Journal of General Internal Medicine

, Volume 34, Issue 4, pp 544–551 | Cite as

Association of Health Literacy and Numeracy with Interest in Research Participation

  • Sunil KripalaniEmail author
  • William J. Heerman
  • Niral J. Patel
  • Natalie Jackson
  • Kathryn Goggins
  • Russell L. Rothman
  • Vivian M. Yeh
  • Kenneth A. Wallston
  • Duane T. Smoot
  • Consuelo H. Wilkins
Original Research



There is much attention to recruitment of diverse populations in research, but little is known about the influence of health literacy and numeracy skills.


To determine if health literacy and numeracy affect individuals’ interest to participate in research studies.


Cross-sectional survey data were pooled from 3 large studies conducted in the Mid-South Clinical Data Research Network.


Adult patients enrolled in 1 of 3 Mid-South Clinical Data Research Network studies.

Main Measures

The survey domains included demographic items, the 3-item Brief Health Literacy Screen (range 3–15), and the 3-item Subjective Numeracy Scale (range 3–18). The outcome was a sum index measure of a 7-item instrument (range 7–21) assessing individuals’ interest in participating in different types of research, including research that involves taking surveys, giving a blood sample, participating via phone or internet, taking an investigational medication, meeting at a local community center or school, including family, or staying overnight at a hospital.

Key Results

Respondents (N = 15,973) were predominately women (65.5%), White (81.4%), and middle aged (M = 52.8 years, SD = 16.5); 32.4% previously participated in research. Self-reported health literacy was relatively high (M = 13.5 out of 15, SD = 2.1), and subjective numeracy skills were somewhat lower (M = 14.3 out of 18, SD = 3.6). After adjustment for age, gender, race, income, education, and other characteristics, lower health literacy and numeracy skills were each independently associated with less interest in research participation (p < 0.001 for each). Prior research participation was associated with greater interest in future research participation (p < 0.001).


After adjustment for factors known to be predictive of interest, individuals with lower health literacy or numeracy scores were less interested in participating in research. Additional work is needed to elucidate reasons for this finding and to determine strategies to engage these populations.


health literacy health numeracy survey research 



There are no additional contributors to this manuscript.


This work was supported by the Patient-Centered Outcomes Research Institute (R-1306-04869 and ME-1306-03342) and the National Institutes of Health (5UL1TR000445, 5U54MD007593, and 5U24TR001579).

Compliance with Ethical Standards

The Vanderbilt Institutional Review Board (IRB) approved each study. Participants provided electronic or written informed consent.

Prior Presentations

Patel, N.J., Jackson, N., Duke, L., Wilkins, C.H., Heerman, W.J., and Kripalani, S. The Effect of Health Literacy and Numeracy on Interest in Research Participation. Presented at the Advancing the Science of Community Engaged Research Conference in 2016.

Conflict of Interest

Sunil Kripalani, MD, MSc – Consultancies: SAI Interactive and Verustat/Stock ownership in Bioscape Digital.

Russell L. Rothman, MD, MPP – Consultancies: EdLogics, Inc. and Boehringer – Ingelheim.

Kenneth A. Wallston, PhD – Other – Member of the Advisory Board of EdLogics, Inc.

All other authors declare no conflicts of interest.


