Use of electronic personal health record systems to encourage HIV screening: an exploratory study of patient and provider perspectives

Abstract

BackgroundWhen detected, HIV can be effectively treated with antiretroviral therapy. Nevertheless in the U.S. approximately 25% of those who are HIV-infected do not know it. Much remains unknown about how to increase HIV testing rates. New Internet outreach methods have the potential to increase disease awareness and screening among patients, especially as electronic personal health records (PHRs) become more widely available. In the US Department of Veterans' Affairs medical care system, 900,000 veterans have indicated an interest in receiving electronic health-related communications through the PHR. Therefore we sought to evaluate the optimal circumstances and conditions for outreach about HIV screening. In an exploratory, qualitative research study we examined patient and provider perceptions of Internet-based outreach to increase HIV screening among veterans who use the Veterans Health Administration (VHA) health care system.FindingsWe conducted two rounds of focus groups with veterans and healthcare providers at VHA medical centers. The study's first phase elicited general perceptions of an electronic outreach program to increase screening for HIV, diabetes, and high cholesterol. Using phase 1 results, outreach message texts were drafted and then presented to participants in the second phase. Analysis followed modified grounded theory.Patients and providers indicated that electronic outreach through a PHR would provide useful information and would motivate patients to be screened for HIV. Patients believed that electronic information would be more convenient and understandable than information provided verbally. Patients saw little difference between messages about HIV versus about diabetes and cholesterol. Providers, however, felt patients would disapprove of HIV-related messages due to stigma. Providers expected increased workload from the electronic outreach, and thus suggested adding primary care resources and devising methods to smooth the flow of patients getting screened. When provided a choice between unsecured emails versus PHRs as the delivery mechanism for disease screening messages, both patients and providers preferred PHRs.ConclusionsThere is considerable potential to use PHR systems for electronic outreach and social marketing to communicate to patients about, and increase rates of, disease screening, including for HIV. Planning for direct-to-patient communications through PHRs should include providers and address provider reservations, especially about workload increases.

Acceptability of a Patient Portal (Opal) in HIV Clinical Care: A Feasibility Study

“…PLWH were interested in most proposed Opal functions including access to their treatment plan, consultation notes, and sharing consultation notes; however, HCPs were less receptive to these functions. These concerns mirror those reported in prior literature; specifically, HCPs worry that their workload will increase due to an influx of PLWH messages or phone calls with these types of portal functions [ 43 ]. However, other studies that examined actual patient portal usage showed that allowing access to consultation notes through patient portals does not increase clinician workload, and in some cases, it even decreases the need for telephone calls and may reduce unnecessary appointments [ 44 , 45 ].…”

“…Despite the many anticipated benefits of using Opal, there were concerns as well. Opal raised privacy issues for many PLHW surveyed, which is congruent with prior literature citing concerns with data security theft, confidentiality, privacy, and HIV-related stigma as barriers to patient portal use and implementation [ 12 , 43 , 47 , 48 , 49 , 50 , 51 , 52 ].…”

Patient Portals and Patient Engagement: A State of the Science Review

“…Provider endorsement and continued engagement with the patient portal have been identified as important factors in a patient’s decision to adopt and continue to use the patient portal functions to achieve and sustain anticipated positive outcomes [ 19 , 75 ]. Of the 8 articles that addressed physician endorsement [ 12 , 19 , 34 , 76 - 80 ], 5 studies were qualitative or mixed-method studies, and one RCT included a retrospective survey of physicians’ use and satisfaction.…”

“…Four of the studies sought to capture attitudes of clinicians towards patient portals prior to having firsthand experience interacting with them. Prior to actual use of patient portals, clinicians expressed concerns related to patient engagement including: the potential for inducing patient anxiety regarding test results; the accuracy of patient entered data; the potential liability for tracking and acting on critical clinical information, such as blood glucose levels and blood pressure readings; implications for changes in the patient-provider relationship; and the anticipated increased workload [ 34 , 77 , 78 , 81 ].…”

“…Utility refers to the availability of needed features. Utility and usability are equally important and together determine whether something is useful [ 99 ]; 76 studies focused in some way on patient portal utility [ 5 , 12 , 13 , 15 , 19 , 22 , 23 , 25 - 27 , 30 , 34 , 37 , 41 , 44 , 47 , 52 , 53 , 56 , 57 , 59 , 60 , 64 , 65 , 69 , 70 , 79 , 82 , 84 - 87 , 89 , 90 , 92 , 96 , 98 , 100 - 137 ]. The majority of descriptive, qualitative, and mixed-method studies focused on eliciting patient preferences for specific functions.…”