Toward a science of learning systems: a research agenda for the high-functioning Learning Health System.

OBJECTIVE: The capability to share data, and harness its potential to generate knowledge rapidly and inform decisions, can have transformative effects that improve health. The infrastructure to achieve this goal at scale--marrying technology, process, and policy--is commonly referred to as the Learning Health System (LHS). Achieving an LHS raises numerous scientific challenges. MATERIALS AND METHODS: The National Science Foundation convened an invitational workshop to identify the fundamental scientific and engineering research challenges to achieving a national-scale LHS. The workshop was planned by a 12-member committee and ultimately engaged 45 prominent researchers spanning multiple disciplines over 2 days in Washington, DC on 11-12 April 2013. RESULTS: The workshop participants collectively identified 106 research questions organized around four system-level requirements that a high-functioning LHS must satisfy. The workshop participants also identified a new cross-disciplinary integrative science of cyber-social ecosystems that will be required to address these challenges. CONCLUSIONS: The intellectual merit and potential broad impacts of the innovations that will be driven by investments in an LHS are of great potential significance. The specific research questions that emerged from the workshop, alongside the potential for diverse communities to assemble to address them through a 'new science of learning systems', create an important agenda for informatics and related disciplines.

Natural language processing: state of the art and prospects for significant progress, a workshop sponsored by the National Library of Medicine.

Natural language processing (NLP) is crucial for advancing healthcare because it is needed to transform relevant information locked in text into structured data that can be used by computer processes aimed at improving patient care and advancing medicine. In light of the importance of NLP to health, the National Library of Medicine (NLM) recently sponsored a workshop to review the state of the art in NLP focusing on text in English, both in biomedicine and in the general language domain. Specific goals of the NLM-sponsored workshop were to identify the current state of the art, grand challenges and specific roadblocks, and to identify effective use and best practices. This paper reports on the main outcomes of the workshop, including an overview of the state of the art, strategies for advancing the field, and obstacles that need to be addressed, resulting in recommendations for a research agenda intended to advance the field.

Survey of consumer informatics for palliation and hospice care.

CONTEXT: Palliation in patient care is under-utilized in part because many patients have insufficient knowledge about this management option. Information technology can improve awareness by providing access to numerous sources of trustworthy information. EVIDENCE ACQUISITION: To estimate what a patient interested in palliation might find online, online resources were searched in July 2010, using terms relevant to palliation. PubMed was searched for publications relevant to discussed topics. EVIDENCE SYNTHESIS: Search engines returned vast numbers of hits, and identifying trustworthy sites was difficult. Products judged as trustworthy were classified as information, decision tool, or extended interaction tool. Sites with useful educational material were relatively plentiful; decision guides or interactive tools were much rarer. Available consumer informatics did not address some terminal illnesses very well, and some subpopulations such as children, nor was there sufficient attention to literacy levels or principles of instructional design. Online or published information about usage numbers, effectiveness, and cost/benefit considerations was scant. Many sectors, including commercial, government, healthcare, research, and wellness/advocacy groups, have created consumer informatics for palliation. CONCLUSIONS: Online information about palliation is available, although identifying trustworthy sources can be problematic. General information sites are relatively plentiful, but more tools for decision making, and interaction would increase value of web resources. More attention to literacy levels, instructional principles, and needs of special populations would improve products. Research to measure usage of such tools, ability to influence behavior, and cost/benefit issues is needed.

Archiving the phenome: clinical records deserve long-term preservation.

Retention policies for clinical records are set primarily by the states, although the federal government mandates minimum maintenance periods for certain classes of patients and selected types of information. State policies vary considerably, but most jurisdictions permit many types of data to be destroyed after some period usually shorter than 10 years. Many health care organizations hold records longer than mandated, but over time much clinical data are discarded or become difficult to access. For improved care of patients and for support of research, the nation should recognize that clinical information, both paper and electronic, constitutes a valuable asset, the national phenome, that deserves long-term storage in archives that preserve both the records and access to the information. The technical and social problems of establishing archiving are formidable but offer an opportunity to exploit the potential of clinical information for public good.

Bridging the gap in medical informatics and health services research: workshop results and next steps.

In January 2000, the Agency for Healthcare Research and Quality (AHRQ) and the National Library of Medicine (NLM) cosponsored an invitational workshop entitled "Medical Informatics and Health Services Research: Bridging the Gap." Planned by a small committee of representatives from NLM and AHRQ institutional training centers, the workshop was designed to address the need for education of researchers interested in working at the intersection of the fields of medical informatics and health services research. More than 100 educators and researchers from AHRQ- and NLM-sponsored training programs in medical informatics and health services research participated in the workshop. Through a series of plenary presentations and breakout sessions, the workshop addressed ways of increasing the pool of persons interested, trained, and experienced in addressing specific areas of synergy between the two fields. This paper reports on the results of the workshop.