  • Pilots to test and refine policy concepts.
  • Support outreach to shape and disseminate ideas.

Seven topic areas:
1. Collect and Validation of data and tools
2. Data donation
3. Statutory and regulatory gaps
4. Ability to combine PGHD with medical data
5. Patient recruitment for research studies and trials
6. Data Interoperability (Culture and workflow too)
7. Big data analytics

Patient matching aggregating and Linking (PMAL) – Debbie Bucci

5 Topic Areas:
1. Patient Matching
2. Privacy, Security APIs (HEART Workgroups)
3. NPPES Support (Provider Directory)
4. Pop Health
5. Pilots and Challenges

1. Improve data quality
2. Standardize attributes
3. Create open source tools

HEART Profiles to support Argonaut with Patient Mediated Exchange
including Consent and Delegation.
Layered Approach

Taking existing codebase and updating to FHIR.
Adding Patient match test harness.

Privacy and Security and Patient Choice Project – Devi Mehta

Recruited 40 PCOR stakeholders

Use cases:
– Combining data for PCOR
– Consent Management
– Using sensitive Data
– De-identification and re-identification of data
– Use of PGHD.

Final Policy Framework completed by September 2017

  • Basic Choice
  • Granular Choice

What is the impact of these projects for Researchers and Patients?

Putting patients at the center in the decision to share their data.

What is being done to standardize PHRs?

ONC sees PHRs as a module.

ONC is developing policy and standards to support evolution of PHRs and how they truly reflect the needs of the patient.

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