Integrating Large-Scale Genomic Information into Clinical Practice Workshop Summary (2012) / Chapter Skim
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5 The Delivery of Genomic Data
5 The Delivery of Genomic Data
Pages 39-46
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From page 39... ...
The actual delivery of that information to both the health care professional and the consumer is essential to improving outcomes. Will such information be delivered at the point of care or in some other setting?
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From page 40... ...
A new program known as PG4KDS has the goal of migrating a larger number of pharmacogenetic tests from the laboratory into routine patient care so that results are available for preemptive use. The primary program objective is to estimate the proportion of patients who have high-risk or actionable pharmacogenetic results entered in their EMR with decision support (automated information alerts generated to assist health care providers in making decisions about a patient's care)
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From page 41... ...
The study investigators, with the input of an oversight committee, decide how to update the information that is entered into the chart, including the addition of new clinically actionable variants and which results are designated to receive decision support, starting with widely accepted results for high-risk genotypes. "We won't tackle the most controversial ones until later, or maybe never.
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From page 42... ...
or not, and again that takes a high level of knowledge of the genes and the drugs." Using a software program called PHASE, a much higher percentage of diplotype assignments can be made non-ambiguous, but it is a judgment call as to whether to deliver that information to the clinician. Interpretation is complex and time consuming, and it changes over time, Relling observed.
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From page 43... ...
"That's about where health care data sharing is today." The first automated teller machines (ATMs) were introduced in 1967, but their use was limited until networks of ATMs enabled people to withdraw money from almost any machine.
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From page 44... ...
The centerpiece of the system is that patients log onto a secure website and set their own privacy preferences, after which researchers can search for information. For example, Shelton said, if a researcher is looking for subjects for a clinical trial, patients "need to have their hand raised for interest in clinical trials already." Private Access does not actually hold patient data.
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From page 45... ...
"We have to crawl before we walk," she said. "We have to get this to work in health care institutions where we have highly trained people and get it understood and adopted, and then we can maybe start pushing it out more to consumers." Shelton added that he did not expect consumers to have the ability to understand the data that they are receiving.
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From page 46... ...
If we ask for permission, empower it, and make it easy, it will happen." BUILDING A BUSINESS CASE FOR GENETIC TESTING Given the limited associations between genetic test results and most diseases, Shelton suggested that the business case for using health IT systems that incorporate genetic results rests on two motivations. The first is recruiting subjects for clinical trials.
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