Health Literacy In The Digital Age: Applications To Genomics
Health Literacy in theDigital Age:Applications to GenomicsMarleah Dean Kruzel, PhD and Sue Friedman, DVM
DisclosuresThis work is supported by the Center for Disease Control and Prevention (CDC-RFA-DP19-1906).Opinions expressed by presenters are their own.
ObjectivesBy the end of this presentation, you will be able to:1.Define health literacy and digital health literacy.2.Discuss the impact of online health information on healthcare.3.Describe how social determinants of health, culture, and personal beliefs may influence howpatients interpret and act on genomic health information.4.List the challenges faced by patients in evaluating digital health information on genomics.5.Outline how media coverage affects patient understanding of cancer genetics and medical decision-making.6.Discuss tips and resources for communicating about online health information and media reports.
“I did not understand anyof my test results, despiteasking my doctor toexplain on more than oneoccasion.” – PatientSurvey RespondentHealth Literacy &Digital Health Literacy
Health Literacy Personal Health Literacy: The degree towhich individuals have the ability tofind, understand, and use informationand services to inform health-relateddecisions and actions for themselvesand others.1 Organizational Health Literacy: Thedegree to which organizations equitablyenable individuals to find, understand,and use information and services toinform health-related decisions andactions for themselves and others. 11. What is Health Literacy? CDC
Digital Health Literacy or eHealth Literacy An individual's ability to seek, understand and assess electronic healthinformation and apply the knowledge gained to address a health issue orproblem.2,32. Novillo Ortiz, D. 2017. Digital Health Literacy. WHO.3. Norman, C.D. & Skinner, H.A. 2006. eHealth Literacy: Essential Skills forConsumer Health in a Networked World. J Med Internet Res, 8(2), e-9.
Health Information Is Filtered Through Personal Lens4Dis/Trust in MedicineIdentity and ExperiencesDiagnosis and t-treating-symptomscan-help-366216Perception of digitalhealth informationmay be affected by: age gender diagnosis & stage personalexperiences belief system culturalperspective source ofinformation socialdeterminants ofhealth4. Jacobs W, Amuta AO, Jeon KC. Healthinformation seeking in the digital age:An analysis of health informationseeking behavior among US adults.Cogent Social 17.1302785
“The COVID 19 pandemicdemonstrates that lack ofBroadband Internet Accessinfluences each of the. socialdeterminants of health.” –Benda et al. (2020, p. 1123)Social Determinants of Health &Digital Health Literacy
Social Determinants of Health5 & Digital Health Literacy2,3Digital Health LiteracyEducationAccess & QualityHealthcareAccess & QualityEconomicStabilityNeighborhoodand BuiltEnvironmentSocial and Community Context5. Healthy People 2030, U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Retrieved11/11/2020, from ta/social-determinants-health
Neighborhood and Built Environment6. Wheeler T. May 27, 2020. Brookings. the-internet-to-all-americans/
“Genetics may holdspecial allure andgenerate new groups ofhealth informationseekers.” – McBride etal., 2009, p. 585Online Health Information &Genomics
The Internet and Health The Internet and social media provide a unique opportunity for individualsto access health information,7-10 enhancing health-promoting behaviors.11Clinicians are concerned aboutthe online information’s12-13:Patients report onlinehealth information to be12: Inaccurate/falseMisleading information Quality CredibilityThe Internet is creating inequalities for accessing health information.13-15
Example: Genetics and Cancer Image: NHGRI Image: Michigan Health LabIndividuals use the Internet and social media tolearn about and discuss information aboutgenetics and genomics.7Up to 90% of individuals with canceruse online resources to access information aboutcancer,16 particularly breast cancer patients.17For example, in one study, 46.5% of patients lookfirst to the Internet for information about cancergenetics, disease, and genetic testing.18Yet, patients have concerns about credibility,accuracy, trust, and privacy.19
“As a student with goodhealth literacy, it’s easy toforget how people mayperceive misinformation onthe Internet.” – Geneticcounseling studentChallenges ofOnline Health Information
