Posted September 17, 2008 by Lygeia Ricciardi
I’m here at Project HealthDesign’s expo in Washington DC. Risa Lavizzo-Maurey, President and CEO of the Robert Wood Johnson Foundation, kicked off the conference by charging the full house of about 200 researchers, IT developers, policymakers, advocates, and “just geeks” to feel part revolutionary, part humanitarian as they collaborate to help shape the evolving field of PHRs. “Cross the frontier, take risks, make us smarter, and make us healthier!” she said.
Risa also emphasized the importance of addressing a few key policy and economic challenges: protecting privacy, enabling the free flow of clinical information to patients, and establishing a “solid business case” for PHRs.
Next, a series of panel interviews with Project HealthDesign grantees highlighted their work. Videos illustrated the tools they've been developing in the context of patients in their everyday lives. The videos featured people of different ages, races, and genders living with diabetes, heart disease, and breast cancer. A man used a small, touch screen device like a phone to remind him to take his diabetes medications, check blood sugar levels, and exercise. In another video, an older man with numerous medications for his heart condition used a scanner to identify pills and figure out which to take when and which were expired. In a third, a woman used a visually-oriented calendar to integrate a breast cancer treatment regimen into her current life focus – planning her daughter's wedding.
As one of the Project HealthDesign grantees, Stephanie Fonda from the TRUE Research Foundation, said, you can’t underestimate the extent to which patients are thinking about their health conditions all the time. Good tools help to alleviate their anxiety, free up time, and feel more in charge of their lives. Tools can also help to build and enhance relationships between patients and providers, as well as with the rest of the care team, which may include a daughter or son, parent, or spouse.
The key point is to design tools from the perspective of the patient, so they support his or her needs. Laura Esserman, from the University of California's Center of Excellence for Breast Cancer Care, talked about how Project HealthDesign interviewed patients directly, as well as caregivers, to understand how best to support them. A common theme that emerged was the desire to better integrate their health and healthcare into "real life". As a seasoned nurse reported, of the most common patient questions is “where am I in this care regimen?” Tools that answer that question for patients also free up providers and other caregivers to focus on providing the best care.