An informatics perspective on health literacy

HEALTH LITERACYAn Informatics Perspective

Challenges and OpportunitiesPrudence Dalrymple, M.S., Ph.D., M.S., FMLA

Acknowledgements ■ Dr. Alla Keselman and Dr. Catherine Arnott Smith, editors of Meeting Health Information Needs Outside of Health Care for their foresight and mentorship

■ Catherine Gold and Elsevier for their invitation and hospitality here today

■ The many librarians, clinicians and public health professionals who will help bend the curve of health illiteracy in the U.S. today Renee Pokorny, Will Torrence,

Katie Dangerfield-Fries, Tony Luberti, Autumn McClintock, Barbara Cavanaugh

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Overview■ What are the best ways to help individuals become more literate

and more responsible for their health?■ What lessons can we learn from the information and informatics

communities that can be applied to health literacy research and practice?

■ What values and beliefs must we examine as we attempt to achieve a more health literate society?

■ What unique contributions are librarians making to improve health literacy?

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Obstacle: Many Definitions

■ Clinical medicine■ Public Health■ eHealth■ Library &

information science

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What Is Health Literacy?It Depends…..■ The degree to which individuals have the capacity to obtain,

process and understand basic health information and services needed to make appropriate health decisions [Institute of Medicine, 2004]

■ E-Literacy – the ability to seek, find, understand and appraise health information from electronic sources, and apply the knowledge gained to addressing or solving a health problem. Norman CD, Skinner HA. (2006) eHealth literacy: essential skills for consumer health in a networked world. JMIR 8: e9.

■ [Health] literacy is the product of individuals’ capacities AND the health literacy related demands and complexities of the healthcare system. Baker DW. The Meaning and the Measure of Health Literacy. J Gen Intern Med 2006; 21(8):878-883. 7

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�[J Med Internet Res. 2006]Norman CD, Skinner HA. J Med Internet Res. 2006 Nov 14; 8(4):e27. Epub 2006 Nov 14. eHeals scale published 2017 Stronger predictor of health than age, income, employment status, educational level or race. Rudd RE, Keller DB (2009) J Comm Healthcare 2:240-257

Obstacle: Multiple Research Communities

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■ Clinical medicine, nursing■ Public Health■ Communications, Education and

Information Science

Nutbeam’s Model:

Functional literacy which consists of reading, writing, and understanding

Communicative/interactive health literacy which consists of communication and social skills to derive meaning and to apply new information as situations change; and

Critical literacy, which consists of higher level skills needed to analyze and use information to exert control, over life events and situations, and make decisions

Ideally, health literacy supports patient autonomy and empowerment

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Nutbeam D. Health literacy as a public health goal: A challenge for contemporary health education andcommunication strategies into the 21st century. Health Promot Internation. 2000;15(3):259-67.

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Nutbeam proposes three levels of health literacy: 1) basic understanding or functional literacy which consists of reading, writing, and understanding; 2) communicative/interactive health literacy which consists of communication and social skills to derive meaning and to apply new information as situations change; and 3) critical literacy, which consists of higher-level cognitive and social skills needed to analyze information and to use it to exert control, over life events and situations, thus exercising autonomy and empowerment in health decision-making. Rather than focusing on the transmission of information from provider to patient in a clinical environment, Nutbeam argues for a broader, more complex understanding of health literacy that views health literacy as supporting greater patient autonomy and empowerment in health decision-making. [21]

HL as a Social Determinant of Health

11Sorensen K, et al. (2012) Health literacy and public health: a systematic review and integration fo defnitions and models,. BMC Public Health, 12(80)

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articles from domain medicine, medical, clinical heavily cites from one domain (health, nursing, medicine) See GREEN line connectithe two domains. On the other hand, health literacy articles from psychology, education, health cites from two separate domains (health, nursing, medicine AND psychology, education, social). SEE BLUE line drawing from two separate domains and converging. Discussion Health literacy literature spiked in 2008 and 2013corresponding to growth and diversity in the literature. As HL field expande to more disciplines. the number of publications and presumably the knowledge base, also grew dramatically. The two most prominent clusters are health literacy and health information. The more recent health information cluster correspoends to the introduction of communication and information sciences. (Literature moves from being very clinical and diseases or intervention specific to become more interdisciplinary and more focused on information and communications.} Also, communciatoin and informaotn literaures are broader in approach, and less cirucmacribed than the clinical literature. We also hypothesize that , research teams publishing in the medical domain may be comprised of clinical researchers and clinicians, whereas teams publishing in the social science, education domain may be more diverse and inclide BOTH clinicians and others outside the clinical domain. ,

Impact of Low Health Literacy

Patients with low HL have more … medical non-adherence, serious medication errors, difficulty navigating the health system, communicating with providers, chronic disease and mortality for themselves & their families, problems during transitions of care

Which results in …. lower patient engagement and costs as much as $236 billion annually

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ED visit, more hospitalization, fewer preventive screenings Cost estimate from Vernon JA Trujillo A, Rosernbaum SJ et al. Lowe health literacy: Implications for national health policy. Report, Department of Health Policy, School of Public Health and Health Services, The George Washington University, Washington, D.C., 2007.