Traps of Online Information Majority of patients use online resources to access informationabout cancer.16 Challenges exist for those who do.20-22Digital healthinformation may be: contradictory extensive sensationalized inaccurate lacking expertreview lacking context jargon-filled locked behind apaywall retargeted16. Tennant et al. J Med Internet Res2015;17(3):e70).20.Sommerhalder et al. Pat Edu &Counsel 2009; 77(2): 266.21 Jiang S, Liu PL Psycho‐Oncology.2020;29(1):61-6722. Lee K, Hoti K, Hughes JD, EmmertonL. J Med Internet Res. 2014;16(12):e262
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8) Targeted and Retargetedhttps://www.youtube.com/watch?v n-health.html
“There is so much toxicdisinformation in theworld of hereditarycancer. FORCE’s XRAYprogram is an antidote.”– FORCE volunteerFORCE eXamining theRelevance of Articles for You(XRAY) Program
XRAY ProgramXRAY was supported by theCooperative AgreementNumber: 5NU01DP00540404-00, funded by theCenters for Disease Controland Prevention.FacingOurRisk.org/XRAY23. FORCE XRAY Program microsite: https://www.facingourrisk.org/XRAY
Scientific ReportMedia e25465
XRAY Summary and Relevance -and-metastasisKey components ofXRAY reviewsinclude: plain languagesummary clinical relevancescores expert guidelines question prompts links to relatedclinical trials ratings of theaccuracy of themedia coverage links to relatedresources andreferences printer-friendlyversions
Scientific C6181777 /Media -science-say-that-was-a-mistake
XRAY ing-uncertain-variants
Scientific ReportMedia ticle/PIIS1470-2045(17)30891-4/fulltext" [1/12/2018] GreenMedInfo LLC. This work is reproduced and distributed withthe permission of GreenMedInfo LLC. Want to learn more from GreenMedInfo? Signup for the newsletter here //www.greenmedinfo.com/greenmed/newsletter."
XRAY Summary and Relevance mutation-statusKey components ofXRAY reviewsinclude: plain languagesummary clinical relevancescores expert guidelines question prompts links to relatedclinical trials ratings of theaccuracy of themedia coverage links to relatedresources andreferences printer-friendlyversions
Expert Guidelines, Clinical Trials & Question Prompts
Rating the Media Coverage of the Science
Printer-Friendly Version
XRAY and COVID-19Hi! In many facebook groups for people with mutations, there areseveral people worried that the Covid 19 mRNA vaccine is going tomess with our DNA and make it worse for those of us with cancermutations. Is there a way FORCE can do some webinars with vaccinedoctors to explain mRNA and do some graphics and public health infowe can share on these groups from you all to stop this misinformation?– Request from FORCE www.youtube.com/watch?v S69oj8FKGok
”I see how people get scaredwhen research is taken out ofcontext. These tools will helpme empower patients to maketheir own decisions aboutinformation they find in themedia.” –Genetic counselingstudentTips & Resources
General Strategies & Techniques to Improve Health Literacy Create awareness abouthealth literacy Use plain language24 Apply concepts of“Teach-back”25 Apply the concept of“Ask Me 3”26Institute for Healthcare Advancement: https://iha4health.org/24. Source: PlainLanguage.gov25. Source: Agency for Health Research and Quality. .pdf26. Source: Institute for Healthcare Improvement. Good-Questions-for-Your-Good-Health.aspx
Ask Me 326 Encourages patients to make surethat they have the answer to threequestions before leaving theirdoctors office: What is my main problem? What do I need to do now? Why is it important for me to dothis?26. Source: Institute for Healthcare Improvement. Good-Questions-for-Your-GoodHealth.aspx
“XRAY Vision”CHECK information before passingon to others!SourceContentContext & Relevance
.gov are governmentagencies Very reliable CDC, NIH, NCICheck the Source.edu are academicinstitutions anduniversities Reliable Watch for pressreleaseshttps://www.cancer.gov/.org are non-profitorganizations What is their mission? Who are their advisorsand board members?.com are commercial,for-profit companies What is their business? Who are the owners orgoverning bodies? Are they sellingproducts?https://cancer.ufl.edu/
Check the Source - NewsGuard.gov are governmentagencies Very reliable CDC, NIH, NCI.edu are academicinstitutions anduniversities Reliable Watch for pressreleases.org are non-profitorganizations What is their mission? Who are their advisorsand board members?.com are commercial,for-profit companies What is their business? Who are the owners orgoverning bodies? Are they sellingproducts?
