Background:
Concerns about the confidentiality of personal health information have been identified as apotential obstacle to implementation of Health Information Exchanges (HIEs). Consideringthe stigma and confidentiality issues historically associated with human immunodeficiencyvirus (HIV) disease, we examine how trust–in technology, processes, and people–influenced the acceptability of data sharing among stakeholders prior to implementation ofsix HIEs intended to improve HIV care in parts of the United States. Our analyses identifythe kinds of concerns expressed by stakeholders about electronic data sharing and focus onthe factors that ultimately facilitated acceptability of the new exchanges.
Methods:
We conducted 549 surveys with patients and 66 semi-structured interviews with providersand other stakeholders prior to implementation of the HIEs to assess concerns aboutconfidentiality in the electronic sharing of patient data. The patient quantitative data wereanalyzed using SAS 9.2 to yield sample descriptive statistics. The analysis of the qualitativeinterviews with providers and other stakeholders followed an open-coding process, andconvergent and divergent perspectives emerging from those data were examined within andacross the HIEs.
Results:
We found widespread acceptability for electronic sharing of HIV-related patient data throughHIEs. This acceptability appeared to be driven by growing comfort with informationtechnologies, confidence in the security protocols utilized to protect data, trust in theproviders and institutions who use the technologies, belief in the benefits to the patients, andawareness that electronic exchange represents an enhancement of data sharing already takingplace 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 ofpreparation for implementation. The process of HIE development also resulted in forgingshared vision among institutions.
Conclusions:
Patients and providers are willing to accept the electronic sharing of HIV patient data toimprove care for a disease historically seen as highly stigmatized. Acceptability depends onthe effort expended to understand and address potential concerns related to data sharing andconfidentiality, and to the trust established among stakeholders in terms of the nature of thesystems and how they will be used.