Nine research teams provided a glimpse into the next generation of PHRs at the RWJF Conference held September 17th in Washington D.C. The research grantees are taking part in the Robert Wood Johnson Foundation $5 million dollar project called “Project HealthDesign”. The program was funded through RWJF’s Pioneer Portfolio to revolutionize the purpose and potential for electronic PHRs.
The research team at Vanderbilt University is actively developing a PHR application for caregivers and children with cystic fibrosis to use both at home and in schools to help manage medications. The emerging system called “My-Medi-Health” features a medication management assistant for younger kids, text messages for older children, reminder mechanisms for schools, plus communications tools that send just-in-time messages to caregivers. The medication management device can be placed in a variety of age appropriate packages to work with the application.
Dr. Kevin Johnson, MD, Vice Chair, Vanderbilt’s Department of Biomedical Informatics reports that the system should have an enormous impact on outcomes and will radically decrease the instances of kids getting the wrong dosage. Also, we will have much better data and we will be better able to understand when and why a child is experiencing side effects.
Laura Esserman, M.D., Director, Carol Franc Buck Breast Care Center at the University of California, San Francisco explained how a diagnosis of breast cancer can be one of the most overwhelming moments in a woman’s life. The UCSF team developed a calendar-based personal health record application to help women gain more control in balancing complex treatment options along with all of the demands in their everyday life. The tool provides women who have breast cancer with a voice and a window into the management of their own care.
The application collects critical data from patients and providers at the point-of-care. The PHR tool using visualization tools, helps schedule treatments, helps plan for care, provides reminders for visits, makes critical information available on prescriptions, and helps the patient move on to the next steps of care.
This tool is also designed to be a potential starting point for creating a patient-based registry open to patients, care providers, and researchers. The UCSF team is planning a nationwide demonstration project to determine if this patient-centered system could be a transformative agent in breast cancer care.
Two of the other grantees T.R.U.E. Research Foundation and the University of Washington are working on projects that focus specifically on people with diabetes with an eye toward assisting in the self management of the disease. The projects collect information on daily behaviors and then provide patients with individualized feedback and recommendations based on that information.
According to Stephanie Fonda, PHD, who heads a Project HealthDesign team at the Joslin Diabetes Center in Boston, “We’re developing a PHR application that takes into account personal data that is needed to manage diabetes with information on medications, emotional state, glucose levels, blood pressure, diet, physical activity, along with the interaction of all of these factors. The application also gives action-oriented advice for self care.”
The University of Washington team is developing a PHR application that uses mobile phones and the internet to shift the focus of healthcare away from the office and into the flow of patients’ daily lives.
The application wirelessly uploads readings over a cell phone to the person’s PHR and their medical provider. Providers can review the information and then provide feedback and advice to the patient through the PHR application. As one patient said “I just don’t need my doctor’s help in the same way I did before, but it’s nice to know that she is able to see how I’m doing”.
Other research teams located at Stanford University/Art Center College of Design are helping adolescents with chronic illness communicate their needs, RTI International is helping sedentary adults become more physically active, University of Massachusetts Medical School is designing a PDA to help patients mange their medications to deal with chronic pain, University of Colorado at Denver and Health Sciences Center, is using a portable touch screen tablet computer to help older patients with complex medication regimens, and the University of Rochester is developing a system to help congestive heart failure patients with their “daily check-up”.