Integrating Research and Practice Health System Leaders Working Toward High-Value Care: Workshop Summary (2015) / Chapter Skim
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2 Continuous Learning and Improvement in Health Care
2 Continuous Learning and Improvement in Health Care
Pages 11-30
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From page 11... ...
• Baxter also noted that PCORnet's success will not only ac celerate the pace of change, but it will also change the culture of research for the better by bringing patients, clinicians, and delivery system leaders into the research enterprise. • Rainu Kaushal said that she applauds the foresight of large health care system CEOs who, despite the fragmentation and competitive pressures, see that sharing data is the right thing to do for their health systems, for clinical care, and for populations.
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From page 12... ...
The workshop also heard presentations describing two of the CDRNs that are participating in PCORnet. Raymond Baxter, senior vice president for community benefit research and health policy at K aiser Permanente, and Elizabeth McGlynn, director of Kaiser Permanente's Center for Effectiveness and Safety Research, spoke about the Patient Outcomes Research to Advance Learning (PORTAL)
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From page 13... ...
The perspectives that the above-mentioned CEOs might have provided were noted in the opening pages of the 2012 IOM report Best Care at Lower Cost: The Path to Continuously Learning Health Care in America, which, McGinnis said, "looked very carefully at the state of play with respect to quality, cost, science, technology, and culture in health care and said, in effect, we're well past the time when health care should be lagging so far behind the best practices in other sectors and even in our own sector." McGinnis added, "We can do much better in terms of delivering the efficiency and effectiveness that the American people deserve." According to McGinnis, the committee that authored the report was saying that the health care system needs to transition away from a linear system in which learning opportunities are substantively lost (see Figure 2-1) to one characterized by a continuous feedback loop in which science yields evidence that is then applied to care and that care experience is captured to generate new knowledge.
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From page 14... ...
McGinnis also reminded the workshop participants that the Best Care at Lower Cost report had been revisiting the ground laid by two earlier IOM reports: To Err Is Human: Building a Safer Health System and Crossing the Quality Chasm: A New Health System for the 21st Century, which were issued in 1999 and 2001, respectively. The 2012 report, McGinnis said, provided an update on these two earlier reports in the context of the increasing complexity and cost of health care and also in the context of the new tools and levers that had become available for continuous quality improvement, through the provisions of the Health Information Technology for Economic and Clinical Health Act and the Affordable Care Act, as well as in the context of the overall increase in learning capacity stemming from advances in research methods and in the nation's digital infrastructure.
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From page 15... ...
The fourth assumption was that this is not an economic problem at heart, given the sizable investment in health information technologies, which is estimated to be some $34.5 billion in 2014. The fifth and final assumption was that this is not a political problem: Democrats and Republicans agree on the importance of developing an evidencebased learning health care system.
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From page 16... ...
. Selby said that he sees the patient-powered networks as "the really radical portion of PCORnet, those groups of activated patients who are charged to grow and to interact with the CDRNs." The overall goal of PCORnet, Selby explained, is to achieve a single functional research network through the following actions: • Create a secure national research resource that will enable teams of health researchers, patients, and their partners to work together on studying questions of shared interest.
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From page 17... ...
A steering committee consisting of a representative of each of the CDRNs and PPRNs along with patient advocates and representatives of medical product and device manufacturers, various agencies in the U.S. Department of Health and Human Services, and PCORI oversees a coordinating center that manages 11 task forces, each of which in turn oversees a mission-critical activity (see Figure 2-4)
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From page 18... ...
In reviewing the activities of the 11 issue-focused task forces that form part of the PCORnet coordinating center, Selby explained that the governance task force is concerned with issues such as who owns the data collected by the members of the networks, who can use the data, who can access the data, what is required to be a member of PCORnet, and what the expectations are regarding members securing additional funding to support PCORnet activities. Privacy is a critical activity, as it could prove to be either PCORnet's Achilles' heel or, as Selby put it, "a real triumph if we are able to bring patients, patient organizations, and delivery systems together with ethicists to discuss the benefits and the potential risks of big data and using big data to address questions of importance to patients." The ethics and regulatory oversight task force is looking at issues concerning informed consent and how to balance the concerns of institutional
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From page 19... ...
The data standards task force is not concerned with establishing a new set of standards but is looking at ways of encouraging electronic health record vendors to make greater and more consistent use of the nationally agreed-upon standards that already exist. The task force on health systems interactions is working to maintain, strengthen, and nurture PCORnet's relationships with health care delivery systems, while the patient and consumer engagement task force is doing the same for patient groups.
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From page 20... ...
