Digital Infrastructure for the Learning Health System The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary (2011) / Chapter Skim
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Appendix B: Case Studies for the Digital Health Infrastructure
Appendix B: Case Studies for the Digital Health Infrastructure
Pages 255-276
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From page 255... ...
has developed an informatics program designed to improve patient care and accelerate scientific discoveries by enabling the collection and analysis of large amounts of biological and clinical information and facilitating connectivity and collaboration among biomedical researchers and organizations. Called caBIG® (cancer Biomedical Informatics Grid)
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From page 256... ...
While the caBIG® community is highly diverse, its members have similar needs for data management and analysis. Through participation in the caBIG® program, they are able to access the informatics infrastructure required to work productively, advancing the knowledge of the underlying causes of disease and providing improved patient outcomes.
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From page 257... ...
In addition, pilot projects have successfully connected caGrid to other networks, including the Nationwide Health Information Network, the CardioVascular Research Grid, and the computational network TeraGrid. Ultimately, the vision of the caBIG® program is to provide the technical infrastructure for a resource called the Biomedical Knowledge Cloud.
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caBIG® is based on the belief that strong confidentiality, privacy, and security measures are both necessary and feasible in any electronic health information exchange environment, and that the measures can be scaled to accommodate a broad range of participants without unnecessarily impeding scientific discovery and medical progress. The program has developed robust computer security measures to ensure that only researchers with the appropriate credentials have access to data, as well as guidelines to assist those researchers in determining the sensitivity of their data for sharing.
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From page 259... ...
As currently envisioned, participating data partners will access, maintain, and protect their respective data, functioning as part of a "distributed system." Collaborating organizations will also include patient and healthcare professional advocacy groups, academic institutions, and regulated industry, among others. In the active surveillance environment of the Sentinel System, FDA will prioritize safety questions that have emerged from premarket or postmarket safety data sources (e.g., clinical trial data, postmarket adverse event reports)
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is creating a kind of laboratory, giving FDA the opportunity to access disparate automated healthcare data sources and test epidemiological and statistical methodologies in the evaluation of postmarket safety issues. Through this pilot, FDA will learn more about some of the barriers and challenges, both internal and external, to establishing a Sentinel System for medical product safety monitoring.
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FPC is an expansion of the SafeRx project, a collaboration between FDA and CMS that uses Medicare and Medicaid data for medical product safety surveillance. The FPC is similar to the Mini-Sentinel pilot in that it will use an active surveillance approach and involves a distributed system.
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From page 262... ...
These meetings encompass a range of formats including webinars on active surveillance–related topics, expert panels on targeted topics central to the development of the Sentinel System, public meetings on the progress of the Sentinel Initiative, and meetings intended to interweave lessons learned by various active surveillance initiatives. In addition to convening and moderating each meeting, Brookings is synthesizing findings and making them publicly available in order for other organizations and individuals to use the information to further develop active medical product surveillance methods and systems.
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Early activities of the Sentinel Initiative included meetings with a • broad range of stakeholders including other government agencies, potential data partners, patient advocacy groups, professional so cieties, academia, and regulated industry. To ensure continued input of all stakeholder groups, in 2009 FDA • awarded a cooperative agreement to the Brookings Institution to function as a convener on topics related to active medical product safety surveillance.
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We must train the next generation of statisticians and epidemiologists to ensure that we will have a workforce with the skills to support active medical product safety surveillance.
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hospitals (Mass General, Sutter, Sisters of Mercy, • Health Partners, etc.) Leading disease management companies (Health Dialog, Alere, • etc.)
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at Kaiser Permanente Kaiser Permanente has been using information technology for more than 40 years to improve clinical and administrative functions. Its use of electronic health records (EHRs)
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As a result, more than one-third of health plan members nationwide (and nearly one-half of members in Northern California) are using a web portal called My Health Manager to track selected medical information from the EHR, view a history of physician visits and preventive care reminders, schedule and cancel appointments, refill prescriptions, and send secure electronic messages to their care team or pharmacist.
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From page 268... ...
For example, three-quarters or more of online users surveyed agreed that the portal enables them to manage their health care effectively and that it makes interacting with the health care team more convenient. Patients in the Northwest region who used online services made 10 percent fewer primary or urgent care visits than before they had online access (7 percent fewer visits compared with a control group of patients)
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From page 269... ...
The team uses a population database and decision support tools built into the EHR to track patients with chronic conditions such as diabetes or heart disease, develop action plans to engage them in self-care, ensure that they are taking appropriate medications, and remind them to get preventive care and other tests when needed. Outreach to patients with chronic conditions typically occurs as follows: The physician reserves a weekly appointment slot to meet with his or her staff and review a computer-generated list of 10 to 20 patients who are not achieving treatment goals.
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Pursuing Advances in Medicine In Northern California, Kaiser Permanente's Division of Research conducts epidemiological and health services research to improve the health and medical care of members and the population at large. A major current project is assembling one of the world's largest biobanks of genetic,
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Almost 400,000 Northern California members have volunteered to participate in the program by completing a health survey and are being asked to contribute saliva samples for DNA analysis. Lessons Learned The Right People at the Table It's imperative that clinicians play a significant role in the planning, design and implementation of an EHR system.
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From page 272... ...
Since then, Consumers Energy has created the Smart Services Learning Center, a smart-grid testing and demonstration facility, to assess vendor products and provide product and integration testing. The company performs product field tests by using strategically deployed off-grid meters that are tied back wirelessly to the center.
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There is no need for consensus among the nodes on how they should operate within local boundaries. Instead, the approach accommodates highly diverse nodes connecting to the Smart Grid using open data translation protocols that standardize information management, rather than using the internal workings of each node.
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4 Prepared by Roundtable Staff using the following sources: Fowler, J Gone chaordic: Dee Hock, the mastermind behind VISA, has some ideas about reorganizing health care.
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The center-and-periphery model posed a logical solution to a fundamental problem within the credit card industry: member financial institutions were all competitors (issuing their own cards) but, in order to have a sustainable system, needed to all cooperate (regardless of which bank issues cards, all VISA cards must be accepted by all merchants)
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Some examples include • Maximize human ingenuity. Hock argues that the most abundant, least expensive, most underutilized, and frequently abused resource in the world was human ingenuity; the source of that abuse was archaic, Industrial Age institutions and the management practices they spawned.
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