Trust, confidentiality, and the acceptability of sharing HIV-related patient data: lessons learned from a mixed methods study about Health Information Exchanges

Abstract

BackgroundConcerns about the confidentiality of personal health information have been identified as a potential obstacle to implementation of Health Information Exchanges (HIEs). Considering the stigma and confidentiality issues historically associated with human immunodeficiency virus (HIV) disease, we examine how trust—in technology, processes, and people—influenced the acceptability of data sharing among stakeholders prior to implementation of six HIEs intended to improve HIV care in parts of the United States. Our analyses identify the kinds of concerns expressed by stakeholders about electronic data sharing and focus on the factors that ultimately facilitated acceptability of the new exchanges.MethodsWe conducted 549 surveys with patients and 66 semi-structured interviews with providers and other stakeholders prior to implementation of the HIEs to assess concerns about confidentiality in the electronic sharing of patient data. The patient quantitative data were analyzed using SAS 9.2 to yield sample descriptive statistics. The analysis of the qualitative interviews with providers and other stakeholders followed an open-coding process, and convergent and divergent perspectives emerging from those data were examined within and across the HIEs.ResultsWe found widespread acceptability for electronic sharing of HIV-related patient data through HIEs. This acceptability appeared to be driven by growing comfort with information technologies, confidence in the security protocols utilized to protect data, trust in the providers and institutions who use the technologies, belief in the benefits to the patients, and awareness that electronic exchange represents an enhancement of data sharing already taking place by other means. HIE acceptability depended both on preexisting trust among patients, providers, and institutions and on building consensus and trust in the HIEs as part of preparation for implementation. The process of HIE development also resulted in forging shared vision among institutions.ConclusionsPatients and providers are willing to accept the electronic sharing of HIV patient data to improve care for a disease historically seen as highly stigmatized. Acceptability depends on the effort expended to understand and address potential concerns related to data sharing and confidentiality, and on the trust established among stakeholders in terms of the nature of the systems and how they will be used.

Sociotechnical Analysis of Health Information Exchange Consent Processes in an HIV Clinic

“…This was consistent with studies that have found that PLWH were willing to share PHI with essential need-to-know clinicians (Maiorana et al, 2012; Patel et al, 2011; Teixeira, Gordon, Camhi, & Bakken, 2011). On the other hand, the fact that almost 48% of PLWH in this HIV clinic had neither consented nor declined represented a missed opportunity to improve quality of care and quality of life for PLWH, given the evidence of the importance of sharing PHI across providers to support the HIV care continuum (Mugavero, Amico, Horn, & Thompson, 2013).…”

A cross-sectional survey exploring attitudes towards provincial electronic health record implementation among clients attending the Provincial Sexually Transmitted Infections Clinic in British Columbia

“…In planning for an opt-out model, Hunter, Haining and Whiddett conducted a survey where 39% of patients expressed that they wanted more information, prior discussion or consent before they felt comfortable with their sexual health service records being integrated with EHR 23. This has been echoed in another study where clients’ acceptability of sharing electronic health information was dependent on building trust in providers and institutions prior to EHR implementation 28. Similarly, the results from our study suggest that careful planning to address patient privacy concerns and evaluation of the impacts should be conducted during the implementation and use of EHR.…”

Conceptual models to guide integration during analysis in convergent mixed methods studies

“…Maiorana et al (2012) illustrate this approach in their study about trust and acceptability of sharing HIV-related patient data. Quantitative survey data with HIV patients and qualitative interview data with medical staff were merged for comparison, using the qualitative findings to provide a more in-depth understanding of the quantitative drivers and barriers of sharing HIV-related patient data (Maiorana et al, 2012). The quantitative data framed the analysis and the qualitative data were used to elaborate and explain the quantitative findings.…”

“…We were less successful in identifying studies using either the explanatory bidirectional or exploratory bidirectional framework. We suspect this is at least partly attributable to the practice of authors truncating discussion in the methods and instead allocating words to the results or discussion section due to word count restrictions.Very few studies we identified were explicit about the drivers of the analysis (Maiorana et al, 2012; Myers et al, 2012), making it difficult not only to systematically search and review the MMR literature but also to identify the analytical framework used in the integration of quantitative and qualitative data. Several reviews have found that most MMR papers lack clarity in whether the reported results stem from…”