U.S. Health Literacy36% of Americans are at or below basic HL*

Source: U.S. Department of Education, Institute of Education Sciences, 2003 National Assessment of Adult Literacy.

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Proficient: Use a table, calculate yearly cost of employer health insurance Intermediate--Read and understand prescription label, calculate timing Basic--Read a pamphlet, and understand benefits of screening Below Basic--Read short instructions, prepare for a medical test. Source: U.S. Department of Education, Institute of Education Sciences, 2003 National Assessment of Adult Literacy. �Note: Racial/ethnic categories are mutually exclusive; white, black, and other adults are not Hispanic

What Has Been Done to Help?■Assessment■Curated information■Public Health campaigns

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HL Assessment ToolsHelp for clinicians Handy tool for quick

assessment

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MedlinePlus

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Point out different types of materials, videos, etc.. Also available for mobile Also note that MedlinePlus includes materials from other organizations that have been selected for their credibility, clarity, utility for consumers. They are not necessarily scholarly, but they are accurate.

Questions Are the Answer

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Data

Introducing Informatics

Data, Data, Data

■ Health data is ubiquitous■ Health data is digital■ Health data can be organized, managed, analyzed,

visualized … and USED■ Data [usually] don’t lie ■ Data can drive decisions

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Make a Decision, Take an Action■ Harder, more important in today’s complex healthcare system■ Harness technology to support and guide decisions

■ For clinicians AND consumers

■ Health decisions happen anywhere, any time– Not limited to clinical encounter

■ Patients may want to make decisions outside the clinical context– Time is needed outside the moment to think through,

review information, and decide

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Digital Health Literacy: Actionable InterventionsEmbedding Information in Patient Portals

– Medline Connect■ Embedding HL Assessment in the Electronic Health Record

– Should be standard part of EHR (Healthy People 2020)– Self assessment of HL comparable to performance based

assessment ( Kiechle ES, JGIM 2015)■ Mobile apps

– iPrescribe– Text messaging at 11th Street

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Linking Information to Patient Portal

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Often marketed to physicians and hospitals to reduce office calls, meet Meaningful Use guidelines, market the practice, etc. Health Promot Pract. 2016 May 17. pii: 1524839916643703. [Epub ahead of print] Measuring Health Literacy Levels of a Patient Portal Using the CDC's Clear Communication Index. Alpert JM1, Desens L2, Krist AH3, Aycock RA3, Kreps GL2. Author information Abstract Once promised to revolutionize health care, patient portals have yet to fully achieve their potential of improving communication between patients and clinicians. In fact, their use can be detrimental to many consumers due to their limited literacy and numeracy skills. This study demonstrates how applying the Centers for Disease Control and Prevention's Clear Communication Index to a patient portal can be used to identify opportunities for better patient communication and engagement. The Clear Communication Index contains 20 scored items grounded in communication science to enhance patients' understanding of health information. The Index was applied to one portal used by over 80,000 patients in 12 primary care practices: MyPreventiveCare. This portal was selected because of its ability to personalize preventive and chronic care information by internally using content featuring health literacy principles and linking patients' externally to trusted materials. Thirty-seven frequently visited portal pages (17 internal and 20 external) were evaluated based on the Index's four main variables. The overall score for the portal was 72%, which falls below the 90% threshold to be considered clear communication. Internal content scored higher than external (75% vs. 69%). Specific changes to improve the score include simpler language, more specific examples, and clearer numerical explanations.

iPrescribe apps

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iPrescdibeapps will enable providers to “prescribe “ an app to their patients. An email wil be sent enableingthe patient to access the site. May nto always be free (drugs aren’t either) but apps will be vetted by phsycians from iMedicalAppsl

Currenlty in Beta test.

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iPrescripeApps will enable Providers to “prescribe” mobile apps to their patients. This raises interesting questions regarding vetting of quality, effectiveness, FDA regulation, access, and use, who will be able to prescribe them, where the data will go and who can access it.

