A Qualitative Study of Vulnerable Patient Views of Type 2 Diabetes Consumer Reports

  • Daniel R. Longo
  • Benjamin F. Crabtree
  • Maria B. Pellerano
  • Jenna Howard
  • Barry Saver
  • Edward L. Hannan
  • Justin Lee
  • Michael T. Lundberg
  • Roy Sabo
Original Research Article



The Patient Protection and Affordable Care Act (ACA) mandates the release of publicly available consumer reports to highlight differences in quality of care and reduce healthcare disparities. However, little is known about patient perceptions of the value of such reports.


This study aims to identify whether vulnerable populations with type 2 diabetes perceive consumer reports as helpful in making decisions about diabetes care.


We conducted a brief demographic survey and qualitative study of 18 focus groups: six each of African American, Hispanic, and non-Hispanic White consumers diagnosed with type 2 diabetes (n = 92). We analysed focus group transcripts to identify recurring themes, which were summarized and compared across population groups.


Participants expressed minimal interest in currently available consumer reports. They instead listed personal referrals and interpersonal interactions among the most important factors when choosing a physician. Further, in place of information to aid in physician selection, participants articulated strong desires for more basic, straightforward disease-specific information that would promote diabetes self-management.


This study’s results call into question the value of consumer reports as defined by the ACA. Participants reported little interest in comparative provider performance data. Instead, they were more interested in information to assist in diabetes self-management. This suggests that consumer reports may not be as important a tool to improve outcomes and reduce health disparities as policy makers imagine them to be.



Shannon D. Jones moderated the African American focus groups, Melissa Hayes and Justin Lee recruited participants for the focus groups, and Dr. Mark Ryan and Dr. Carmen Zorrilla provided support to Dr. Lee with regard to the Hispanic focus groups. Heather Longo provided editorial services.

Author contributions

Drs. Longo and Crabtree had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Study concept and design: Longo, Lundberg, Hannan. Acquisition of data: Longo and Lee. Analysis and interpretation of data: Longo, Crabtree, Pellerano, Howard, Sabo. Critical revision of the manuscript for important intellectual content: Longo, Crabtree, Pellerano, Howard, Saver, Hannan, Lundberg, Sabo. Qualitative analysis: Crabtree, Pellerano, Howard, Longo. Administrative, technical, and material support: Longo and Lee. Study supervision: Longo and Crabtree.

Compliance with Ethical Standards

The study was approved by the appropriate Institutional Review Boards and has been performed in accordance with the ethical standards of the Declaration of Helsinki.

Informed consent was obtained from all individual participants included in the study.

Conflict of interest disclosures

The authors (Longo, Crabtree, Pellerano, Howard, Saver, Hannan, Lee, Lundberg, and Sabo) have completed and submitted the Adis Form for Disclosure of Potential Conflicts of Interest, and none were reported.


Funding by the Agency for Healthcare Research and Policy (AHRQ) grant number 1R21 HS021902-01.

Role of the sponsor

The sponsors had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

Prior presentations

Longo DR, Wright B, Lee J. Public reporting as a communication tool to aid vulnerable consumers in healthcare decisions: what do we know? AcademyHealth; Annual Research Meeting, Baltimore, MD, USA; 23 June 2013.

Lee J, Longo DR, Crabtree B, Howard J, Pellerano M. What do patients who are vulnerable want in publicly available health care consumer reports? AcademyHealth; Annual Research Meeting, San Diego, CA, USA; 10 June 2014.

Longo DR. Engaging vulnerable consumers in developing useful public health reports. AHRQ Building the Science of Public Reporting: Grantee Meeting at Academy Health; 10 June 2014.

