Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary by Sarah H. Beachy

Author:Sarah H. Beachy
Language: eng
Format: epub
Tags: ebook, book
Publisher: The National Academies Press
Published: 2015-09-17T00:00:00+00:00

CREATING A SUPPORTIVE INFRASTRUCTURE

A learning health system aligns science and informatics, develops strong patient–clinician partnerships, provides incentives for innovation, and creates a culture of continuous improvement to produce the best care at the lowest cost, said Steve Leffler, the chief medical officer at The University of Vermont Medical Center and a professor of surgery at the University of Vermont College of Medicine. Each of these actions, in the context of genomic medicine, can be used with EHRs to advance health care.

EHRs will need to be optimized to use genomic information effectively, Leffler said. Given that patient charts can become overloaded with extra data, standardizing EHR displays can ensure that health care providers see important information. But, he added, too many alerts can be detrimental because they are eventually ignored.

To personalize care for patients, genomics needs to be incorporated seamlessly into the EHR, Leffler said, and the genomics information needs to be accurate if it is to be useful. Genomic data will be most useful in the background, where they will help providers make good decisions without distracting them from their jobs. Eventually, all health care providers will need to know how to use genomic information, but for now primary care providers who are not comfortable with genomic information can work with genetic counselors, geneticists, pathologists, and others who understand the the test results in order to make genetics-informed health care decisions, he said. Physicians who do not want to learn from computer screens while they are practicing are likely to see this type of expert advice–based learning as a welcome alternative, said Peterson.

Although specialists will be the more likely point of interaction with regard to genomics, Jarvik agreed that “every physician is going to need to become literate in genomic medicine. But we have a long way to go right now.” She cited the example of a patient informed of a warfarin sensitivity variant in a research study who was switched to a different drug by a physician. “This drug did not need to be changed as far as we know. We are interviewing the patient and the physician about this experience, and maybe there was some valid reason, but I’m concerned that there wasn’t.” Health care providers need training to be able to do phenotyping, to see the benefits of genomic information to patients, and to use the information in clinics, said Fowler. “There is a real dearth of skills in this particular area, and for us that’s a particular challenge.”

There are several barriers to the integration of genomics into the EHR, Leffler said. For example, determining a way to identify who will benefit in the initial stages of integration when not everyone can be included in such a system is a challenge, he said. “Are you going to focus on people who already have a disease, on their family members? Who is going to make those decisions before it’s universal?” Informed consent is another issue. Will everyone have to opt in or opt out? Will incidental findings be

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