Skip to main content
Log in

Consumer Support for Health Information Exchange and Personal Health Records: A Regional Health Information Organization Survey

  • Published:
Journal of Medical Systems Aims and scope Submit manuscript


In order to characterize consumer support for electronic health information exchange (HIE) and personal health records (PHRs) in a community where HIE is underway, we conducted a survey of English speaking adults who visited primary care practices participating in a regional community-wide clinical data exchange, during August, 2008. Amongst the 117 respondents, a majority supported physicians’ use of HIE (83%) or expressed interest in potentially using PHRs (76%). Consumers’ comfort sending personal information electronically over the Internet and their perceptions regarding the potential benefits of HIE were independently associated with their support for HIE. Consumers’ prior experience using the Internet to manage their healthcare, perceptions regarding the potential benefits of PHRs and college education were independently associated with potential PHR use. Bolstering consumer support for HIE and PHRs will require addressing privacy and security concerns, demonstrating clinical benefits, and reaching out to those who are less educated and computer literate.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others


  1. United States House of Representatives & Senate. The American Recovery and Reinvestment Act of 2009 (ARRA). U.S. Government Printing Office; 2009.

  2. National Alliance for Health Information Technology. Report to the Office of the National Coordinator for Health Information Technology on Defining Key Health Information Technology Terms. Bethesda, Maryland 2008 April 28, 2008.

  3. Institute of Medicine, Crossing the quality chasm: a new health system for the 21st century. National Academy Press, Washington, 2001.

    Google Scholar 

  4. Tripathi, M., Delano, D., Lund, B., and Rudolph, L., Engaging patients for health information exchange. Health Aff. 128(2):435–443, 2009.

    Article  Google Scholar 

  5. Goldstein, M. M., and Rein, A. L. Consumer consent options for electronic health information exchange: policy considerations and analysis. 2010; Available from:

  6. Department of Health and Human Services. Agency Information Collection Request, In: Federal Register, editors. pp. 13288–13289, 2010.

  7. Foundation M. Attitudes of Americans Regarding Personal Health Records and Nationwide Electronic Health Information Exchange. [cited 2010 January 27]; Available from: 2005.

  8. Simon, S. R., Evans, J. S., Benjamin, A., Delano, D., and Bates, D. W., Patients’ attitudes toward electronic health information exchange: qualitative study. J. Med. Internet Res. 11(3):e30, 2009.

    Article  Google Scholar 

  9. Whiddett, R., Hunter, I., Engelbrecht, J., and Handy, J., Patients’ attitudes towards sharing their health information. Int. J. Med. Inform. 75(7):530–541, 2006.

    Article  Google Scholar 

  10. Chhanabhai, P., and Holt, A., Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures. Med. Gen. Med. 9(1):8, 2007.

    Google Scholar 

  11. Johnstone, C., and McCartney, G. A patient survey assessing the awareness and acceptability of the emergency care summary and its consent model in Scotland. Perspectives in Health Information Management. 2010(Spring).

  12. The Markle Foundation. Connecting for health: A Public-Private Collaborative The Personal Health Working Group: Final Report. The Markle Foundation; 2003 [cited 2010 January 27]; Available from:

  13. Kaelber, D. C., Jha, A. K., Johnston, D., Middleton, B., and Bates, D. W., A research agenda for personal health records (PHRs). J. Am. Med. Inform. Assoc. 15(6):729–736, 2008.

    Article  Google Scholar 

  14. Gibbons, M. C., Wilson, R. F., Samal, L., Lehmann, C. U., Dickersin, K., Lehmann, H. P., Aboumatar, H., Finkelstein, J., Shelton, E., Ritu, S., and Bass, E. B. Impact of Consumer Health Informatics Applications. Rockville, MD.: (Prepared by Johns Hopkins University Evidence-based Practice Center under contract No. HHSA 290-2007-10061-I). 2009.

  15. Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., and Sands, D. Z., Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J. Am. Med. Inform. Assoc. 13(2):121–126, 2006.

    Article  Google Scholar 

  16. Kaelber, D. C., Jha, A. K., Johnston, D., Middleton, B., and Bates, D. W., A research agenda for Personal Health Records (PHRs). JAMIA. 15(6):729–736, 2008.

    Google Scholar 

  17. Nazi, K. M., Hogan, T. P., Wagner, T. H., McInnes, D. K., Smith, B. M., Haggstrom, D., et al., Embracing a health services research perspective on personal health records: lessons learned from the VA My HealtheVet system. J. Gen. Intern. Med. 25(Suppl 1):62–67, 2010.

