Improving Healthcare Quality with User-Centric Patient Portals

Patient-centered care involves respect for patients’ values and preferences, coordination across care settings, cultural competency, effective communication, and patient education. To achieve patient-centered care, patients need personalized, timely, and understandable medical information. These needs can potentially be supported by electronic patient portals, though common barriers to adoption and effective use include poor usability and portal designs that focus on facilitating organizational goals rather than patients’ goals.

The goal of this project was to learn how to empower patients to assume a central role in the management of their health and healthcare through patient portals. The project team applied mixed-methods to assess patient portals, usage in primary care, and their impact on chronic disease outcomes at three healthcare organizations in New York City.

The specific aims of this project were as follows:

• To develop a Patient Information Management Needs Framework for health activities. 
• To validate the Patient Information Management Needs Framework. 
• To apply the Patient Information Management Needs Framework to improve task-technology fit of consumer technologies. 
• To evaluate the effect of using a newly launched feature in the patient portal that allows the upload of patient-generated health data. 

The research team conducted the following four research studies to achieve the project aims. First, semi-structured interviews were conducted among patients with multiple chronic conditions. The findings indicated that patients consider it work to track their health data, some patients consider it their provider’s work, and some patients perceive that providers do not trust self-tracked data. Second, a retrospective cohort study of portal use was conducted at a federally qualified health center that embedded context-specific hyperlinks to plain-language patient education materials in its portal to help patients interpret their health records. The links were used by 10 percent of patients. Individuals with Medicaid health coverage were more likely to use the hyperlinks than patients with other types of health coverage. Third, a usability evaluation conducted with patients and their care givers applied a “task-technology fit” framework that helped improve the portal’s fit to patient needs. It found that patients often lack a clear understanding of tasks to manage their personal health information. Finally, a retrospective cohort study was conducted using data from adult ambulatory patients who used the patient-generated health data tool in the patient portal. A subset of patients with chronic disease who uploaded their data to the portal experienced significant decreases in mean hemoglobin A1c and body mass index.

The project team published more than 20 peer-reviewed papers on patient information management needs, adoption and impact of novel portal features, human factors analysis, and iterative development of patient portal functions. The findings of these research studies will inform approaches to improve adoption of patient portals.