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About

Health literacy is the ability to find, understand and act on health information. It is dependent on the knowledge and skills of health professionals to communicate in ways people can understand and on the health knowledge and skills of patients and the public to make informed health decisions. 

Improving health literacy requires action from multiple sectors. Use education and resources to improve your knowledge and skills.
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Education + Resources

Modes of administration in validation study
How the validation study was administered (e.g., computer-based, face-to-face, paper and pencil, phone-based or mailed survey)
 

Categorical scoring (yes/no)
If the measure uses categories (e.g., low, medium or high) to categorize responses


Criterion validity: Concurrent
The extent to which the results from this tool correspond to results from other health literacy assessments done at the same time (i.e., how similar the results are)


Criterion validity: Predictive
The extent to which the results from this tool are associated with an independent defined outcome (i.e., how well the results can predict an outcome assessed at a later time)


Health literacy domains measured
Sub-categories of health literacy assessed by the measure (e.g., Prose: pronunciation, Prose: Comprehension, Document, Numeracy, Communication: Speaker, Communication: Listener, Information seeking: Interactive media navigation, Information seeking: Document or Application/function)


Measurement style
Whether the instrument items are designed in the style of TOFHLA (modified-Cloze test items in which a person selects the most logical word from a list of options to complete a sentence) or in the style of REALM (word pronunciation)
 

Objectively scored or self-reported assessment
Objectively scored measures assess demonstrated performance; self-reported measures capture subjective self-assessment
 

Reliability: Cronbach’s alpha
The extent to which there is internal consistency among the test items, expressed with an alpha
 

Reliability: Test-retest correlation
If applicable, percentage comparison between scores on measure from the initial to repeat administration
 

Sample size in validation study
Number of participants in validation study
 

Validation sample: Ethnicity
Percent Hispanic participants in validation study
 

Validation sample: Race
Percent white, Black and Asian participants in validation study. Note: in some instances, authors have not distinguished between Race and Ethnicity

The glossary includes vocabulary and terminology used to talk about features and aspects of the Health Literacy Tool Shed.

About

The Tool Shed is maintained by Tufts Medicine Center for Health Literacy Research & Practice at Tufts Medical Center. The Health Literacy Tool Shed was developed in collaboration with CommunicateHealth, Boston University, and RTI International. Funding was provided by the National Institutes of Health’s National Library of Medicine.

Welcome to the Health Literacy Tool Shed. This site contains information about measures, including their psychometric properties, based on a review of the peer-reviewed literature.
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Health Literacy Tool Shed

About

Causal models and frameworks help us understand how health literacy barriers translate to poor health outcomes.

Causal pathways linking health literacy to health outcomes

This is an evidence-based causal pathway model to explain well-established associations between limited health literacy and health outcomes.

Health literacy casual pathways diagram

Paasche-Orlow, MK, Wolf, MS. The Causal Pathways Linking Health Literacy to Health Outcomes. American Journal of Health Behavior 2007; 31(1): s19-s26. BMC public health, 12(1), 1.

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A framework for studying adolescent health literacy

This paper provides a justification of studying health literacy in adolescents and provides a framework and suggestions for future research.

Adolescent Health Literacy

Manganello, JA. Health literacy and adolescents: a framework and agenda for future research. Health Educ Res 2008; 23(5):840-7.

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Medical and public health views of health literacy

This model integrates medical and public health view of health literacy

Health literacy health views

Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H. (2012). Health literacy and public health: a systematic review and integration of definitions and models. BMC public health, 12(1), 1.

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A list of published models and frameworks linking health literacy to health outcomes.
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Published Models

About

Consider the following examples of other mediational analysis and how they may be applied within a health literacy context.

A selection of mediational analysis methods shedding light on the causal relationship between health literacy and health outcomes.
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Mediational Analysis

About

With increased availability of data, it is possible to examine in-depth the many proposed associations and pathways that may determine how low health literacy affects health outcomes.

