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3 The Intersection of Health Literacy and Precision Medicine
Pages 11-22

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From page 11...
... PRECISION MEDICINE AND ITS EVOLUTION1 NIH defines precision medicine as an emerging approach for disease treatment and prevention that accounts for individual variability in genes, environment, and lifestyle for each person, Van Driest said. While the words genes, environment, and lifestyle may be the buzzwords found in the press 1  This section is based on the presentation by Sara Van Driest, assistant professor of pediat rics at Vanderbilt University School of Medicine, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
From page 12...
... The goal today, she said, is to expand the number of diseases to which precision medicine is applicable, increase the number of physicians who practice precision medicine, and grow the number of patients who can benefit from this approach. While she quoted William Osler as saying, "It is much more important to know what sort of patient has a disease than what sort of disease a patient has," to show that the basic idea of precision medicine is more 100 years old, she credited NIH director Francis Collins for the current emphasis that precision medicine is now receiving.
From page 13...
... "The goal is to understand more of these molecular mechanisms so we can develop a curative therapy." Van Driest then turned to a third area of precision medicine -- precision prognostics. In the case of Francis Collins, he did not need tailored therapy for type 2 diabetes because he changed his behavior based on his genetic predisposition in order to prevent the disease from developing in the first place.
From page 14...
... Precision medicine is being fueled by the emergence of new types of data that are broader and deeper in their information content, and the field needs to somehow layer those data in a way that allows them to be integrated and provide comprehensive recommendations that while still probabilistic, rather than deterministic, will contribute to longer, healthier lives. HEALTH LITERACY AND ITS EVOLUTION2 In 2000, Elwood said, health literacy was defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Ratzan and Parker, 2000)
From page 15...
... It involves myriad other issues such as knowing how to take a medication, how to be fit, how to monitor one's health on a smart phone, and how to use proper ventilation when cooking to avoid exposure to particulate matter and being able to discuss with a health care provider how the environmental effects of living near a freeway can effect personal health. Since 2004, OBSSR has led three special program announcements on understanding and promoting health literacy.
From page 16...
... THE PRECISION MEDICINE INITIATIVE AND WHY HEALTH LITERACY MATTERS3 There are multiple ways in which precision medicine and health literacy intersect, Wolf said. One relates to how the benefits of precision medicine will be realized in the clinical setting in the future.
From page 17...
... He said that while he is enthusiastic about the effect that health literacy can have on the PMI, he is realistic enough to recognize that there are challenges the field will face as it tries to impart what it has learned with the aim of providing value to the PMI and maintaining participation rates throughout the duration of the project. The PMI, explained Wolf, is asking the 1 million participants to agree to a long-term relationship, to undergo a research medical exam and prescription assessment, to have their blood drawn, to complete health surveys, to use and share environmental exposure and lifestyle information using mobile technology, and to share information in their electronic health record.
From page 18...
... With regard to psychometric tests, Wolf noted that the research field has begun to recognize that how someone responds to a health questionnaire depends on that person's health literacy. "What that means is that how someone with low health literacy understands and responds to a question may be vastly different than how a person with adequate health literacy skills responds to the same question," Wolf said.
From page 19...
... Joseph McInerney spoke about how genetics content relates to an ability to understand life, and Van Driest stressed that precision medicine requires probabilistic rather than deterministic thinking. Given what a big challenge numeracy is in the United States, Parker said she was concerned that many Americans will find probabilistic thinking, which carries the connotation of statistics and risk and probability, to be a significant challenge.
From page 20...
... Department of Health and Human Services asked when the PMI was going to start. Van Driest replied that the initial 1-year effort to develop pilot studies, communication tools, and recruitment strategies began in late February 2016.
From page 21...
... "There could be a fifth-generation descendant of Ashkenazi Jewish people who does not identify as Jewish at all, and yet it is through precision medicine that that person might get picked up as vulnerable to Tay-Sachs," Elwood said. "This is an example of gene– environment interaction in terms of the social environment and identity and part of what makes us uniquely American." Precision medicine, he added, can provide insightful data because ethnic and racial identity is such a fluid construct in the United States.
From page 22...
... McInerney did note, though, that the American Society of Human Genetics is working to educate health care professionals about better approaches to taking a family history and is also working with the insurance industry to promote the idea that primary care providers should be reimbursed for the time needed to take a good family history. "We know that most primary care providers are not going to take a three-generation family history the way a trained geneticist would," he said.


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