Apps to Help Patients

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http://www.imedicalapps.com/

Informatics: A Team Sport■ Interdisciplinary■ Iterative■Collaborative

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Health Literacy and Informatics

■11th Street text messaging project■Needs assessment for patient portal■Decision Counseling for Cancer

Clinical Trial

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TAKING A CLOSER LOOK…

Philadelphia

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Highest poverty rate of 10 largest U.S. cities22% of adults lack basic literacy

Health literacy is even lower29

City of Contrasts

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Eds and meds 5 medical schools in Philadelphia 100 colleges & universities within 50 miles YET… 22% of Philadelphia adults have low health literacy Nearly a third of residents in Redding’s Frankford neighborhood live in poverty. The unemployment rate, 17.9 percent, is more than triple the national average, and 29.2 percent of residents over 25 haven’t graduated from high school.Al Jazeera America

-Children’s Hospital of Philadelphia (CHOP)

-Philadelphia Free Library-City of Philadelphia

-Philadelphia Department of Public Health

-Philadelphia Parks & Recreation

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South Philly Community Health and Literacy Center

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http://www.phillyvoice.com/chop-philadelphia-set-debut-trailblazing-community-health-and-literacy-center/

Free Library

150,000 “customers”Nurse on-site weeklyHealthy story time

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Health Center 2City of Philadelphia FQHCFull service adult healthcareDental services, family planningNutrition classes

CHOP Primary Care Center

Easy referral from M.D. to librarian35,000 year--a book each time! Stories, games, puppets, oh my!

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Talk about book shelves here

Adjacent Park & Rec Center

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Basketball courts, playground,garden, indoor programs, too

Collaborative Model

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Established early Public private partnership Monthly inter-disciplinary

meetings Location, location, location Opportunistic Clinician proximity for easy

referral Shared goals

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Why should clinicians buy ready-made patient ed stuff when they can get it from their own staff? OR why NOT buy ready-made stuff and spend energy on something else? Some M.D.s (primary care) very interested in health literacy and providing information, will happily cede some of that responsibility to those who are trained—NOT to an ill-trained staff member, but one who has the background and expertise, and interest in doing this Information prescriptions can be facilitated by the proximity to the library, or now, since we have internet, can send them directly to the patient Patient portal facilitated clinician-patient communication and information—

University of Pennsylvania Libraries Community Outreach

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UPenn Libraries Community Outreach

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Biomedical Library, Philadelphia Free Library (3 branches)UPenn School of Nursing Sayre Health Clinic (FQHC)City of Philadelphia Health ClinicNetter Center for Community PartnershipsMid-Atlantic Region NN/LM

UPenn Community Outreach Locations

Cobbs Creek Library Free Library Branch

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Lessons Learned

■ Anonymity & flexibility—reluctant to “enter the room” for a class or deeper discussion

■ Needs assessment■ Usability, HL in small bits and bytes■ Citizenship classes very successful■ Flexible space, jazz concerts, health fairs, active events■ 1/3 of library users ask health questions■ Integrate health into other library activities ■ http://www.webjunction.org/explore-topics/ehealth/news.html

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http://www.webjunction.org/explore-topics/ehealth/news.html

Ideas & Opportunities■ Collaboration across disciplines, across agencies, across time and space?■ Lend stuff, too—BP cuffs, pedometers…■ Locations & linkages

– Telehealth sessions from the library– Health librarian on call from clinic, information and referral from library– BP, flu vaccine, nurse in library

■ Digital information hub – How to use your patient portal, collect and add data, personal data management

■ Understanding and improving health – Exercise classes, yoga, books and puppets, games and exercise in the clinic– Kitchens for nutrition, numeracy & literacy

■ New skills– Safety net skills training for librarians– Information literacy skills for health professionals

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Tips for Success■ Many hands make light work—team science, many

disciplines working together, talking together, and collaborating.

■ Having separate communities of practice that don’t talk to each other is not a good use of resources.

■ Knowing what each of us is good at, and iterate until it’s right

■ Evaluate!■ Understanding quality information, understanding your

own health

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Improving Health Literacy Is

Affordable Pragmatic Enhances social welfare Has a moderate influence on health outcomes Contested intellectual territory

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A portfolio of pragmatic and affordable strategies for healthcare organizations, especially if they are intertsted in enhancing social welfare in addition to improving individual and overall health-care organizational outcomes From Logan, R. Health literacy research’s growth, challenges and outcomes. Meeting health information needs outside of healthcare

Staking a Claim

■Accessibility experts■Connectors■Subject specialists■Collaborators■ Imaginative

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As Promised--■ What are the best ways to help individuals become more

literate and more responsible for their health?■ What lessons can we learn from the information and

informatics communities that can be applied to health literacy research and practice?

■ What values and beliefs must we examine as we attempt to achieve a more health literate society?

■ What unique contributions are librarians making to improve health literacy?

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Let’s begin the conversation…..

For additional information or to make comments,please feel free to contact me at [email protected]