Check the vidence-new-scandal-emerging.htmlCheck thecontent: Is it current? Is it neutral? Look for termslike“miraculous,”and “cure.” Look forconspiracytheories Are expertsquoted? Are the expertslegitimate? Are the statisticsclear? Does the contentmake sense?
Confirm Before Sharing!Check thecontent: Is the citedauthority a realperson? What are theircredentials? Who began thechain? Did this come froman academicinstitution? Is the content onthe institution’swebsite? Check factchecker websiteslike Snopes.com.
Confirm Before Sharing! SnopesCheck thecontent: Is the citedauthority a realperson? What are theircredentials? Who began thechain? Did this come froman academicinstitution? Is the content onthe institution’swebsite? Check factchecker websiteslike Snopes.com.
Check the lp-beatcancer-9549506Research clinicalrelevance: Was this humanresearch? How many peoplewere studied? What phase/howlarge was thestudy? Were participantsrepresentative ofthe patientpopulation? Were the resultspeer reviewed? Do the resultsaffect clinical careor outcomes?
Discerning Media and -gland-cancer n 5901542Results: The observed rate of 3 of 5754 cases(0.052%) of head and neck cancers in BRCApositive probands and likely carriers is significantlyhigher than the background incidence rate of 3 of100 000 (0.003%) per year (P ngology/fullarticle/1906230
Take Home Messages
Take Home MessagesHealth literacy is an important component of health communication.We can all play a role in improving health literacy.There are features unique to digital health information that makes itparticularly challenging for patients to navigate. These featuresfacilitate the wide and rapid spreading of misinformation.There are tools and resources available to help empower patients toimprove their health literacy.
7.18.19.20.21.22.23.24.25.26.CDC website: What is health literacy: l.Novillo Ortiz D, (WHO) 2017. Digital health literacy.Norman, C.D. & Skinner, H.A. 2006. eHealth Literacy: Essential Skills for Consumer Health in a Networked World. J Med Internet Res, 8(2), e-9.Jacobs W, Amuta AO, Jeon KC. Health information seeking in the digital age: An analysis of health information seeking behavior among US adults. Cogent Social Sciences.2017;3(1):1302785. doi:10.1080/23311886.2017.1302785Healthy People 2030, U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Retrieved 11/11/2020, d-data/social-determinants-healthWheeler T. May 27, 2020. Brookings. the-internet-to-all-americans/Allen, C.G., Andersen, B., Khoury, M.J. and Roberts, M.C., 2018. Current social media conversations about genetics and genomics in health: a twitter-based analysis. Publichealth genomics, 21(1-2), pp.93-99.Sommerhalder, K., Abraham, A., Zufferey, M.C., Barth, J. and Abel, T., 2009. Internet information and medical consultations: experiences from patients’ and physicians’perspectives. Patient education and counseling, 77(2), pp.266-271.Bylund, C.L., Gueguen, J.A., Sabee, C.M., Imes, R.S., Li, Y. and Sanford, A.A., 2007. Provider–patient dialogue about Internet health information: an exploration of strategiesto improve the provider–patient relationship. Patient education and counseling, 66(3), pp.346-352.Bowes, P., Stevenson, F., Ahluwalia, S. and Murray, E., 2012. ‘I need her to be a doctor’: Patients’ experiences of presenting health information from the internet in GPconsultations. British Journal of General Practice, 62(604), pp.e732-e738.Norman, G.J., Zabinski, M.F., Adams, M.A., Rosenberg, D.E., Yaroch, A.L. and Atienza, A.A., 2007. A review of eHealth interventions for physical activity and dietary