Abstract
BackgroundPatient empowerment represents a potent tool for addressing racial, ethnic and socioeconomic disparities in health care, particularly for chronic conditions such as HIV infection that require active patient engagement. This multimodal intervention, developed in concert with HIV patients and clinicians, aims to provide HIV patients with the knowledge, skills, attitudes and tools to become more activated patients.Methods/DesignRandomized controlled trial of a multimodal intervention designed to activate persons living with HIV. The intervention includes four components: 1) use of a web-enabled hand-held device (Apple iPod Touch) loaded with a Personal Health Record (ePHR) customized for HIV patients; 2) six 90-minute group-based training sessions in use of the device, internet and the ePHR; 3) a pre-visit coaching session; and 4) clinician education regarding how they can support activated patients. Outcome measures include pre- post changes in patient activation measure score (primary outcome), eHealth literacy, patient involvement in decision-making and care, medication adherence, preventive care, and HIV Viral Load.DiscussionWe hypothesize that participants receiving the intervention will show greater improvement in empowerment and the intervention will reduce disparities in study outcomes. Disparities in these measures will be smaller than those in the usual care group. Findings have implications for activating persons living with HIV and for other marginalized groups living with chronic illness.Trial registrationClinicalTrials.gov Identifier: NCT02165735, 6/13/2014.
Highlights
Patient empowerment represents a potent tool for addressing racial, ethnic and socioeconomic disparities in health care, for chronic conditions such as HIV infection that require active patient engagement
Findings have implications for activating persons living with HIV and for other marginalized groups living with chronic illness
Study aims and hypotheses The overarching aim of this project is to assess the impact of a multi-model eHealth group behavioral intervention on patient activation among persons living with HIV
Summary
Poor and minority patients including PLWH report lower engagement in their care, [6] miss more office visits, [7] ask fewer questions during their visits, [8,9,10] report less confidence in self-management, [11] and more frequently miss doses [12] or stop taking their cART [13]. Lower use of these online portals by lower income and minority patients, [48,49,50,51,52,53,54,55] could further exacerbate current disparities in patient engagement by creating digital barriers to access to test results, requests for refills and appointments, and electronic messaging with clinicians This intervention is among the first to explicitly target these disparities among PLWH using a unique training program that focuses on self-management using a hand held PHR. The design of the intervention and study emerged using a community-based participatory research model involving collaboration between PLWH, clinicians and HIV organizations This active partnership has ensured that all aspects of the intervention are tailored to the needs of PLWH, including those with low eHealth literacy and that measures capture key outcomes meaningful to patients, empowerment, which we have operationalized using the patient activation measure. KAF, MB, RC, JB, AL, NE, RF, JC, AC, MS, WC, SF, SMF, JR, and JNT read and approved the final version of the manuscript
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