  1. 1.
    Taylor RG, Hounchell M, Ho M, Grupp-Phelan J. Factors associated with participation in research conducted in a pediatric emergency department. Pediatr Emerg Care. 2015;31:348–52.CrossRefGoogle Scholar
  2. 2.
    Voss R, Gravenstein S, Baier R, et al. Recruiting hospitalized patients for research: how do participants differ from eligible nonparticipants? J Hosp Med. 2013;8:208–14. CrossRefGoogle Scholar
  3. 3.
    Bonevski B, Randell M, Paul C, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol. 2014;14:1.CrossRefGoogle Scholar
  4. 4.
    George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health. 2014;104:e16-e31.CrossRefGoogle Scholar
  5. 5.
    Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved. 2010;21:879.CrossRefGoogle Scholar
  6. 6.
    Steinerman J, Lipton R, Rapkin B, Quaranto B, Schwartz C. Factors associated with openness to research participation in an aging community: The importance of technophilia and social cohesion. Gerontechnology. 2013;11:504–12.CrossRefGoogle Scholar
  7. 7.
    Unger JM, Hershman DL, Albain KS, et al. Patient income level and cancer clinical trial participation. J Clin Oncol. 2013;31:536–42.CrossRefGoogle Scholar
  8. 8.
    Stewart JH, Bertoni AG, Staten JL, Levine EA, Gross CP. Participation in surgical oncology clinical trials: gender-, race/ethnicity-, and age-based disparities. Ann Surg Oncol. 2007;14:3328–34.CrossRefGoogle Scholar
  9. 9.
    Kutner MA, Greenberg E, Baer J. National Assessment of Adult Literacy (NAAL): A first look at the literacy of America’s adults in the 21st century. US Department of Education. Washington, DC: National Center for Education Statistics; 2005.Google Scholar
  10. 10.
    Institute of Medicine Committee on Health Literacy. Health Literacy: A Prescription to End Confusion. Washington (DC): National Academies Press; 2004.Google Scholar
  11. 11.
    Ratzan SC, Parker, RM, Selden CR, Zorn, CR. National library of medicine current bibliographies in medicine: Health Lliteracy. Bethesda (MD): U.S. Department of Health and Human Services, National Institues of Health; 2000.Google Scholar
  12. 12.
    Rothman RL, Housam R, Weiss H, et al. Patient understanding of food labels: the role of literacy and numeracy. Am J Prev Med. 2006;31:391–8.CrossRefGoogle Scholar
  13. 13.
    DeWalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP. Literacy and health outcomes. J Gen Intern Med. 2004;19:1228–39.CrossRefGoogle Scholar
  14. 14.
    Goggins KM, Wallston KA, Nwosu S, et al. Health literacy, numeracy, and other characteristics associated with hospitalized patients’ preferences for involvement in decision making. J Health Commun. 2014;19:29–43.CrossRefGoogle Scholar
  15. 15.
    Kripalani S, Bengtzen R, Henderson LE, Jacobson TA. Clinical research in low-literacy populations: using teach-back to assess comprehension of informed consent and privacy information. IRB. 2008;30:13–9.Google Scholar
  16. 16.
    Leak C, Goggins K, Schildcrout JS, et al. Effect of health literacy on research follow-up. J Health Commun. 2015;20:83–91.CrossRefGoogle Scholar
  17. 17.
    Greene SM, Reid RJ, Larson EB. Implementing the learning health system: from concept to action. Ann Intern Med. 2012;157:207–10.CrossRefGoogle Scholar
  18. 18.
    Rosenbloom ST, Harris P, Pulley J, et al. The Mid-South Clinical Data Research Network. J Am Med Inform Assoc. 2014;21:627–32.CrossRefGoogle Scholar
  19. 19.
    Heerman WJ, Jackson N, Roumie CL, et al. Recruitment methods for survey research: findings from the Mid-South Clinical Data Research Network. Contemp Clin Trials. 2017;62:50–5.CrossRefGoogle Scholar
  20. 20.
    Roumie CL, Shirey-Rice J, Kripalani S. MidSouth CDRN - coronary heart disease algorithm. PheKB. 2014.
  21. 21.
    Harris PA, Scott KW, Lebo L, Hassan N, Lighter C, Pulley J. ResearchMatch: a national registry to recruit volunteers for clinical research. Acad Med. 2012;87:66.CrossRefGoogle Scholar
  22. 22.
    Joosten YA, Israel TL, Williams NA, et al. Community engagement studios: a structured approach to obtaining meaningful input from stakeholders to inform research. Acad Med. 2015;90:1646.CrossRefGoogle Scholar
  23. 23.
    Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research Electronic Data CAPture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support. Biomed Inform. 2009;42:377–81.CrossRefGoogle Scholar
  24. 24.
    McNaughton CD, Cawthon C, Kripalani S, Liu D, Storrow AB, Roumie CL. Health literacy and mortality: a cohort study of patients hospitalized for acute heart failure. J Am Heart Assoc. 2015;4:e001799.CrossRefGoogle Scholar
  25. 25.
    McNaughton CD, Kripalani S, Cawthon C, Mion LC, Wallston KA, Roumie CL. Association of health literacy with elevated blood pressure: a cohort study of hospitalized patients. Med Care. 2014;52:346.CrossRefGoogle Scholar
  26. 26.
    Wallston KA, Cawthon C, McNaughton CD, Rothman RL, Osborn CY, Kripalani S. Psychometric properties of the brief health literacy screen in clinical practice. J Gen Intern Med. 2014;29:119–26.CrossRefGoogle Scholar
  27. 27.
    McNaughton CD, Cavanaugh KL, Kripalani S, Rothman RL, Wallston KA. Validation of a short, 3-item version of the Subjective Numeracy Scale. Med Decis Making. 2015;35:932–6.CrossRefGoogle Scholar
  28. 28.
    Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Making. 2007;27:672–80.CrossRefGoogle Scholar
  29. 29.
    Heerman WJ, Bennett WL, Kraschnewski JL, Nauman E, Staiano AE, Wallston KA. Willingness to participate in weight-related research as reported by patients in PCORnet clinical data research networks. BMC Obes. 2018;5:10.CrossRefGoogle Scholar
  30. 30.
    Ownby RL, Acevedo A, Goodman K, Caballero J, Waldrop-Valverde D. Health literacy predicts participant understanding of orally-presented informed consent information. Clin Res Trials. 2015;1:15–9. Google Scholar
  31. 31.
    Cavanaugh K, Huizinga MM, Wallston KA, et al. Association of numeracy and diabetes control. Ann Intern Med. 2008;148:737–46.CrossRefGoogle Scholar
  32. 32.
    Baker DW. The meaning and the measure of health literacy. J Gen Intern Med. 2006;21:878–83.CrossRefGoogle Scholar
  33. 33.
    Rothman RL, Montori VM, Cherrington A, Pignone MP. Perspective: the role of numeracy in health care. J Health Commun. 2008;13:583–95.CrossRefGoogle Scholar
  34. 34.
    Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12:248–56.CrossRefGoogle Scholar
  35. 35.
    Svensson K, Ramirez OF, Peres F, Barnett M, Claudio L. Socioeconomic determinants associated with willingness to participate in medical research among a diverse population. Contemp Clin Trials. 2012;33:1197–205.CrossRefGoogle Scholar
  36. 36.
    UyBico SJ, Pavel S, Gross CP. Recruiting vulnerable populations into research: a systematic review of recruitment interventions. J Gen Intern Med. 2007;22:852–63.CrossRefGoogle Scholar
  37. 37.
    George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health. 2014;104:e16–31.CrossRefGoogle Scholar
  38. 38.
    Hughson JA, Woodward-Kron R, Parker A, et al. A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials. Trials. 2016;17:263.CrossRefGoogle Scholar

