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

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.

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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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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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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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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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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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.

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

-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

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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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

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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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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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 pdalrymple@drexel.edu