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A Study to Elicit Behavioral Health Patients' and Providers' Opinions on Health Records Consent

Published online by Cambridge University Press:  01 January 2021

Abstract

A main objective of this study is to assess the opinions of 50 behavioral health patients on selective control over their behavioral and physical health information. We explored patients' preferences regarding current consent models, what health information should be shared for care and research and whether these preferences vary based on the sensitivity of health information and/or the type of provider involved. The other objective of this study was to solicit opinions of 8 behavioral health providers on patient-driven granular control of health information and potential impact on care.

Electronic surveys were implemented at an outpatient Behavioral Health facility that provides care for behavioral health patients with non-serious mental illnesses. The Patient Survey included questions regarding patients' demographics and about their concerns and preferences for data sharing for care and research. The Provider Survey included questions about their view on the current consent process and perceptions on barriers and facilitators to implement patient-controlled granular consent models.

This novel study provides valuable preliminary data that can help guide future studies to better understand privacy choices of this underrepresented patient group.

Type
Independent Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2017

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References

Hirsch, M. D., “Patients Want ‘Granular’ Privacy Control of Electronic Health Info,” FierceEMR, available at <http://www.fierceemr.com/story/patients-want-granular-privacy-control-electronic-health-info/2012-11-28> (last visited May 24, 2017); Barrows, R. C. and Clayton, P. D., “Privacy, Confidentiality, and Electronic Medical Records,” JAMIA 3, no. 2 (1996): 139-148.Google Scholar
NCVHS for the U.S. Department of Health and Human Services, “Privacy and Confidentiality in the Nationwide Health Information Network,” available at <http://www.ncvhs.hhs.gov/recommendations-reports-presentations/june-22-2006-letter-to-the-secretary-recommendations-regarding-privacy-and-confidentiality-in-the-nationwide-health-information-network/> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
Department of Health and Human Services, “Summary of the HIPAA Privacy Rule,” available at <http://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
“Consumer Consent Options for Electronic Health Information Exchange: Policy Considerations and Analysis,” available at <https://www.healthit.gov/sites/default/files/choicemodelfinal032610.pdf> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
Dhopeshwarkar, R. V., Kern, L. M., O'Donnell, H. C., Edwards, A. M., and Kaushal, R., “Health Care Consumers' Preferences around Health Information Exchange,” Annals of Family Medicine 10, no. 5 (2012): 428-434; “Patients Seek Strong Say in How Their Data Are Used,” available at <http://www.amednews.com/article/20121003/business/310039997/8/> (last visited May 24, 2017).Id.;Google Scholar
“Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information,” available at <https://www.healthit.gov/sites/default/files/nationwide-ps-framework-5.pdf> (last visited May 24, 2017);+(last+visited+May+24,+2017);>Google Scholar
“Fair Information Practice Principles (FIPPs),” available at <http://www.nist.gov/nstic/NSTIC-FIPPs.pdf> (last visited March 4, 2016); “Fair Information Practice,” available at <https://en.wikipedia.org/wiki/FTC_Fair_Information_Practice,” (last visited May 24, 2017).+(last+visited+March+4,+2016);+“Fair+Information+Practice,”+available+at+Google Scholar
NCVHS for the US Department of Health and Human Services, “Recommendations on Privacy and Confidentiality 2006-2008,” available at <http://www.ncvhs.hhs.gov/privacyreport0608.pdf> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
Association for Psychological Science, “Stigma as a Barrier to Mental Health Care,” available at <http://www.psychologicalscience.org/index.php/news/releases/stigma-as-a-barrier-to-mental-health-care.html> (last visited May 24, 2017); Dinos, S., Stevens, S., Serfaty, M., Weich, S., and King, M., “Stigma: the Feelings and Experiences of 46 People with Mental Illness,” British Journal of Psychiatry 184, no. 2 (2004): 176-181.Google ScholarPubMed
OPEN MINDS, “The Current State of Sharing Behavioral Health Information in Health Information Exchanges,” available at <https://www.openminds.com/market-intelligence/resources/current-state-sharing-behavioral-health-information-health-information-exchanges.htm/> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
Substance Abuse and Mental Health Services Administration (SAMHSA), “Behavioral Health Trends in the United States: Results from the 2014 National Survey on Drug Use and Health,” available at <http://www.samhsa.gov/data/sites/default/files/NSDUH-FRR1-2014/NSDUH-FRR1-2014.pdf> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
