A Rapid-Learning Health System

Etheredge, Lynn

doi:10.1377/hlthaff.26.2.w107

Cited by 264 publications

(180 citation statements)

References 9 publications

(2 reference statements)

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“…In addition, consideration of relationshipcentered principles, 72,73 such as transparency and trustworthiness, responsiveness to concerns, early and consistent engagement, and openness to diverse perspectives, is necessary to ensure that research is informed by the perspectives of multiple stakeholders. 74,75 These methods can contribute to a continuously learning health system [76][77][78] that includes targeted populations, surrounding communities, and all stakeholders. The needed inclusive work is facilitated by developing a common lexicon across diverse stakeholders and by consistently requiring consideration of relevant contextual factors in funding proposals and journal reporting.…”

Section: Methods For Generating the Needed New Knowledgementioning

confidence: 99%

Understanding the Context of Health for Persons With Multiple Chronic Conditions: Moving From What Is the Matter to What Matters

Bayliss

Bonds

Boyd

et al. 2014

The Annals of Family Medicine

204

164

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PURPOSE An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC).METHODS Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research.RESULTS Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community.CONCLUSION Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life. INTRODUCTIONM ore than 1 in 4 Americans lives with the burden of more than 1 ongoing health condition, [1][2][3] and the number of persons living with multiple chronic health conditions is growing dramatically. 2,4 Medical costs for persons with chronic illnesses account for 75% of US health care spending, 4 and more than 90% of the Medicare spending on older adults is devoted to persons suffering from multiple chronic conditions (MCC). 5 This heavy expenditure has not yielded the desired increase in quality of life for those affected. 4 A strategic framework of the Department of Health and Human Services (DHHS) 6 and multiple proposals and programs from the private sector highlight the growing concern about persons living with MCC. 261Current health care and research approaches are largely mismatched to the challenge of persons living with MCC. Both health care and research are p...

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Section: Methods For Generating the Needed New Knowledgementioning

confidence: 99%

Understanding the Context of Health for Persons With Multiple Chronic Conditions: Moving From What Is the Matter to What Matters

Bayliss

Bonds

Boyd

et al. 2014

The Annals of Family Medicine

204

164

View full text Add to dashboard Cite

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“…A learning health system is organized around communities of patients, clinicians, and researchers who work together to purposefully integrate knowledge generation (research) with knowledge dissemination and implementation at the point-of-care (quality improvement). [14][15][16][17][18][19] ICN has included a chronic disease registry since 2007. Initially, it was used expressly for quality improvement.…”

mentioning

confidence: 99%

Effectiveness of Anti-TNFα for Crohn Disease: Research in a Pediatric Learning Health System

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: Studies on adult patients who have Crohn disease have shown a comparative benefit of antiTNFa versus placebo and thiopurines. These same studies have not been done in children, because of time, cost, and ethical (withholding an efficacious treatment) challenges. WHAT THIS STUDY ADDS:Anti-TNFa therapy administered in routine practice to children with Crohn disease was more effective than usual care at achieving clinical and corticosteroid-free remission. Using data from the ImproveCareNow learning health system for observational research is feasible and produces valuable evidence. abstract OBJECTIVES: ImproveCareNow (ICN) is the largest pediatric learning health system in the nation and started as a quality improvement collaborative. To test the feasibility and validity of using ICN data for clinical research, we evaluated the effectiveness of anti-tumor necrosis factor-a (anti-TNFa) agents in the management of pediatric Crohn disease (CD).METHODS: Data were collected in 35 pediatric gastroenterology practices (April 2007 to March 2012 and analyzed as a sequence of nonrandomized trials. Patients who had moderate to severe CD were classified as initiators or non-initiators of anti-TNFa therapy. Among 4130 patients who had pediatric CD, 603 were new users and 1211 were receiving anti-TNFa therapy on entry into ICN.RESULTS: During a 26-week follow-up period, rate ratios obtained from Cox proportional hazards models, adjusting for patient and disease characteristics and concurrent medications, were 1.53 (95% confidence interval [CI], 1.20-1.96) for clinical remission and 1.74 (95% CI, 1.33-2.29) for corticosteroid-free remission. The rate ratio for corticosteroid-free remission was comparable to the estimate produced by the adult SONIC study, which was a randomized controlled trial on the efficacy of anti-TNFa therapy. The number needed to treat was 5.2 (95% CI, 3.4-11.1) for clinical remission and 5.0 (95% CI, 3.4-10.0) for corticosteroid-free remission. CONCLUSIONS:In routine pediatric gastroenterology practice settings, anti-TNFa therapy was effective at achieving clinical and corticosteroidfree remission for patients who had Crohn disease. Using data from the ICN learning health system for the purpose of observational research is feasible and produces valuable new knowledge. Over thelastseveraldecades,therapeutic advances in the treatment of pediatric Crohn disease (CD) have included the widespread use of immunomodulators such as 6-mercaptopurine, azathioprine, and methotrexate. [1][2][3] More recently, the anti-tumor necrosis factor a (anti-TNFa) biological agents (eg, infliximab and adalimumab) have been adopted as a treatment of moderate to severe pediatric CD. 4 Although several studies on adult patients who have CD have shown a comparative benefit of anti-TNFa versus placebo 5 and thiopurines, 6 these same studies have not been done in children because of practical (time and cost) and ethical (withholding an efficacious treatment) challenges.The cost of anti-TNFa is in the range...

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“…6 Singly and together, government and private entities are racing to make further significant investments in transforming the research and learning infrastructure and funding new initiatives to bring about a learning health care system. [7][8][9] The goal is to drive change in clinical practice by supporting research-based frameworks to integrate research into practice. 10,11 The concept of a learning health care system envisions interacting national and regional research networks that consist of multiple contributing nodes, or collaborations of providers and consumers of data or research.…”

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confidence: 99%

Optum Labs: Building A Novel Node In The Learning Health Care System

et al. 2014

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Unprecedented change in the US health care system is being driven by the rapid uptake of health information technology and national investments in multi-institution research networks comprising academic centers, health care delivery systems, and other health system components. An example of this changing landscape is Optum Labs, a novel network "node" that is bringing together new partners, data, and analytic techniques to implement research findings in health care practice. Optum Labs was founded in early 2013 by Mayo Clinic and Optum, a commercial data, infrastructure services, and care organization that is part of UnitedHealth Group. Optum Labs now has eleven collaborators and a database of deidentified information on more than 150 million people that is compliant with the Health Insurance Portability and Accountability Act (HIPAA) of 1996. This article describes the early progress of Optum Labs. The combination of the diverse collaborator perspectives with rich data, including deep patient and provider information, is intended to reveal new insights about diseases, treatments, and patients' behavior to guide changes in practice. Practitioners' involvement in agenda setting and translation of findings into practical care innovations accelerates the implementation of research results. Furthermore, feedback loops from the clinic help Optum Labs expand on successes and give quick attention to challenges as they emerge.

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A Rapid-Learning Health System

Cited by 264 publications

References 9 publications

Understanding the Context of Health for Persons With Multiple Chronic Conditions: Moving From What Is the Matter to What Matters

Understanding the Context of Health for Persons With Multiple Chronic Conditions: Moving From What Is the Matter to What Matters

Effectiveness of Anti-TNFα for Crohn Disease: Research in a Pediatric Learning Health System

Optum Labs: Building A Novel Node In The Learning Health Care System

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