Selby said that it is going to be critical to embed research, including randomized research, as intimately as possible within the practice setting TABLE 2-2 The Patient-Powered Research Networks Devoted to Common Diseases Population Organization PI Condition Size Accelerated Cure Project for Multiple Robert McBurney MulƟple sclerosis 20,000 Sclerosis American Sleep Apnea Association Susan Redline Sleep apnea 50,000 Cincinnati Children's Hospital Medical Peter Margolis Pediatric Crohn's disease and ulceraƟve 15,000 Center coliƟs COPD Foundation Richard Mularski Chronic obstrucƟve pulmonary disease 50,000 Crohn's and Colitis Foundation of R Balfour Sartor Inflammatory bowel disease (Crohn's 30,000 America disease and ulceraƟve coliƟs)
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From page 21... ...
PATIENT OUTCOMES RESEARCH TO ADVANCE LEARNING (PORTAL) NETWORK In the first of two presentations highlighting specific PCORNet CDRNs, Raymond Baxter and Elizabeth McGlynn described the PORTAL network developed by Kaiser Permanente and its principal partners Group Health Cooperative, HealthPartners, and Denver Health.
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From page 22... ...
"At least for Kaiser Permanente, that translates into a sense that we now see the need for a broad continuum of research and analytic capabilities in the organization, in order to answer the critical questions that we have." Among the other members of the PORTAL CDRN are three patient groups -- the Adult Congenital Heart Association, Fight Colorectal Cancer, and Smart Patients -- that Baxter said play a critical role in driving the activities of the PORTAL network. PORTAL members see their network as being able to contribute quickly to PCORnet, thanks to the internal resources that PORTAL puts at their disposal, the connection between their delivery systems, and their research and analytic activities.
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From page 23... ...
These lessons informed Kaiser Permanente's investment in its Center for Effectiveness and Safety Research, which the organization established in 2009 to answer delivery system questions and to help stabilize the organization's data infrastructure so that it could answer a wide range of questions without having to rework the organization's central data model for every new research project. PCORnet is the "roof on the house that we are building," McGlynn said.
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From page 24... ...
In addition, PORTAL is developing a large online community using the Smart Patients online platform, which allows the network to invite everyone who would be eligible from one of its cohorts to participate in an online community conversation with an even broader reach than its patient engagement council can provide. PORTAL is also working through its community benefit group to reach out to community-based organizations, which will enable it to have conversations with stakeholders who, as McGlynn said, "may not be as online savvy and that represent some of the underserved populations that we don't always hear from." PORTAL's clinician engagement council aims to broadly engage physicians in the conversation and to help determine the best ways to integrate research and research findings with the care delivery system.
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From page 25... ...
As a result, she explained, when the opportunity arose to build the infrastructure to support clinical research and care and to manage health on a population basis, the 22 partners in the New York City CDRN jumped at the chance to participate, she said. The partners in this CDRN include six academic medical centers, one practice-based research network, six consumer partners, and six research infrastructure organizations, including the New York Genome Center, several information exchanges, and Cornell's new technology campus.
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From page 26... ...
"In that context, privacy and security are our guardrails, and we are putting an incredible amount of energy right now into figuring out those guardrails and making them as secure as we possibly can." The second goal is to build a research infrastructure populated by complete comprehensive longitudinal data on a minimum of 1 million patients, although, given the populations of New York City, she said she expects that number will be higher by the end of the project. Kaushal said that the plan is to incorporate clinical data, claims data, patient-reported survey data, biospecimen data, and patient-generated data into the database.
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From page 27... ...
"That is a very tangible benefit for us as a system," he said. Steven Lipstein of BJC Health care asked Kaushal how the New York City CDRN handles IRB approvals involving multiple institutions in the network and how it handles patient recruitment, given that there may be competition among institutions and clinical trials.
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From page 28... ...
Selby answered that that type of question was something that PCORnet could address. Petra Kaufmann from NIH said that the National Center of Advancing Translational Sciences, where she works, recently received an IOM report reviewing the Clinical and Translational Science Awards program, and one of its recommendations was to strengthen the capacity of the program to function as a network and, in particular, to leverage existing information technology systems.
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From page 29... ...
You can talk to patients about their responsibilities vis-à-vis EHRs and PCORnet once you've given them a seat at the table and once they feel that this is their enterprise as well." Darrell Kirch of the Association of American Medical Colleges said that the challenge for trainees is that they often have to deal with multiple medical record systems as they move through different rotations during their years of training. He also said that medical education needs to change to reflect the fact that EHRs will have uses far beyond billing.
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