Druss, B. G., Rohrbaugh, R. M., Levinson, C. M., and Rosenheck, R. A., “Integrated Medical Care for Patients with Serious Psychiatric Illness: A Randomized Trial,” Archives of General Psychiatry 58, no. 9 (2001): 861-868.Google Scholar
Alexopoulos, G. S., Reynolds, C. F., Bruce, M. L., Katz, I. R., Raue, P. J., Mulsant, B. H., Oslin, D. W., Ten Have, T., and PROSPECT Group, “Reducing Suicidal Ideation and Depression in Older Primary Care Patients: 24-Month Outcomes of the PROSPECT Study,” American Journal of Psychiatry 166, no. 8 (2009): 882890; J. Unützer, W. Katon, C. M. Callahan, J. W. Williams, E. Hunkeler, L. Harpole, M. Hoffing, R. D. Della Penna, P. H. Noël, E. H. B. Lin, P. A. Areán, M. T. Hegel, L. Tang, T. R. Belin, S. Oishi, C. Langston, and IMPACT Investigators, “Improving Mood-Promoting Access to Collaborative Treatment, “Collaborative Care Management of LateLife Depression in the Primary Care Setting: A Randomized Controlled Trial,” JAMA 288, no. 22 (2002): 2836–2845.Google Scholar
Melek, S. P., “Bending the Medicaid Healthcare Cost Curve through Financially Sustainable Medical-Behavioral Integration,” Milliman (July 2012).Google Scholar
“Arizona Health e-Connection. The Right Information to the Right Person, at the Right Time, for the Right Purpose,” available at <http://www.azhec.org/> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
“Behavioral Health Information Network of Arizona,” available at <http://www.bhinaz.com/index.php> (password protected; last visited March 4, 2016).+(password+protected;+last+visited+March+4,+2016).>Google Scholar
“Behavioral Health Information Network of Arizona, Consent Model Opt-In Versus Opt-Out,” available at <http://www.bhinaz.com/index.php/consent-model> (password protected; last visited March 4, 2016).+(password+protected;+last+visited+March+4,+2016).>Google Scholar
Dimitropoulos, L., Patel, V., Scheffler, S. A., and Posnack, S., “Public Attitudes toward Health Information Exchange: Perceived Benefits and Concerns,” American Journal of Managed Care 17, Spec. No. 12 (2011): SP111116.Google Scholar
See Dhopeshwarkar, , supra note 5.Google Scholar
Caine, K. and Hanania, R., “Patients Want Granular Privacy Control over Health Information in Electronic Medical Records,” JAMIA 20, no. 1 (2013): 7-15.Google Scholar
Bell, E. A., Ohno-Macahdo, L., and Grando, M. A., “Sharing My Health Data: A Survey of Data Sharing Preferences of Healthy Individuals,” presentation at the American Medical Informatics Association Conference, Washington, D.C., November 2014.Google Scholar
Schwartz, P. H., Caine, K., Alpert, S. A., Meslin, E. M., Carroll, A. E., and Tierney, W. M., “Patient Preferences in Controlling Access to Their Electronic Health Records: A Prospective Cohort Study in Primary Care,” Journal of Internal Medicine 30, Suppl. 1 (2015): S25-S30.Google Scholar
Teixeira, P. A., Gordon, P., Camhi, E., and Bakken, S., “HIV Patients' Willingness to Share Personal Health Iinformation Electronically,” Patient Education and Counseling 84, no. 2 (2011): e912.Google Scholar
Wright, A., Soran, C., Jenter, C. A., Volk, L. A., Bates, D. W., and Simon, S. R., “Physician Attitudes toward Health Information Exchange: Results of a Statewide Survey,” JAMIA 17, no. 1 (2010): 66-70.Google Scholar
Patel, V., Abramson, E. L., Edwards, A., Malhotra, S., and Kaushal, R., “PHysician's potential use and preferences related to health information exchange”. Int J Med Inform (2011): 80(3):171–80.Google Scholar
Hincapie, A. L., Warholak, T. L., Murcko, A. C., Slack, M., and Malone, D. C., “Physicians' Opinions of a Health Information Exchange,” JAMIA 18, no. 1 (2011): 60-65.Google Scholar
Shank, N., “Behavioral Health Providers' Beliefs about Health Information Exchange: A Statewide Survey,” JAMIA 19, no. 4 (2012): 562-569.Google Scholar
Tierney, W. M., Alpert, S. A., Byrket, A., Caine, K., Leventhal, J. C., Meslin, E. M., and Schwartz, P. H., “Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care,” Journal of general Internatl Medicine vol. 30, no. 1 (2014): 31-37.CrossRefGoogle Scholar
“SAS,” Statistical Analysis Toolkit, available at <http://www.sas.com/en_us/software/sas9.html> (last visited May 24, 2017); see Schwartz, et al., supra note 24.+(last+visited+May+24,+2017);+see+Schwartz,+et+al.,+supra+note+24.>Google Scholar
“CAT,” Coding Analysis Toolkit, available at <http://cat.texifter.com/> (last visited May 24, 2017).+(last+visited+May+24,+2017).>Google Scholar
“National Institute of Mental Health,” available at <http://www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-adults.shtml> (last visited May 24, 2017); see Wright, supra note 26.+(last+visited+May+24,+2017);+see+Wright,+supra+note+26.>Google Scholar
See NCVHS for the U.S. Department of Health and Human Services, supra note 2.Google Scholar
See Dhopeshwarkar, , supra note 5.Google Scholar
See Schwartz, , supra note 22.Google Scholar