Copyright information

© Society of General Internal Medicine 2019

Authors and Affiliations

  • Sunil Kripalani
    • 1
    • 2
    • 3
    Email author
  • William J. Heerman
    • 2
    • 4
  • Niral J. Patel
    • 3
  • Natalie Jackson
    • 4
  • Kathryn Goggins
    • 2
    • 3
  • Russell L. Rothman
    • 1
    • 2
    • 3
  • Vivian M. Yeh
    • 3
  • Kenneth A. Wallston
    • 2
    • 5
  • Duane T. Smoot
    • 6
  • Consuelo H. Wilkins
    • 6
    • 7
    • 8
  1. 1.Division of General Internal Medicine and Public Health, Department of MedicineVanderbilt University Medical CenterNashvilleUSA
  2. 2.Center for Effective Health CommunicationVanderbilt University Medical CenterNashvilleUSA
  3. 3.Center for Clinical Quality and Implementation Research Vanderbilt University Medical CenterNashvilleUSA
  4. 4.Division of General PediatricsMonroe Carell Jr. Children’s Hospital at VanderbiltNashvilleUSA
  5. 5.School of NursingVanderbilt UniversityNashvilleUSA
  6. 6.Department of Internal MedicineMeharry Medical CollegeNashvilleUSA
  7. 7.Meharry-Vanderbilt AllianceVanderbilt University Medical CenterNashvilleUSA
  8. 8.Division of Geriatrics, Department of MedicineVanderbilt University Medical CenterNashvilleUSA

Personalised recommendations