    Article  Google Scholar 

  18. New York State Department of Health. Health Information Technology (Health IT) Office of Health Information Technology Transformation. 2007 [cited 2010 January 27]; Available from:

  19. RHIO GR. 2006 [cited 2010 January 27]; Available from:

  20. Blumenthal, D., Launching HITECH. N. Engl. J. Med. 362(5):382–385, 2010.

    Article  Google Scholar 

  21. Vest, J. R., and Gamm, L. D., Health information exchange: persistent challenges and new strategies. J. Am. Med. Inform. Assoc. 17(3):288–294, 2010.

    Google Scholar 

  22. Adler-Milstein, J., Bates, D. W., and Jha, A. K., US Regional health information organizations: progress and challenges. Health Aff. (Millwood). 28(2):483–492, 2009.

    Article  Google Scholar 

  23. Kern, L. M., Barron, Y., Abramson, E. L., Patel, V., and Kaushal, R., HEAL NY: promoting interoperable health information technology in New York State. Health Aff. (Millwood). 28(2):493–504, 2009.

    Article  Google Scholar 

  24. AHRQ. CAHPS Clinician & Group Survey [cited January 27 2010]; Available from: .

  25. AHRQ. Medical expenditure panel survey. [cited 2010 January 27]; Available from:

  26. Ware, J., Jr., Kosinski, M., and Keller, S. D., A 12-Item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med. Care 34(3):220–233, 1996.

    Article  Google Scholar 

  27. South Dakota e-health Collaborative. The South Dakota Electronic Health Record Assessment Survey: Health Care Consumer. 2008 [cited 2007 October 15]; Available from:

  28. O’Donnell, H., Patel, V., Kern, L. M., Barron, Y., Teixeira, P., Dhopeshwarkar, R. V., and Kaushal R. Healthcare consumers’ attitudes towards physician and personal use of health information exchange. Under Review.

  29. McGraw, D., Dempsey, J. X., Harris, L., and Goldman, J., Privacy as an enabler, not an impediment: building trust into health information exchange. Health Aff. (Millwood). 28(2):416–427, 2009.

    Article  Google Scholar 

  30. Office of the National Health Information Technology Coordinator. Privacy and Security and Health Information Technology. 2009 [cited 2010 January 27]; Available from:

  31. Collaborative NYe-H. Recommendations for Standardized Consumer Consent Policies and Procedures for RHIOs in New York to Advance Interoperable Health Information Exchange to Improve Care. 2008.

  32. Venkatesh, V., Morris, M. G., Davis, G. B., and Davis, F. D., User acceptance of information technology: toward a unified view. MIS Quarterly. 27(3):425–478, 2003.

    Google Scholar 

  33. Davis, F. D., Perceived usefulness, perceived ease of use, and user acceptance of information technology. MIS Quarterly. 13(3):319–340, 1989.

    Article  Google Scholar 

  34. Weingart, S. N., Rind, D., Tofias, Z., and Sands, D. Z., Who uses the patient internet portal? The PatientSite experience. J. Am. Med. Inform. Assoc. 13(1):91–95, 2006.

    Article  Google Scholar 

  35. Ralston, J. D., Carrell, D., Reid, R., Anderson, M., Moran, M., and Hereford, J., Patient web services integrated with a shared medical record: patient use and satisfaction. J. Am. Med. Inform. Assoc. 14(6):798–806, 2007.

    Article  Google Scholar 

  36. Silvestre, A. L., Sue, V. M., and Allen, J. Y., If you build it, will they come? The Kaiser Permanente model of online health care. Health Aff. (Millwood). 28(2):334–344, 2009.

    Article  Google Scholar 

  37. Kahn, J. S., Aulakh, V., and Bosworth, A., What it takes: characteristics of the ideal personal health record. Health Aff. (Millwood). 28(2):369–76, 2009.

    Article  Google Scholar 

  38. Office of the National Health Information Technology Coordinator. Draft Model Personal Health Record (PHR) Privacy Notice & Facts-At-A-Glance. [cited 2010 January 27]; Available from:

  39. Markle Foundation. Americans Overwhelmingly Believe Electronic Personal Health Records Could Improve Their Health. 2008; Available from:

Download references


This study was funded by the Rochester RHIO. Thanks to Ted Kremer and Jill Eisenstein for their support in conducting this study.

Author information

Authors and Affiliations


Corresponding author

Correspondence to Vaishali N. Patel.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Patel, V.N., Dhopeshwarkar, R.V., Edwards, A. et al. Consumer Support for Health Information Exchange and Personal Health Records: A Regional Health Information Organization Survey. J Med Syst 36, 1043–1052 (2012).

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: