Relevance of Health Literacy to Precision Medicine Proceedings of a Workshop (2016) / Chapter Skim
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7 Reflections on the Day
7 Reflections on the Day
Pages 77-82
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From page 77... ...
She said that she worries that the information people receive from genomic sequencing could lead to an increase in unnecessary health care as people learn they are at risk for some condition and feel the need to do something about it without understanding the context or size of that risk. "I think the discussion has raised a number of health literacy questions about responsible discovery," she said.
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From page 78... ...
and health literacy and reiterated the importance and challenge of building trust and understanding among populations and subpopulations that have been historically disadvantaged and underserved by the health care system. The importance of Easter's emphasis on getting boots on the ground now cannot be overstated, Willis said, nor can the issue of affordability and the cost to health care providers of providing health-literate information.
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From page 79... ...
We heard a little about the engagement or participation model, less about the contextual model, and nothing about what the public communication field would call the lay expertise model that values the expertise the public brings to the process." He said he wondered if precision medicine, by valuing different sources of expertise, will change health literacy more than health literacy influences precision medicine. He also said that to be successful, health literacy will need to be better at identifying which approaches work for which people.
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From page 80... ...
In her opinion, she said, the PMI challenges the health literacy community to be more agile in its thinking and to consider working with new types of partners outside of the health care enterprise that have done a better job engaging, empowering, and educating their constituents. Parnell also said she was concerned about the information overload that the PMI may place on patients, adding that it will be important to keep that concern in the forefront as the field moves forward.
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From page 81... ...
Another voice missing from the day's conversations was that of patient advocates, said Laurie Myers, who pointed out that there was not a single speaker or moderator who did not have an advanced degree. She said that it will important to consider from a patient's perspective what genetic information will mean to that patient's family and how children and adolescents will have different opinions than adults or a health care providers about what information they want to know.
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From page 82... ...
"What needs to be in place so that all of the people who receive this information or participate in the PMI can be appropriately supported in a health-literate way where they receive their health care day in and day out? " Answering these questions, she said, will require focusing on the patient, not the data or the disease.
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