Protocol - Health Literacy

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Description

The protocol includes three items designed to assess an English-speaking adult‘s ability to read and understand medical forms and materials. These questions could help health professionals understand the adult‘s health literacy and are based on the Brief Health Literacy Survey (BHLS).

Specific Instructions

None

Availability

This protocol is freely available; permission not required for use.

Protocol

1. How confident are you filling out medical forms by yourself?

[ ] Extremely

[ ] Quite a bit

[ ] Somewhat

[ ] A little bit

[ ] Not at all

2. How often do you have someone help you read health-related materials?

[ ] Always

[ ] Often

[ ] Sometimes

[ ] Occasionally

[ ] Never

3. How often do you have problems learning about your medical condition because of difficulty understanding written information?

[ ] Always

[ ] Often

[ ] Sometimes

[ ] Occasionally

[ ] Never

Personnel and Training Required
None
Equipment Needs
PhenX acknowledges that these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The individual will require a laptop computer or handheld computer to respond to a computer-assisted questionnaire.
Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adult, Senior, Pregnancy

Participants

Adults

Selection Rationale

This protocol was selected because of its good reliability and validity, ease of administration, and use by the All of Us Research Program.

Language

English, Spanish

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

The PhenX Steering Committee reviewed this protocol in April 2025. Guidance from Steering Committee includes:

  • Replaced protocol
  • New Data Dictionary

Protocol Name from Source

All of Us Research Program, Participant Provided Information (PPI), 2017

Source
All of Us — Participant Provided Information — Overall Health (this version was approved by the Institutional Review Board on May 20, 2017)
General References

Sand-Jecklin, K., & Coyle, S. (2014). Brief Health Literacy Screen (BHLS) [Database record]. APA PsycTests. https://doi.org/10.1037/t37729-000

Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med. 2004 Sep;36(8):588-94. PMID: 15343421.

Osborn, C. Y., Wallston, K. A., Shpigel, A., Cavanaugh, K., Kripalani, S., & Rothman, R. L. (2013). Development and validation of the General Health Numeracy Test (GHNT). Patient education and counseling, 91(3), 350-356.

Sarkar, U., Schillinger, D., López, A., & Sudore, R. (2011). Validation of self-reported health literacy questions among diverse English and Spanish-speaking populations. Journal of general internal medicine, 26(3), 265-271.

Schillinger D1, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GD, Bindman AB. (2002). Association of health literacy with diabetes outcomes. JAMA, 288(4):475-82.

Protocol ID

270402

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX270402_Health_Literacy_Confidence_Completing
PX270402010000 How confident are you filling out medical more
forms by yourself? show less
N/A
PX270402_Health_Literacy_Difficulty_Understanding
PX270402030000 How often do you have problems learning more
about your medical condition because of difficulty understanding written information? show less
N/A
PX270402_Health_Literacy_Help_Reading
PX270402020000 How often do you have someone help you read more
health-related materials? show less
N/A
Demographics and Social Determinants of Health: Core
Measure Name

Health Literacy

Release Date

June 6, 2025

Definition

This questionnaire is used to assess an adult’s health literacy level, the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.

Purpose

This measure can be used to evaluate an individual’s health literacy level. Low health literacy is associated with not understanding health and disease information, difficulties following medical instructions and scheduling preventive and routine appointments, increased hospitalizations and medical costs, and ultimately higher mortality rates.

Keywords

All of Us Research Program, Health Literacy Screening, Social Determinants of Health, Understanding medical language, Medical information, Health information

Measure Protocols
Protocol ID Protocol Name
270402 Health Literacy