Category Archives: Learning health systems

NIH Collaboratory ABATE Infection Trial Highlighted in Wall Street Journal

Clinical outcomes, Clinical trials, Cluster Randomized Trials, Learning health systems, Pragmatic clinical trials, , , , ,
Susan Huang, MD, MPH
Dr. Susan Huang

The ABATE Infection trial, an NIH Collaboratory project led by Dr. Susan Huang, is featured in the September 12 Health section of the Wall Street Journal. The article describes several studies aimed at preventing the hospital-associated infection MRSA (methicillin-resistant Staphylococcus aureus).

In the Reduce MRSA trial, published in 2013, Dr. Huang’s team demonstrated that treating ICU patients with a germ-fighting soap plus a nasal antibiotic ointment, an approach called “universal decolonization,” was superior to standard approaches in preventing MRSA infections. The ABATE Infection trial examines similar approaches to decolonization for all patients in non–critical care medical and surgical units, comparing the use of an antiseptic bath and nasal ointment to standard bathing and showering. More than 1 million showers and baths were taken over the course of the study, which has now completed enrollment. Data from ABATE are currently being analyzed, with the results expected to inform whether this strategy is effective in reducing hospital-associated infections.

“These are preventable infections and we should be able to drive them down to zero.” Susan Huang, MD

Read The Ultimate Battle Against MRSA in the WSJ.

Read more about the ABATE Infection trial.

Watch the ABATE Infection training video.

Collaboratory phenotypes paper published in eGEMs special issue

Clinical trials, Data standards, Electronic health records, Learning health systems, Research tools, , , ,

A recently published special issue of eGEMs explores strategic uses of evidence to transform healthcare delivery systems. In A Framework to Support the Sharing and Re-Use of Computable Phenotype Definitions Across Health Care Delivery and Clinical Research Applications, Rachel Richesson and Michelle Smerek of the NIH Collaboratory’s Phenotypes, Data Standards, and Data Quality Core, along with coauthor C. Blake Cameron, envision an infrastructure that facilitates re-use of computable phenotypes in a learning healthcare system.

The authors elaborate on four required components of the framework:

  • Searchable libraries of explicitly defined phenotype definitions
  • Knowledge bases with information and methods
  • Tools to identify, evaluate, and implement existing phenotype definitions
  • Motivated users and stakeholders

Read the entire eGEMs open access publication here. eGEMs (Generating Evidence & Methods to improve patient outcomes), a product of AcademyHealth’s Electronic Data Methods (EDM) Forum, is a peer-reviewed, open access journal that seeks to accelerate research and quality improvement using electronic health data.

Related resources:

You can find extensive information on computable phenotypes in the Living Textbook chapter and in Tools for Research.

Closer Partnerships Needed Between Researchers and Healthcare Executives

Learning health systems, Pragmatic clinical trials, , , ,

Larson-JohnsonIn a commentary published this week in Modern Healthcare, Eric Larson, MD, MPH, and Karin Johnson, PhD, of Group Health Research Institute, argue that greater collaboration is needed between clinical researchers and healthcare system executives to address a “a gap between research approaches and delivery system needs.” Perspectives gathered through a survey and Institute of Medicine workshop with healthcare executives indicated that research is not conducted fast enough or designed in a way that facilitates translation of evidence into clinical practice. The NIH Collaboratory and National Patient-Centered Clinical Research Network (PCORnet) are cited as examples of effective partnerships between researchers and healthcare leaders; these research programs are addressing high-priority clinical questions and generating actionable knowledge. According to Drs. Larson and Johnson, pragmatic clinical trials and big data offer opportunities to create a learning health system, but this will require combining the perspectives and expertise of researchers and stakeholders from healthcare delivery systems. Drs. Larson and Johnson are part of the NIH Collaboratory’s Health Care Systems Interactions Core, a working group that “aims to support and facilitate productive collaboration between researchers, clinicians, and health system leaders.”

Related links:

Study Examines Public Attitudes Toward Data-Sharing Networks

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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

Learning health systems,

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.

New IOM Report on Integrating Research and Practice

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The Institute of Medicine (IOM) has released a new report, Integrating Research and Practice: Health System Leaders Working Toward High-Value Care: Workshop Summary. The report summarizes the presentations and discussions from two meetings held in April and June 2014 by the IOM’s Roundtable on Value & Science-Driven Health Care, with sponsorship from the Patient-Centered Outcomes Research Institute (PCORI).

The workshops brought together health system leaders and researchers to discuss partnerships for progress toward a learning healthcare system in which the continuous generation of knowledge informs better care. Attendees identified challenges and established priorities in integrating clinical research into healthcare delivery systems. There was a particular focus on the recently established National Patient-Centered Clinical Research Network (PCORnet).

View the Workshop Summary
(Note: The workshop summary contains the opinions of the workshop presenters and does not reflect conclusions of the IOM.)

New Living Textbook Chapter – Learning Healthcare Systems

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A new Living Textbook topic chapter, “Learning Healthcare Systems,” has just been published. The topic includes background information on the creation and evolution of the concept of the learning healthcare system and the key attributes that define such systems, as described by the Institute of Medicine:

A learning healthcare system is [one that] is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care [1].

Also included in the topic chapter are ethical and regulatory implications for learning healthcare systems, patient and public engagement, the application of electronic heatlh records and other information technology, logistical and organizational challenges to bulding learning healthcare systems, and early examples of such systems in practice.

Reference

1. Institute of Medicine. The Learning Healthcare System: Workshop Summary. Olsen L, Aisner D, McGinnis JM, eds. Washington, DC: National Academies Press; 2007. Available at: http://www.iom.edu/Reports/2007/The-Learning-Healthcare-System-Workshop-Summary.aspx. Accessed April 4, 2014.

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

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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.