Patient Education and Counseling
Volume 84, Issue 2 , Pages e9-e12, August 2011

HIV patients’ willingness to share personal health information electronically

Presented in part at the 2009 National Library of Medicine Informatics Fellows Meeting, Portland, OR, and at the American Medical Informatics Association (AMIA) 2009 Annual Symposium, San Francisco, CA

  • Paul A. Teixeira

      Affiliations

    • Department of Biomedical Informatics, Columbia University, New York, NY, USA
    • ,
  • Peter Gordon

      Affiliations

    • NewYork Presbyterian System SelectHealth, New York, NY, USA
    • Department of Medicine, Columbia University, New York, NY, USA
    • ,
  • Eli Camhi

      Affiliations

    • NewYork Presbyterian System SelectHealth, New York, NY, USA
    • ,
  • Suzanne Bakken

      Affiliations

    • Department of Biomedical Informatics, Columbia University, New York, NY, USA
    • School of Nursing, Columbia University, New York, NY, USA
    • Corresponding Author InformationCorresponding author at: Department of Biomedical Informatics, Columbia University, 622W. 168th St, VC-5, New York, NY 10032, USA. Tel.: +1 212 305 1278; fax: +1 212 305 6937.

Received 9 December 2009; received in revised form 21 June 2010; accepted 14 July 2010. published online 19 August 2010.

Abstract 

Objective

To assess the attitudes of persons living with HIV/AIDS (PLWH) towards having their personal health information (PHI) stored and shared electronically.

Methods

PLWH (n=93) in New York City completed surveys using audio computer-assisted self-interview (ACASI) that assessed willingness to share their PHI with various people and entities via a secure electronic network. The survey also included questions on satisfaction with and trust of health care providers, current health, HIV-associated stigma, and frequency of internet access. Data were analyzed with descriptive and multivariate statistical methods.

Results

The majority (84%) of individuals were willing to share their PHI with clinicians involved in their care. Fewer individuals (39%) were as willing to share with non-clinical staff. Willingness to share PHI was positively associated with trust and respect of clinicians.

Conclusion

PLWH accepted clinicians’ need for access to accurate information. Patients’ trust in their primary care providers highlights the importance of the clinician–patient relationship which can be used to engage patients support for health information exchange initiatives.

Practice implications

As electronic storage and sharing of PHI is increasing, clinicians and PLWH should discuss patients’ attitudes towards sharing PHI electronically.

Keywords: HIV, Continuity of care document, Personal health information, Health information exchange

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PII: S0738-3991(10)00414-3

doi:10.1016/j.pec.2010.07.013

Patient Education and Counseling
Volume 84, Issue 2 , Pages e9-e12, August 2011

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