Think Different - the sequel

 A long time ago, in technology years, a mid-size company made a name for itself with a tagline of "Think Different".  They had identified a set of industry challenges and set out to address them with innovations originating in Xerox PARC, and implemented through their creative genius and technical abilities.

Much more recently the President's Council of Advisors on Science and Technology(PCAST) issued a similar "think different" challenge to the healthcare technology industry and to the government leadership for health IT, contending that internet technology advances can help to address a number of critical issues for the healthcare system.

PCAST frames its case for change as follows:

• The healthcare system structure limits incentives for care coordination, information sharing and cost reduction.
• The current structure of health IT systems makes it difficult for providers and patients to access and use needed health information across organizationas and across various settings of care.
• There are limitations of exchange standards and infrastructure for information sharing across organizations, including information on data provenance
• The limited data exchange also hampers researchers and public health agencies access to information needed for comparative effectiveness and biomedical research.  
• Current health information exchange effectiveness is burdened by administrative requirements and has not proven their ability to scale out nationally.  
• Patients' privacy preferences for their health information are not sufficiently built into the existing standards

PCAST argues that "if health information technology is to have a truly transformative effect, the Federal Government should push ambitiously toward a national health data infrastructure in which patient data are readily available to providers in real time, can be accessed in de-identified form by researchers and public health agencies, and in which a market for applications that enhance EHR usability and patient involvement can flourish, enabling a “network effect” that can spur further adoption. The report describes a technological approach that could lead to this vision being realized, while at the same time strongly protecting privacy (including, where applicable, respecting the persistent privacy preferences of patients), and also describes some of the accompanying economic and regulatory steps that are required."

The PCAST recommendations include:

1. "Accelerate progress toward a robust exchange of health information.
2. Establish a new exchange architecture with a universal exchange language (UEL) and interlinked search capabilities coupled with strong privacy and security safeguards. The exchange architecture will enable clinicians and patients to assemble a patient's data across organizational boundaries and facilitate population health.
3. Establish an evolutionary transition path from existing installations to the new exchange architecture."

The PCAST end state vision includes three components:

1. "Every American will have electronic health records and will have the ability to exercise privacy preferences for how those records are accessed, consistent with law and policy.
2. Subject to privacy and security rules, a clinician will be able to view all patient data that is available and necessary for treatment. The data will be available across organizational boundaries.
3. Subject to privacy and security rules, authorized researchers and public health officials will be able to leverage patient data in order to perform multi-patient, multi-entity analyses."

The PCAST Workgroup, an advisory workgroup to the ONC's HIT Policy and Standards Committees, has prepared their draft report on the PCAST recommendations for "realizing the full potential of health information technology to improve healthcare for Americans: the path forward."  The PCAST Workgroup was charged with:

• Synthesizing and analyzing the public comments and expert testimony regarding the PCAST report;
• Discussing the implications of the report and it’s specific recommendations to ONC on current ONC strategies; 
• Assessing the feasibility and impact of the PCAST report on ONC programs;
• Elaborating on how these recommendations could be integrated into the ONC strategic framework.

The PCAST Workgroup findings include:

1. "The PCAST report describes a national use of advanced technology. It provides a compelling vision for how that technology could be beneficially used as an important aspect of the learning health system.
2. There are major policy and operational feasibility concerns with the proposed technology.
3. Aggressive and rapid progress is possible only with an incremental test-bed approach. Large operational tests are needed that resolve the policy and feasibility concerns."

The Workgroup did some excellent work on deployment models, implementation strategies, technical framework components, policy considerations and "paths of least regret" for Stage 2 meaningful use.  Digging into the Workgroup's dialog, there are also real issues with applying the PCAST primarily technical recommendations to practice and business of healthcare.  Some of these include managing privacy consent through DEAS, provenance, state health information policy compliance, consistency with fair information practices, alignment with other HIE initiatives and unlocking/retention of data.

And in a philosophical conclusion (Gandi-esque perhaps?) , the Workgroup contends that:

"The ultimate challenge is to find the correct balance between the inspirational goals of the PCAST report and the practical realities of a nationwide deployment of electronic health records. We respectfully submit this letter hoping that it will assist ONC in achieving that balance."