Project Details - Ended
- Grant Number:K01 HS019001
- Funding Mechanism:
- AHRQ Funded Amount:$744,686
- Principal Investigator:
- Project Dates:8/1/2011 to 7/31/2017
- Care Setting:
- Medical Condition:
- Type of Care:
- Health Care Theme:
Patient use of online personal health records (PHRs) holds the potential to make incremental improvements in patients' access to their health information. Breast cancer is the most common cancer in the U.S., and a diagnosis often evokes fear and distress. Breast cancer patients report unmet needs for information and skills to manage their illness and cope with the resultant major life changes and complex emotions. To bridge the divide between patients and the healthcare system, this study developed and evaluated a patient portal, called "MyHealthPortal," that integrates PHRs with educational and support content about treatment decision making and care management for newly diagnosed patients.
The specific aims of the project were as follows:
- Develop a patient-centered web-based portal for breast cancer patients undergoing treatment in a comprehensive cancer center.
- To assess the feasibility and potential impact of MyHealthPortal with early-stage breast cancer patients using a pilot randomized controlled trial (RCT).
Researchers developed MyHealthPortal through an iterative process including a literature review, web portal survey, health literacy evaluation, and usability testing. Qualitative studies explored patients' information needs and preference for a PHR-integrated portal. They also assessed clinicians' attitudes and expectations regarding the possible impact on the doctor-patient relationship from the implementation of a patient portal. Finally, the research team evaluated the appropriateness of the PHR presentation, educational content, and quality of the interactive tools before testing the final system in a RCT.
Results indicated that using a patient portal is feasible and useful among breast cancer patients. When measuring the effect of the system on patient outcomes, they found no difference between the groups for cancer-related distress, physical quality of life, and doctor-patient communication. However, information competence and self-efficacy scores in the intervention group were higher than those in the control group. Medical terminology was sometimes difficult for patients to understand, and the researchers concluded that interactive and comprehensive PHR systems need to provide educational or translational information for patients and families, ideally tailored to their individual circumstances and conditions. Per the researchers, future research should focus on continued patient and provider engagement in portal development, usage, ongoing patient support and self-management, and doctor-patient communication. Future work should also examine the potential of interactive PHR portals that expand from cancer prevention into survivorship, as well as mobile device PHR accessibility.