Patients Charting the Course Citizen Engagement and the Learning Health System: Workshop Summary (2011) / Chapter Skim
Currently Skimming:
10 Common Themes and Opportunities for Action
10 Common Themes and Opportunities for Action
Pages 235-244
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From page 235... ...
This chapter provides a review of those common themes, and also summarizes a session entitled Strategies and Priorities in which panelists were asked to reflect on what they heard about compelling policy issues moving forward. Emerging from workshop discussion is the notion that a learning health system should focus on patients and their family, caregivers, or agents; should default to openness; should listen to the patient's voice; and should promote respect, transparency, and patient feedback.
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tion to the patient's voice on issues, perspectives, goals, and preferences. These patient views should then be used to guide clinical decisions, which often involve choices among multiple treatments that have both benefits and risks.
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Since the sequencing of the human genome was accomplished, medical science has sought to personalize treatments to specific biological traits and genetics, in addition to personalizing care based on individual patient circumstances and preferences. This effort challenges the traditional approach of giving the highest priority to evidence gathered by means of large randomized controlled clinical trials, in which treatments are measured in a large population with a diverse genetic profile.
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From page 238... ...
Effective teams are aided by an appropriate information technology infrastructure, which facilitates efficient and effective communication of health information. Encouraging the use of such teams will likely require the use of financial incentives, including bundled payments and payments that focus on outcomes; applying disincentives for poor outcomes, such as for preventable hospital readmissions; and creating incentives for delivery system reforms, including medical homes and accountable care organizations.
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From page 239... ...
A focus of the workshop was the stake of the patient in fostering a digital health utility that provides needed information to patients and their clinicians, ensures synchronization among providers, and generates knowledge for progress -- for example, for comparative effectiveness insights, public health activities, or postmarket monitoring of approved technologies and drugs. Reference was made, for example, to the need for a common core data set for electronic health record–based data that would allow reliable, platformindependent research across large patient populations.
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Frequently suggested strategies for patient engagement included: involving patients as partners in the design of research, inviting patients to technology assessment and coverage-decision making meetings, stimulating dialogue between patients and industry, asking patients about their opinions of the health system, fostering shared decision making, and sharing information in the most transparent way. Focus on Learning The Roundtable vision of a learning health system was frequently referenced by participants.
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Public understanding of health issues is heavily influenced by news media reporting. Current health reporting entails covering complex financial, public policy, and scientific issues, ranging from health insurance structures to clinical trial results to legislative proposals.
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With the passage of the Affordable Care Act, the Roundtable has new opportunities to engage in those five areas and promote the creation of a learning health system. The meeting's discussions identified a number of promising suggestions for continuing the Roundtable's work to achieve a learning health system, with the following issues deserving further attention and action by the members of the Roundtable.
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• Since an effective health information utility was identified as a prerequisite for care coordination, continuous learning, and mea surement of outcomes, what steps could Roundtable members and its Electronic Health Record Innovation Collaborative take to ac celerate the adoption and use of such a utility? • Given the accelerated development of medical evidence, what might the Roundtable do to explore expanded decision support at the point of care?
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There is an opportunity to reach this ideal, but it will take commitment from all stakeholders, leadership, and diligence to reach a health system where patients are able to chart their own course. REFERENCE Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, A.M.A., 1999.
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