Published Models

Mediational Analysis

Learn about conceptual models linking health literacy to health outcomes and how to test them.
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Refining Conceptual Models

Meeting the Challenges of COVID-19 by Expanding the Reach of Palliative Care: Proactive Advance Care Planning with Videos for the Elderly and all Patient with Dementia

Description
The majority of patients aged 65 or over, and patients with Alzheimer's Disease and Related Dementias (ADRD), have never communicated their preferences to clinicians or completed advance care planning (ACP) documents. The novel Coronavirus Disease 2019 (COVID-19) acutely escalated the importance of integrating ACP and palliative care services into medical care. We aimed to improve ACP with an ACP Educator who promote ACP conversations with certified video decision aids in a model of care that is practical, scalable, and evidence-based, has the potential to mitigate communication barriers related to health literacy and limited English proficiency, and has the potential to improve the quality of medical care delivery to millions of Americans during the COVID-19 pandemic.

Principal Investigators

Funding

  • May 2021 – April 2022
  • National Institute on Aging

Publications

 


 

Community-based Design and Evaluation of a Conversational Agent to Promote SARS-COV2 Vaccination in Black Churches

Description
We collaborated with the Black Ministerial Alliance TenPoint (BMATP) of Greater Boston to develop a smartphone-based Embodied Conversational Agent app that provides education about SARS-CoV-2 and influenza vaccination, and motivates vaccination completion, following public health guidelines. We evaluated the intervention in a clinical trial involving 600 congregants from 12 predominately African American churches.

Principal Investigators

Funding

  • April 2021 – January 2023
  • National Institute on Minority Health and Health Disparities

 


 

Testing a Medical Risk Communication and Surveillance Strategy: The EMC2Trial

Description
Nearly 10 million outpatient physician visits and 4 million emergency department admissions occur each year because of adverse drug events or serious drug side effects. A risk communication and surveillance strategy is needed in primary care to ensure that patients are adequately informed about medication risks and are taking high-risk drugs safely. In response, we assessed the effectiveness and fidelity of a primary-care based, technology-enabled strategy to improve patient-provider communication about drug risks, and to promote patient understanding and safe use.

Principal Investigators

Funding

  • August 2015 – May 2017
  • National Institute of Diabetes and Digestive and Kidney Diseases

Publications

A selection of past health literacy research initiatives.
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Completed Studies

Bickmore TW, Ólafsson S, O'Leary TK. Mitigating Patient and Consumer Safety Risks When Using Conversational Assistants for Medical Information: Exploratory Mixed Methods Experiment J Med Internet Res 2021;23(11):e30704. 

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Holland N. A Historical Overview of Language Access in Dentistry: The Impact of Language Access Protections on Oral Health Care Journal of the California Dental Association. 2021; 49(12):749-757). 

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Kurtz-Rossi S, Okonkwo IA, Chen Y, Duenas N, Bilodeau T, Rushforth A, and Klein A. Development of a new tool for writing research key information in plain language. HLRP, 2024:8(1):e29-e37. 

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Paasche-Orlow, MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, and Rudd RR. The Prevalence of Limited Health Literacy. J Gen Intern Med, 2005;(20):175-184.

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Paasche-Orlow MK. Health Communication: Not just Autonomy, Also Justice. The American Journal of Bioethics. 2017;17(11):49. 

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Paasche-Orlow MK, Schillinger D, Weiss BD, Bickmore T, Cabral H, Chang P, Bailey SC, Dewalt DA, Fernandez A, Fransen M, Leung A, McCaffery K, Meade CD, McCormack LA, Protheroe J, Parker R, Rothman R, Rubin D, Rudd R, Sørensen K, Von Wagner C, Wolf MS, Yin HS, Ownby RL. Health Literacy and Power. Health Lit Res Pract. 2018;15;2(3):e132-e133. 

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Quintiliani LM, Kamaka M, Henault L, Antonio MCK, Sentell T, Spencer K, Akaka G, Honda LK, Hanakeawe D, Dillard A, Kekauoha BP, Davis AD, Seitz R, Cabral HJ, Volandes A, Mala Mau MKL, Paasche-Orlow MK. I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations. Contemporary Clinical Trials, 2023 135:107365. 