Supplementary material

40271_2015_146_MOESM1_ESM.docx (478 kb)
Supplementary material 1 (DOCX 477 kb)


  1. 1.
    Agency for Healthcare Research and Quality. 2013 national healthcare quality report. http://www.ahrq.gov/research/findings/nhqrdr/nhqr13/index.html. Accessed 4 Aug 2014.
  2. 2.
    Agency for Healthcare Research and Quality. Consumer assessment of healthcare providers and systems. https://www.cahps.ahrq.gov. Accessed 30 Jan 2012.
  3. 3.
    Agency for Healthcare Research and Quality. Public reports on provider performance for consumers. http://www.ahrq.gov/path/publicreporting.htm. Accessed 30 Jan 2012.
  4. 4.
    Agency for Healthcare Research and Quality. Quality indicators. http://www.qualityindicators.ahrq.gov/. Accessed 7 Jan 2012.
  5. 5.
    Patient Protection and Affordable Care Act, 2010. H.R. 3590, 111th Congress of the United States of America.Google Scholar
  6. 6.
    Ketelaar NA, Faber MJ, Flottorp S, Rygh LH, Deane KH, Eccles MP. Public release of performance data in changing the behaviour of healthcare consumers, professionals or organisations. Cochrane Database Syst Rev. 2011;11:CD004538.PubMedGoogle Scholar
  7. 7.
    Berger ZD, Joy SM, Hutfless S, Bridges JF. Can public reporting impact patient outcomes and disparities? A systematic review. Patient Educ Couns. 2013;93:480–7.CrossRefPubMedGoogle Scholar
  8. 8.
    Fung CH, Lim Y, Mattke S, Damberg C, Shekelle PG. Systematic review: the evidence that publishing patient care performance data improves quality of care. Ann Intern Med. 2008;148:111–23.CrossRefPubMedGoogle Scholar
  9. 9.
    Hannan EL, Cozzens K, King SB 3rd, Walford G, Shah NR. The New York state cardiac registries: history, contributions, limitations and lessons for future efforts to assess and publicly report health care outcomes. J Am Coll Cardiol. 2012;59:2309–16.CrossRefPubMedGoogle Scholar
  10. 10.
    Anonymous. Public reporting as a quality improvement strategy: a systematic review of the multiple pathways public reporting may influence quality of health care. http://www.effectivehealthcare.ahrq.gov/ehc/products/343/763/CQG-Public-Reporting_Protocol_20110817.pdf Accessed 30 Jan 2012.
  11. 11.
    Elixhauser A, Parker J, Pine M, Andrews R. Improving administrative data for public reporting. Agency for Healthcare Research and Quality (AHRQ) Annual Conference: Promoting Quality. Partnering for Change, Bethesda, 9 September 2008.Google Scholar
  12. 12.
    Bardach NS, Hibbard JH, Dudley RA. Users of public reports of hospital quality: who, what, why and how? An aggregate analysis of 16 online public reporting web sites and users’ and experts’ suggestions for improvement. http://archive.ahrq.gov/professionals/quality-patient-safety/quality-resources/value/pubreportusers/index.html. Accessed 30 Jan 2012.
  13. 13.
    Schauffler H, Mordavsky J. Consumer reports in health care: do they make a difference? Annu Rev Public Health. 2001;22:69–89.CrossRefPubMedGoogle Scholar
  14. 14.
    Dorsey CJ, Murdaugh CL. The theory of self-care management for vulnerable populations. J Theor Constr Test. 2003;7:43–9.Google Scholar
  15. 15.
    Centers for Disease Control and Prevention. National diabetes fact sheet: National estimates and general information on diabetes and prediabetes in the United States; 2011. http://www.cdc.gov/diabetes/pubs/pdf/ndfs_2011.pdf. Accessed 12 Mar 2012.
  16. 16.
    Krueger RA, Casey MA. Focus groups: a practical guide for applied research. 4th ed. London: SAGE; 2009.Google Scholar
  17. 17.
    Crabtree BF, Miller WL. Doing qualitative research. 2nd ed. Thousand Oaks: Sage Publications; 2000.Google Scholar
  18. 18.
    Addison RB. A grounded hermeneutic editing approach. In: Crabtree BF, Miller WL, editors. Doing qualitative research. Thousand Oaks: Sage Publications; 1999. p. 145–61.Google Scholar
