The vision of a safe, efficient and cost-effective healthcare system supported by information technology was outlined in a recent Institute of Medicine report, “The Learning Health System Series: The Digital Infrastructure.”
According to the report, the primary intent of the meetings which brought it into existence was to identify and explore strategic opportunities for accelerating the evolution of a digital infrastructure — described as “the (healthcare) system’s nerve center, its circulation system, or the engine” — that will support and drive continuous improvement.
The report identified several rules to guide healthcare, which are intended to bring more, and more appropriate, information to bear for both clinicians and patients at the point of care.
The goal is to bring about the “emergence of a digital infrastructure that allows data collected during activities in various settings — clinical, research, and public health — to be integrated, analyzed, and broadly applied (‘collect once, use for multiple purposes’) to inform and improve clinical care decisions, promote patient education and self-management, design public health strategies, and support research and knowledge development efforts in a timely manner.”
The report heavily endorsed both the incorporation of population health data into the clinical decision making process and, “the direct involvement and support of patient and population roles in the generation of knowledge through the incorporation of user-generated data; understanding the benefits of information use in patient care and population health improvement; and improving patient access to health information to allow for a more active role in care decisions.
In terms of recommendations, the report supported taking an “ultra-large-scale systems (ULS) approach” to developing a digital infrastructure.
“ULS refers to the existence of a virtual system that has bearing on a social purpose — e.g. improving health and health care — and in which a few key elements, such as interchange representation, may be standardized, but whose many participants have diverse and even conflicting goals, so adaptability is key. Institutions retain flexibility for innovation in their choices, and evolutionary functional change can be shaped by architectural precepts, incentives, and compliance assessment, but not by centralized control.”
The report went on: “ULS functionality is therefore facilitated by protocols that allow maximum practical flexibility for participants. Incorporating decentralization of data, development, and operational authority and control, this approach fosters local innovation, personalization, and emergent behaviors. Participants felt that this approach was well suited to the complex adaptive characteristics of the health system, and that it could serve as an anchoring framework for approaching both the social and technical components of the overall infrastructure.”
On a more granular level, the report said stakeholders should endorse, “the principle of parsimony and minimizing centralization that might constitute a barrier to entry: specify only the minimal set of standards or requirements necessary for key functional utility, and push the maximum amount of control to the periphery.”
In setting the stage for its recommendations, the report seemed to specifically note that HITECH was a much needed step in the evolution of a digital healthcare system. ” … the diversity and limited compatibility of the products, and the lack of economic incentives to their use has, to date, restrained the broader uptake, application, and functional utility of digital capacity across the system.”
The report was the result of three meetings held in the summer and fall of 2010, bringing together researchers, computer scientists, privacy experts, clinicians, health care administrators, HIT professionals, representatives of patient advocacy groups, healthcare policymakers, and other stakeholders.
Gerry Higgins says
This is of great interest, because the recent reports from the President’s Council of Advisors on Science and Technology (PCAST)have recommended that a centralized, meta-data tagged health information exchange language (XML-like) be developed to provide linkage between all stakeholders. This was in response to a perceived failure of several of the HIEs.
In addition, the NITR&D report (12/10) recommended:
“Recommendation [Section 5]: The Federal Government, under the leadership of NSF and Health and Human Services (HHS), with participation from the Office of the National Coordinator for Health Information Technology (ONC), the Centers for Medicare and Medicaid Services (CMS), the Agency for Healthcare Research and Quality (AHRQ), the National Institute of Standards and Technology (NIST), the Veterans Health Administration (VHA), DoD, and other interested agencies, should invest in a national, long-term, multi-agency research initiative on NIT for health that goes well beyond the current national program to adopt electronic health records. The initiative should include sponsorship of multi-disciplinary research on three themes:
• to make possible comprehensive lifelong multi-source health records for individuals;
• to enable both professionals and the public to obtain and act on health knowledge from diverse and varied sources as part of an interoperable health IT ecosystem; and
• to provide appropriate information, tools, and assistive technologies that empower individuals to take charge of their own health and healthcare and to reduce its cost.
For more information, see the following PCAST reports, both on Networked Information Technology Research & Development (NITR&D), and Health Information Technology:
The NIH are using these reports as part of their recommendations for a future research roadmap.