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Volandes AE, Zupanc SN, Lakin JR, Cabral HJ, Burns EA, Carney MT, Lopez S, Itty J, Emmert K, Martin NJ, Cole T, Dobie A, Cucinotta T, Joel M, Caruso LB, Henault L, Dugas JN, Astone K, Winter M, Wang N, Davis AD, Garde C, Rodriguez PM, El-Jawahri A, Moseley ET, Das S, Sciacca K, Ramirez AM, Gromova V, Lambert S, Sanghani S, Lindvall C, Paasche-Orlow MK. Video Intervention and Goals-of-Care Documentation in Hospitalized Older Adults: The VIDEO-PCE Randomized Clinical Trial. JAMA Network Open. 2023 Sep 5;6(9):e2332556. 

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A list of selected publications
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Selected Publications

Improving Medical Decision Making for Older Patients with End State Renal Disease

Description
It is imperative to develop scalable and effective approaches to supporting persons with advanced kidney disease and their family caregivers. By providing video education tools to better inform persons making decisions about medical care and offering evidence-based options for kidney care, there is an opportunity to improve quality of life throughout the care trajectory.

Principal Investigators

Funding

  • April 2020 – present
  • National Institute on Aging
     

 

I Kua na’u “Let Me Carry Out Your Last Wishes” Advance Care Planning for Native Hawaiian Elders

Description
Despite the rapid expansion of advance care planning (ACP) services in the health care system, Native Hawaiians consistently have negligible rates of ACP and low use of palliative and hospice care services. To address these shortcomings, our multi-disciplinary community and research group has partnered together to create the I kua na'u "Let Me Carry Out Your Last Wishes" ACP video intervention.

Principal Investigators

Funding

  • May 2020 – present
  • National Institute of Nursing Research

 


 

Improving Patient Recorded Outcome (PRO) Interpretation at the Individual Level for Patients with Cancer using Conversational Agent and Data Visualization

Description
We will develop and evaluate an Embodied Conversational Agent – Patient-Reported Outcome (ECA-PRO) smartphone system that engages patients with interactive communication and empathy, while delivering standard PROs in a way that minimizes missing data and enables user- friendly visual sharing of results. The ECA-PRO system will create a strong foundation for PRO- based clinical decision-making. This novel system will be tested as a means to monitor symptoms and adverse events in patients with cancer receiving chemo- and/or radiation therapy, and to monitor medication adherence in patients taking oral medication for breast cancer.
 

Principal Investigators

Funding

  • March 2022 – present
  • National Cancer Institute

 


 

Advancing Medical Illustration in Patient Education Materials: From Art to Science

Description
We will study different kinds of medical illustrations used in patient education materials to understand the impact these have on patient understanding and anxiety. We will also develop a conversational agent that can explain patient education documents to people, and evaluate different versions of the agent in an experiment to determine which version leads to the most learning.
 

Principal Investigators

Funding

  • September 2023 – present
  • National Library of Medicine

 


 

A Mobile Relational Agent to Enhance Atrial Fibrillation Self-care

Description
Atrial fibrillation (AF) is a morbid condition with profound social and medical costs. The proposed research is relevant to public health by promoting self-care in individuals with AF. The project aims to improve patient- centered care in a vulnerable cohort of patients with AF as measured by quality of life, adherence to anticoagulation for stroke prevention and healthcare utilization.
 

Principal Investigators

Funding

  • April 2020 – present
  • National Heart Lung and Blood Institute
A list of current health literacy research initiatives.
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Funded Research

About

Center investigators have received over 60 million dollars in research and training grants from AHRQ, HRSA, NIC, NCI, NHLBI, NHGRI, NIA, NIDCR, NIMHD, NINR, NLM and NSF. 

Our research is interdisciplinary and uses a collaborate approach to engage communities to accelerate health literacy innovations and improve health outcomes.
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Research
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