Achieving Health Equity via the Affordable Care Act Promises, Provisions, and Making Reform a Reality for Diverse Patients: Workshop Summary (2015) / Chapter Skim
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6 Consumer Engagement
6 Consumer Engagement
Pages 57-72
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From page 57... ...
This final chapter of the summary provides four perspectives on consumer engagement ranging from the national to the local level.
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The mission of PCORI is to help people make informed health care decisions and improve health care delivery and outcomes by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community. "The bottom line," said Beal, "is that the institute wants to support research that gives people the information that they need to make health care decisions that reflect their desired health outcomes." Beal told the story of her 83-year-old aunt who had lung cancer.
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Assessment of Prevention, Diagnosis, and Treatment Options • Comparing alternative clinical options to support personalized decision making and self-care • Identifying differences in patients' responses to therapy • Studying patients' preferences for various outcomes Improving Health Care Systems • Improving support of patient self-management • Focusing on coordination of care for complex conditions and improving access to care • Comparing alternative strategies for workforce deployment Communication and Dissemination Research • Understanding and enhancing shared decision making • Using alternative strategies for dissemination of evidence • Exploring opportunities to improve patient health literacy Addressing Disparities • Understanding differences in effectiveness across groups • Understanding differences in preferences across groups • Reducing disparities through the use of findings from patient centered outcomes research Accelerating Patient-Centered Outcomes Research and Methodological Research • Improving study designs and analytical methods in patient-centered outcomes research • Building and improving clinical data networks • Establishing methods for training researchers and patients to par ticipate in patient-centered outcomes research • Establishing a methodology for the study of rare diseases
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Beal grouped the first category of research priorities -- assessment of prevention, diagnosis, and treatment options -- with classic comparative effectiveness research and noted that this category represents about 40 percent of PCORI's budget. However, PCORI is also interested in ways to get the results of such research into practice quickly, because patients need answers right away.
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Again, said Beal, many more people have applied to work with the institute than it has been able to accommodate, adding that "we take a lot of pride in making sure that the perspective of the entire health care community is reflected." Every research project supported by PCORI must have a patient and stakeholder partner. The engagement of patients and stakeholders should include participation in the formulation of research questions; definition of the essential characteristics of study participants, comparators, and outcomes; monitoring of study conduct and progress; and dissemination of research results.
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Important considerations include speeding the implementation and use of patient-centered outcomes research; becoming a trusted source of information; and engaging stakeholders across the health care community to include PCORI research in training, practice, and standards. Most researchers do not have much experience with the dissemination and implementation of their research results, but PCORI is asking them to develop partnerships and take other steps to get the word out and ensure that research results have an impact.
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In particular, it works to advance state health policy solutions and to bring state and local voices into the national health care debate. Miller focused on three provisions related to community engagement that Community Catalyst sees to be critical to realizing the potential of the ACA: coverage expansion, delivery reform, and community benefits.
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From Urban Institute, Massachusetts Health Reform Survey, 2010. Figure 6-2 Bitmapped
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• Develop a disparities reduction and health equity policy agenda. • Hold meetings in target communities to increase understanding and participation.
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Experiments in places like New Jersey and Oregon have shown that health care reform can do much more to engage the community. In Oregon, for example, patients serve on the boards of coordinated care organizations as a means of increasing patient engagement.
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The ACA provides many tools to address disparities, Miller concluded, "but tools don't build houses; people do." Fulfilling the potential of the ACA will depend on the extent to which people take advantage of the opportunities that it presents. "If we are going to realize the health equity potential of the Affordable Care Act, it starts with getting states to take up the Medicaid expansion." -- Michael Miller
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A second leg consists of health care payers, who also are very well organized. The third leg consists of the consumers of health care, "who interact with this system while sitting in a medical examining room on an examining table in a paper gown waiting to get your blood pressure taken and knowing inevitably they're going to put you on the scale," she said.
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Getting people to actually understand what they're paying their hard-earned dollars for is a whole other ball of wax." Perhaps a useful analogy is car insurance, Lash continued, since everyone is supposed to have car insurance, but health insurance is still more complicated than car insurance. And people will not react calmly when something that they think is covered is not covered.
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She ended her comments by adding that "people need to realize that their voice matters." REACHING THE PEOPLE The Ashe Faith Project is a grassroots initiative of the Mount Aery Development Corporation whose goal is to close the health disparities gap in the Bridgeport, Connecticut, area by strengthening the partnerships between community and faith organizations and using knowledge, experience, and passion to maximize local synergies, collaboration, and service integration. "All that basically means," said Reverend Nancy KingwoodSmall, project director at the Ashe Faith Project, "is we are the little engine that could." The Ashe Faith Project, which has been funded by the Connecticut Health Foundation and the Substance Abuse and Mental Health Services Administration, has been presented to Congress as a model program that can be replicated throughout the country.
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Power Source also offers training on the ACA and on health disparities among black men. Similarly, the Ashe Faith Project offers advocacy training for women of color to help them become better advocates for themselves and their families.
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Participant Rebecca Skye from New Hampshire observed that she has concerns that states cannot effectively do community engagement with the limited funds available. Miller agreed that there is not adequate funding to support robust outreach and education efforts regarding enrollment.
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