The PCAST Hearing

On February 15 and 16, the HIT Policy Committee and the HIT Standards Committee convened to hear testimony about the President's Council of Advisors on Science and Technology HIT Report.

The hearings consisted of 5 panels.   Here are the major themes.

Panel 1 focused on Health Information Exchange and Healthcare Stakeholders

Carol Diamond, MD, Markle Foundation
J. Marc Overhage, MD, Indiana HIE Organization
Art Glasgow, Vice President & Chief Technology Officer, Ingenix

* Trust is more complex than consent and cannot be achieved by technology alone
* Data source systems are frequently not able to meet reasonable service levels for response time and data persistence
* Data source organizations need assistance (strategy, policy, when to attached standardized vocabularies to data) in normalization data
* Need to balance mobilizing data verses losing context

Panel 2 focused on Patients / Consumer / Privacy Advocates

Donna Cryer, JD, CryerHealth Patient-Centric Solutions
Deborah Peel, MD, Patient Privacy Rights
Joyce Dubow, AARP
Lee Tien, Senior Staff Attorney, Electronic Frontier Foundation

* Consent is essential but not sufficient.  PCAST's heavy reliance on consent to achieve adequate privacy is a concern
* First goal of data use should be for treatment of patients and not for secondary uses
* Privacy preferences must be dynamic based on segmentation of data
* Must do proof of concept of pilots of DEAS and privacy
* PHRs can play a role in patients' ability to express granular privacy preferences
* Concern about adequacy of de-identification
* Many privacy issues not discussed during panel

Panel 3 focused on Population Health
Richard Platt, MD, Harvard Medical School, Distributed Health DataNetwork
Joyce C. Niland, Ph.D., Associate Director & Chair of Information Sciences, City of Hope

* Population and clinical research require persistent record sets, curated for the anticipated use
- Observational data is best suited for hypothesis generation
- Correct interpretation requires participation of originator in interpretation, semantic standards will crease but not eliminate this dependence
- research data models reflect study design, not data characteristics
- PCAST does not preclude and can support distributed data management
* Population studies require identification of the population (denominator) and the intervention sub-population (numerator)
- Granular consent and opt out by data suppliers could be problematic
- Policies must support continued use of public health
* De-identification is problematic

Panel 4 focused on Providers and Hospitals

Sarah Chouinard, MD, Medical Director, Primary Care Systems, Inc. and Community Health Network of West Virginia
John E. Mattison, MD, Kaiser Permanente
Scott Whyte, Catholic Healthcare West, provider using middleware
Kevin Larsen, MD, CMIO, Hennepin County Hospital
Theresa Cullen, MD, Indian Health Service, HHS

*PCAST Timeline too aggressive to execute
*Privacy tags may hinder normal institutional use of data
*Propagation/redaction of inaccurate data is a concern
*Middleware may bridge legacy systems to PCAST vision but has limitations
*Patient matching is problematic
*Novel PHR use may additional spur HIT adoption

Panel 5 focused on Technology implications of the report
Michael Stearns, MD, CEO, e-MDs, Small EHR Vendor
Hans J. Buitendik, M.Sc., HS Standards & Regulations Manager, Siemens Healthcare
John Melski,  Marshfield Clinic, homegrown EHR
Edmund Billings, Medsphere

*It is important to maintain the context of a clinical encounter and to preserve the meaning when the data is reused for purposes other than as originally intended.
*Capture structured data with appropriate granularity and controlled terminology.   A "data atom" should be the amount of data that makes sense for the particular use intended.
*Separate the syntax (the container used to send data) from semantics (the ontologies and vocabularies).   Admittedly, in healthcare summary standards, syntax has been driven by semantics, so this separation would require careful thought.
-Syntax is the study of the principles and rules for constructing sentences in natural languages.
-Semantics is the study of meaning. It typically focuses on the relation between signifiers, such as words, phrases, signs and symbols, and what they stand for.
-Information models or relationship types provide frameworks to maintain context.  Explicit representation of context must be integrated into an evolving Universal Exchange Language and may require specification of an information model.
*Evaluate the burden and timeframe and priority in the context of existing meaningful use and ICD10/5010 projects.
*Simply exchanging data does not necessarily lead to useful and accurate data.  We need to know how the data was captured, for what purpose, and by whom.
*Open source solutions should be considered to drive low cost solutions for data exchange
*Use existing profiles/technologies and middleware to meet PCAST data exchange goals. We should not rip and replace existing applications and standards.

We discussed one strawman idea for incorporating PCAST ideas into Stage 2 and Stage 3 of Meaningful Use.

Given that the Direct project  provides a means to push data securely using secure email standards, require that EHRs push immunization data in an electronic envelope containing metadata (we'll call that envelope the universal exchange language) to state and local immunization repositories as part of Meaningful Use Stage 2.   This will implement the Universal Exchange Language portion of the PCAST report.

ONC should begin work on connecting state level immunization registries with a person identified index and privacy controls.     This will implement the  Data Element Access Services (DEAS)  portion of the PCAST report.  

The DEAS will require significant additional policy and technology work that will not be ready by Stage 2.   Thus, by Stage 3 require that EHRs be able to query a DEAS to retrieve immunization data at the point of care so that clinicians can deliver the right immunizations at the right time to the right patients based on a nationwide federated network of immunization exchange.  It's good for patients, good for clinicians, good for public health, and does not raise too many privacy concerns.   Of course we should pilot granular privacy controls enabling individuals to control the flow of immunization information per their privacy preferences.

We'll have several additional meetings before the final workgroup report is issued.    I believe we're close to achieving consensus on the major concerns and next steps as we offer ONC options for incorporating the spirit of PCAST into their work.