Randomized Controlled Trial Embedded in an Electronic Health Record

The use of a personal health record (PHR) may improve a patient’s overall health by providing access to health information that helps them to better manage their care. PHRs allow patients to receive information, view data necessary to guide practical decisions, and communicate with their health care team.

This project expanded an existing PHR to add established tools to assess tobacco use, depression, anxiety, and medication adherence, and to translate responses into numeric scores that trigger decision support for patients and direct them to resources or Web-based interventions. The PHR was made available to HIV-positive individuals at a safety net institution to see if medication adherence would improve. Lower viral loads and higher CD4 counts were used as surrogate markers for improved health. A randomized study was conducted with half of the target patients being given full and immediate access to the PHR and the other half with no access. All of the patients were given computer and Internet training, as well as a list of places with free Internet so they could access it at any time.

Specific aims of this project were to:

• Build the infrastructure and content of the PHR to provide patient decision support, information retrieval, and communication tools.
• Evaluate patient and provider experiences using the PHR, including patient access and use of health education materials and patient-provider satisfaction with the PHR.
• Assess outcomes, including quality of patient-provider interactions, changes in patient behaviors, clinical outcomes, safety, and health services utilization.         

From December 2009 to April 2011, HIV-positive adults receiving care at the HIV/AIDS Clinic at the San Francisco General Hospital who had consented to participate in the study were randomized to receive 12 months of access to a Web-based PHR (157), or to an account that withheld the PHR information (181). Participants were asked to complete Web-based surveys that were housed in their PHRs to ensure that patients were exposed to their health information. Non-PHR participants accessed these surveys via a Web portal. Use of the PHR was measured via the number of logins, cumulative time spent logged in, and numbers completing at least one survey at various stages of the study. More than 60 percent of participants demonstrated intermediate or expert computer competencies that would enable them to use health information technology tools to improve their connection with health care resources, including the ability to receive, search, and retrieve information via the Internet.

The study found that patients used the PHR and responded to online surveys, although participant understanding of the information was not measured. Despite this, there was no difference in the viral load or CD4 counts between the two groups at the end of the study.  The study team had three theories as to why a difference was not noted: 1) that the technology might not be sufficient to influence medication adherence; 2) that while the technology might be able to make such an impact, it was not used correctly in this study; and 3) that while technology is able to make an impact and was used correctly, it does not work in this particular population. A final consideration was that medications used to treat HIV/AIDS are so effective that tools to augment adherence are unable to enhance their anti-HIV effects.

The study team concluded that the use of technology likely has an important role as a social force to link otherwise disconnected patients to a social network. They recommend further studies to evaluate the impact of social networks on health outcomes.