  19. 19.
    Totten AM, Wagner J, Tiwari A, O’Haire C, Griffin J, Walker M. Closing the quality gap: revisiting the state of the science (vol. 5: Public reporting as a quality improvement strategy). Evid Rep Technol Assess (Full Rep). 2012;(208.5):1–645.Google Scholar
  20. 20.
    Kolstad JE, Chernew ME. Quality and consumer decision making in the market for health insurance and health care services. Med Care Res Rev. 2009;66(1 Suppl):28S.CrossRefPubMedGoogle Scholar
  21. 21.
    Longo DR, Woolf SH. Rethinking the information priorities of patients. JAMA. 2014;311:1857–8.CrossRefPubMedGoogle Scholar
  22. 22.
    Hibbard JH, Greene J, Daniel D. What is quality anyway? Performance reports that clearly communicate to consumers the meaning of quality of care. Med Care Res Rev. 2010;67:275–93.CrossRefPubMedGoogle Scholar
  23. 23.
    Halbert CH, Armstrong K, Gandy OH Jr, Shaker L. Racial differences in trust in health care providers. Arch Intern Med. 2006;166:896–901.CrossRefPubMedGoogle Scholar
  24. 24.
    Hispanic health in the United States. Council on scientific affairs. JAMA. 1991;265:248–52.CrossRefGoogle Scholar
  25. 25.
    Brandon DT, Isaac LA, LaVeist TA. The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care? J Natl Med Assoc. 2005;97:951–6.PubMedPubMedCentralGoogle Scholar
  26. 26.
    Kennedy BR, Mathis CC, Woods AK. African Americans and their distrust of the health care system: healthcare for diverse populations. J Cult Divers. 2007;14:56–60.PubMedGoogle Scholar
  27. 27.
    Lagnado L. When racial sensitivities clash with research. Wall St J (East Ed). 1997;B1:B5.Google Scholar
  28. 28.
    Harris Y, Gorelick PB, Samuels P, Bempong I. Why African Americans may not be participating in clinical trials. J Natl Med Assoc. 1996;88:630–4.PubMedPubMedCentralGoogle Scholar
  29. 29.
    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;21:879–97.CrossRefPubMedPubMedCentralGoogle Scholar
  30. 30.
    Katz RV, Kegeles SS, Kressin NR, Green BL, James SA, Wang MQ, et al. Awareness of the Tuskegee syphilis study and the US presidential apology and their influence on minority participation in biomedical research. Am J Public Health. 2008;98:1137–42.CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Westergaard RP, Beach MC, Saha S, Jacobs EA. Racial/ethnic differences in trust in health care: HIV conspiracy beliefs and vaccine research participation. J Gen Intern Med. 2014;29:140–6.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Sinaiko AD, Rosenthal MB. The impact of tiered physician networks on patient choices. Health Serv Res. 2014;49:1348–63.CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Hibbard JH, Peters E, Dixon A, Tusler M. Consumer competencies and the use of comparative quality information: it isn’t just about literacy. Med Care Res Rev. 2007;64:379–94.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2015

Authors and Affiliations

  • Daniel R. Longo
    • 1
  • Benjamin F. Crabtree
    • 2
  • Maria B. Pellerano
    • 2
  • Jenna Howard
    • 2
  • Barry Saver
    • 3
  • Edward L. Hannan
    • 4
  • Justin Lee
    • 5
  • Michael T. Lundberg
    • 6
  • Roy Sabo
    • 7
  1. 1.Department of Family Medicine and Population HealthVirginia Commonwealth UniversityRichmondUSA
  2. 2.Department of Family and Community MedicineRutgers Robert Wood Johnson Medical SchoolSomersetUSA
  3. 3.University of Massachusetts Medical SchoolWorcesterUSA
  4. 4.University at Albany, State University of New YorkAlbanyUSA
  5. 5.University of North Carolina at GreensboroGreensboroUSA
  6. 6.Virginia Health InformationRichmondUSA
  7. 7.Department of BiostatisticsVirginia Commonwealth UniversityRichmondUSA

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