Integrating Research and Practice: Health System Leaders Working Toward High-Value Care: Workshop Summary by Joe Alper

Author:Joe Alper
Language: eng
Format: epub
Publisher: The National Academies Press
Published: 2015-03-12T00:00:00+00:00

PATIENT ENGAGEMENT

In the session’s final presentation, Bray Patrick-Lake said that patients dream of a high-quality health care system that is patient-centered and efficient and that enables reliable and timely access to evidence-based prevention and treatment options that are responsive to individual patient needs. Moreover, she said, while the current health care system is not operating optimally for anyone, she believes that it is possible to create just such a system if everyone can come together to work on the issues that this workshop has identified: inefficient use of resources, siloed data that could be used to improve care on a daily basis, research that never filters back to patients, and lack of transparency when it comes to value and outcomes. She noted, too, the lack of any kind of useful information or data for many conditions and the fact that many guidelines are not based on evidence that patients might find to be reasonable.

Patrick-Lake said that the field needs to get smarter about the data it collects and how it explains those data to patients. “Can we identify elements that actually make a difference to patients and help physicians improve care?” she asked. “We have got to get smarter about making data work for us.” When the clinical community fails to provide patients with the information they need, patients go and create their own opportunities, particularly by using social media such as Facebook. “There are now 7,000 patient groups in this country, and I’m not sure we need any more,” she said. “But every time a patient steps forward and they don’t get what they need, they’re still going to try to get answers for themselves and for their children. And so we really need to figure out how we integrate people and help them get what they need out of the system, so we can stop going off and creating all of these different siloed activities.”

Another thing that is happening, she said, is that patients are getting more involved in the research endeavor and are experiencing many of the same frustrations that clinicians and researchers face in dealing with IRBs and contracting offices. Patients, she continued, are becoming results-oriented, demanding more from the system, and in some cases taking control of the system. In her role with the Clinical Trials Transformation Initiative, an FDA-driven public–private partnership to improve the quality and speed of clinical trials, she harnesses the energy of patients to work with all of the stakeholders to produce systemic change.

Patrick-Lake noted that one way in which patients are driving this change is through the PPRNs that have been forming. These networks include people who have backgrounds in statistics and information technology and who are taking data and making it work for patients. These networks are creating benchmarks for patients so that they can see how they are doing compared to other patients. They are creating forums for real-world populations of patients to compare medication regimens and exchange other relevant information that they feel they are not getting from the clinical community.

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