learning health systems

September 19, 2017: The NIH Health Care Systems Research Collaboratory Turns Five!

Posted on by Karen Staman

Five years ago this September marks the birth of the NIH Health Care Systems Collaboratory, an NIH Common Fund project designed to build national infrastructure for conducting pragmatic clinical trials (PCTs). At the heart of the NIH Collaboratory is an ongoing series of NIH Collaboratory Trials that embed innovative pragmatic clinical research within the “real-world” conditions of working healthcare systems.

In addition to supporting these NIH Collaboratory Trials, the NIH Collaboratory also works to advance PCT methodologies and ensure that knowledge and lessons learned are disseminated as widely as possible. With a series of Core Working Groups dedicated to exploring different facets of trial design and conduct, the NIH Collaboratory has already made significant contributions to the knowledge base in the PCT arena. In addition, its Distributed Research Network allows rich electronic data resources to be efficiently queried by investigators while ensuring the security of confidential information.

As the NIH Collaboratory celebrates its fifth birthday, it is also preparing to embark upon a new phase of efforts. With the award of grant funding for an additional 5 years this September and the unveiling of the redesigned and expanded Living Textbook, the NIH Collaboratory offers a growing array of resources and knowledge that will equip health systems to engage in sustainable pragmatic clinical research on a national scale.

For more, see Duke Clinical Research Institute’s article on the Collaboratory’s first 5 years.

Study Examines Public Attitudes Toward Data-Sharing Networks

Posted on by Gina Uhlenbrauck

A new study examining public attitudes about the sharing of personal medical data through health information exchanges and distributed research networks finds a mixture of receptiveness and concerns about privacy and security. The study, conducted by researchers from the University of California, Davis and University of California, San Diego and published online in the Journal of the American Medical Informatics Association (JAMIA), reports results from a telephone survey of 800 California residents. Participants were asked for their opinions about the importance of sharing personal health data for research purposes and their feelings about related issues of security and privacy, as well as the importance of notification and permission for such sharing.

The authors found that a majority of respondents felt that sharing health data would “greatly improve” the quality of medical care and research. Further, many either somewhat or strongly agreed that the potential benefits of sharing data for research and care improvement outweighed privacy considerations (50.8%) or the right to control the use of their personal information (69.8%), although study participants also indicated that transparency regarding the purpose of any data sharing and controlling access to data remained important considerations.

However, the study’s investigators also found evidence of widespread concern over privacy and security issues, with substantial proportions of respondents reporting a belief that data sharing would have negative effects on the security (42.5%) and privacy (40.3%) of their health data. The study also explored attitudes about the need to obtain permission for sharing health data, as well as whether attitudes toward sharing data differed according to the purpose (e.g., for research vs. care) and the groups or individuals among which the data were being shared.

The authors note that while data-sharing networks are increasingly viewed as a crucial tool for enabling research and improving care on a national scale, they ultimately rely upon trust and acceptance from patients. As such, the long-term success of efforts aimed at building effective data-sharing networks may depend on accurately understanding the views of patients and accommodating their concerns.

Read the full article here: 

Kim KK, Joseph JG, Ohno-Machado L. Comparison of consumers' views on electronic data sharing for healthcare and research. J Am Med Inform Assoc. 2015 Mar 30. pii: ocv014. doi: 10.1093/jamia/ocv014. [Epub ahead of print]

Interdisciplinary Group Outlines Research Agenda for Realizing National-Scale Learning Health System

Posted on by Gina Uhlenbrauck

An article published online this month in the Journal of the American Medical Informatics Association (JAMIA) outlines research challenges that must be addressed to achieve a high-functioning learning health system (LHS) that uses data to generate knowledge and improve care in continuous cycles. The article, titled “Toward a Science of Learning Systems: A Research Agenda for the High-Functioning Learning Health System,” is the product of an international workshop sponsored by the National Science Foundation. The workshop involved 45 prominent interdisciplinary researchers, who examined use cases for a national-scale LHS to determine a path toward this goal.

“…the LHS can succeed only by creating novel combinations of role, process and technology. This must occur by working back from the future, not by figuring out how to fix the various problems with a current system that fails to learn rapidly, routinely, and at scale.”

The group synthesized a research agenda in the form of key questions targeted at four system-level requirements for a high-functioning LHS. The authors further propose that addressing these questions will involve evolution to a new interdisciplinary science of “cyber-social ecosystems” in which diverse stakeholders collaborate to drive innovation.

Additional information from the workshop, including participants, slides, and use cases, is available online.

Article authors include NIH Collaboratory Coordinating Center Co-Principal Investigator Richard Platt, MD, MSc, and Co-Chair of the NIH Collaboratory Electronic Health Records Core, Jeffrey Brown, PhD.

Institute of Medicine Convenes PCORI-Sponsored Workshop on Integration of Care and Research

Posted on by Gina Uhlenbrauck

Update:

Slides and a workshop summary are now available from the Institute of Medicine website.

On April 23-24, 2014, the Institute of Medicine held a Roundtable on Value & Science-Driven Health Care workshop titled “Health System Leaders Working Towards High Value Care Through Integration of Care and Research” in Washington, DC. The workshop, sponsored by the Patient-Centered Outcomes Research Institute (PCORI), brought together stakeholders from across research networks, health systems, industry, and the patient community to engage on barriers and opportunities in building a continuously learning health system, where routinely collected health data informs improvements in evidence-based care. Eric Larson, MD, MPH, of the Group Health Research Institute chaired the workshop Planning Committee.

Workshop goals included:

  • Fostering the development of a shared commitment, vision, and strategy among health system leaders building a national clinical research network
  • Broadening and deepening health systems’ leadership awareness of the prospects for and from a continuously learning health system
  • Learning from models and examples of productive integration of research with care delivery programs
  • Identifying common issues compelling to health systems leaders related to science, technology, ethics, regulatory oversight, business, and governance
  • Exploring strategic opportunities for executive, clinical, and research leaders to forge working partnerships for progress
  • Considering the approach and desirable outcomes of a meeting of CEO leaders vital to building and sustaining a functional, real-time national clinical research network

One particular focus of the meeting was the recently launched National Patient-Centered Clinical Research Network (PCORnet). Workshop participants included representatives from PCORnet’s Clinical Data Research Networks and Patient-Powered Research Networks. Speakers provided real-world examples of learning health systems and urged leaders to make a business case for the learning health system model. Speed and dissemination of research were discussed as important considerations for patients.

The meeting was open to the public via webcast. Archived meeting presentations will be made available; a link will be provided in an update to this post. Workshop-related tweets can be found with the hashtag #IOMPCORI.

View the workshop agenda and briefing materials.