Relevance of Health Literacy to Precision Medicine Proceedings of a Workshop (2016) / Chapter Skim
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6 Communicating with the Public
6 Communicating with the Public
Pages 61-76
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From page 61... ...
Jennifer Dillaha, the medical director for immunizations and the medical advisor for health literacy and communication at the Arkansas Department of Health, and Carla Easter, the chief of the Education and Community Involvement Branch of the National Human Genome Research Institute (NHGRI) , then provided their reactions to the two presentations, and Catina O'Leary, the president and chief executive officer of Health Literacy Missouri, moderated an open discussion following the reactors' comments.
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From page 62... ...
Her first step to meeting that challenge was to develop her own literacy by attending the Summer Genetics Institute, a 2-month laboratoryand classroom-based course offered by the National Institute of Nursing Research. This experience, Hickey said, allowed her to learn the language and then be able to read and understand the growing literature concerning genetic testing and communicate that information to patients and families in clear and concise language.
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From page 63... ...
. As their colleagues in other fields had done, the advanced practice nurses concluded that there is a need for genomic health literacy resources that are appropriate for people from diverse socioeconomic and cultural backgrounds.
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From page 64... ...
Genetically trained professionals, Hickey said, are instrumental in taking comprehensive four-generation family pedigrees, ordering diagnostic testing, recognizing "red flags" and phenotypes of various genetic conditions, providing counseling and education, and supporting patients and families. From her experience working with genetic counselors as part of a health care team, Hickey has learned how important it is to put genomics into a context that is meaningful to the patient and to do so long before delivering the results of any tests.
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From page 65... ...
Hickey's said that her goal is to expand AFIB Town to include genomic information in the future and to make it possible for a clinician to access a patient's information, including life history, medications, and symptoms, prior to meeting with the patient. Her hope, she said, is that similar types of portals could be developed as places where a clinician would create a precision or personalized care roadmap that would enable two-way communication between the clinician and the patient.
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From page 66... ...
Gunter said that, to her, an equally important part of the effort to develop standards was to get the word out about this paper and to stimulate discussion, so the group published in a multidisciplinary journal and used social media to publicize the paper, including Twitter and various blogs at NHGRI, the Simons Foundation for Autism Research, and a genome community called Genomes Unzipped, and they also worked with their own institutions to generate web articles. "This is the kind of action I 2 This section is based on the presentation by Chris Gunter, director of communication operations at the Children's Health Care of Atlanta's Marcus Autism Center, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 67... ...
Prior to the advent of social media, mass communications researchers proposed a theory that the mass media disseminated important messages through a two-step process in which opinion leaders served as the conduit to individuals (Katz and Lazarsfeld, 1955)
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From page 68... ...
"We have to talk about our work and the challenges that are involved." To illustrate some of the challenges that clinicians face in using social media to disseminate information, Gunter discussed the Simons Foundation for Autism Research VIP Connect Project, which in 2015 created autism resources specific to different genetic variants linked to autism. The project
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From page 69... ...
While all of this is great in theory, Gunter said, in practice the only people posting so far on the public Facebook page are people from the Simons Foundation, which FIGURE 6-2 A webpage with links to resources related to a specific gene variant associated with autism. SOURCE: Gunter slide 18.
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From page 70... ...
3 This section is based on the comments by Jennifer Dillaha, the medical director for im munizations and medical advisor for health literacy and communication at the Arkansas Department of Health, and Carla Easter, the chief of the Education and Community Involvement Branch of the National Human Genome Research Institute, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 71... ...
In particular, Easter stressed the importance of engaging communities and easing their concerns that precision medicine is the new eugenics or a means of singling out individuals as being different from the community. "We tend not to think much about this as scientists," she said, "but for some communities this is very much in the forefront." Easter said she strongly supported the idea of using social media not only as a means of communicating information and building support for the PMI, but also as a means of recruitment to the PMI Cohort.
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From page 72... ...
Easter also questioned if there are things the PMI could learn from other large initiatives, such as the ongoing BRAIN initiative, about using social media and other avenues to connect with multiple audiences and communities. DISCUSSION Catina O'Leary started the discussion by pointing out that there is difference between writing a research paper and sending out thoughtful tweets and perhaps responding to tweets in a thoughtful, productive manner.
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From page 73... ...
Dillaha cautioned that the goal is to exchange factual information, and social media is not always a source of factual information. Wilma Alvarado-Little asked the panelists for any guidance they could share on how to have a conversation with an individual who is the first person in a family to have a genomics-based diagnosis.
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From page 74... ...
Rosof agreed and said that to overcome the fear of vaccination, the autism center at his institution had to go into the community, visiting churches and community centers and disseminating health-literate information. Using social media was not enough to get factual information into all areas of the community, he said.
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From page 75... ...
Gunter responded that she was an editor of a blog called Double X Science, which had the goal of writing about hard science topics at the level of the stories in magazines such as Glamour and Elle, and one of the blog entries she wrote explained the implications of the Supreme Court's decision on BRCA1 testing. Writing for these types of publications and social media outlets requires balancing accuracy and completeness while still getting across a great deal of information, she said.
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