Patient Outcomes Research to Advance Learning (PORTAL) is a new collaboration of four healthcare delivery systems—Kaiser Permanente, Group Health Cooperative, HealthPartners, and Denver Health—and their 11 research centers. These partners are conducting research comparing the effectiveness and safety of preventive, diagnostic, and treatment options for congenital heart disease (CHD). During 2014 and 2015, PORTAL will identify high-priority research questions for CHD.
PORTAL will make sure that the research addresses the needs of patients and providers by bringing together patients and caregivers to participate in key decisions. One of the ways PORTAL is doing this is by helping to create a new online community that will make it easier for people with congenital heart defects to learn from each other, while also helping PORTAL learn more about the questions that matter most to patients. PORTAL is working with a company called Smart Patients that has successfully created online communities for patients and caregivers affected by different illnesses. They know how to help people share information with each other, while also helping groups like PORTAL learn what is most important to patients.
Several ACHA Ambassadors are playing a key role in setting up this community. Russell Tenofsky, Ken Woodhouse, Laura Hoagland, Emily Wells, and Deb Flaherty-Kizer are all working closely with Smart Patients to identify key issues for persons with CHD—based on their experience—and they are the first members of the online community to post and respond about these issues online. Their work will ensure that the online CHD community is meaningful and vibrant once it opens to others with CHD.