behaviorchange. American journal of preventive medicine, 33(4), pp.336-345.Levy, J. A., & Strombeck, R. (2002). Health benefits and risks of the Internet. Journal of Medical Systems, 26, 495–510.Imes, R.S., Bylund, C.L., Sabee, C.M., Routsong, T.R. and Sanford, A.A., 2008. Patients' reasons for refraining from discussing internet health information with their healthcareproviders. Health communication, 23(6), pp.538-547.Lorence D, Park H. Group disparities and health information: a study of online access for the underserved. Health Informatics J 2008;14:29–38.Jacobs, W., Amuta, A.O. and Jeon, K.C., 2017. Health information seeking in the digital age: An analysis of health information seeking behavior among US adults. CogentSocial Sciences, 3(1), p.1302785.Tennant B, Stellefson M, Dodd V, et al. eHealth Literacy and Web 2.0 Health Information Seeking Behaviors Among Baby Boomers and Older Adults. Journal of MedicalInternet Research. 2015;17(3):e70. doi:10.2196/jmir.3992Kowalski, C., Kahana, E., Kuhr, K., Ansmann, L. and Pfaff, H., 2014. Changes over time in the utilization of disease-related Internet information in newly diagnosed breastcancer patients 2007 to 2013. Journal of medical Internet research, 16(8), p.e195.Case, D.O., Johnson, J.D., Andrews, J.E., Allard, S.L. and Kelly, K.M., 2004. From two‐step flow to the Internet: The changing array of sources for genetics informationseeking. Journal of the American Society for Information Science and Technology, 55(8), pp.660-669.Bernhardt, J.M., Lariscy, R.A.W., Parrott, R.L., Silk, K.J. and Felter, E.M., 2002. Perceived barriers to Internet-based health communication on human genetics. Journal ofhealth communication, 7(4), pp.325-340.Sommerhalder et al. Pat Edu & Counsel 2009; 77(2): 266.Jiang S, Liu PL Psycho‐Oncology. 2020;29(1):61-67Lee K, Hoti K, Hughes JD, Emmerton L. J Med Internet Res. 2014;16(12):e262FORCE XRAY Program microsite: vAgency for Health Research and Quality. .pdfInstitute for Healthcare Improvement. Good-Questions-for-Your-Good-Health.aspx
Thank You to Our Partners Academy of Oncology Nurse &Patient NavigatorsAlejandra de Mendoza, PhDAllison Kurian, MDAsian Pacific Partners forEmpowerment; Advocacy, &LeadershipBarbara Segarra-Vasquez,DHSc/Univ. PRBeautiful GateBreast Cancer Resource CenterCURE/Oncology Nursing NewsDeb Duquette, CGCDebbie SetuainEileen KasturaFlorida Breast Cancer FoundationFor The Breast of UsGeographic Health EquityAlliance Ghecemy Lopez, MAEdGulf State YBCS NetworkJennifer Klemp, PhDJohns HopkinsLatinaSHARELaura Guyer, PhDLisa Rezende, PhDLiving Beyond Breast CancerLouisiana Public Health InstituteLourdes Baezconde-Garbanati,PhD, MPHMetastatic Breast CancerAllianceMetastatic Breast CancerNetworkMETAvivorMichigan Department HHS National African American TobaccoPrevention NetworkNational Alliance for HispanicHealthNational LGBT Cancer NetworkNat'l Society of Genetic CounselorsSanford HealthSelfMade Health NetworkSharsheretSusan G. KomenSusan Vadaparampil, PhDTigerlily FoundationThomas Jefferson UniversityTouch: The Black Breast CancerAllianceUniversity of Illinois, ChicagoUtah Department of HealthYoung Survival Coalition
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Digital Health Literacy or eHealth Literacy An individual's ability to seek, understand and assess electronic health information and apply the knowledge gained to address a health issue or problem.2,3 2. Novillo Ortiz, D. 2017. Digital Health Literacy. WHO. 3. Norman, C.D. & Skinner, H.A. 2006. eHealth Literacy: Essential Skills for
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