A PHS 795 student alerts us to a Robert Wood Johnson Foundation “culture of health” report on how Sweden is using a disease registry to improve quality and reduce costs for management of rheumatoid arthritis. Many registries are for long term outcomes research only; this one appears to involve tools to allow for patient engagement and clinical decision support. Very interesting. Our student writes:
The idea that disease registries can also help to move us closer to patient-centered care (which we know from lecture is one of the 6 important domains of quality) comes from a model used in Sweden. They created a disease registry for rheumatology patients to serve as an interactive tool that both patients and their doctors can use to optimize care. Over 10 years Sweden saw good results in improved use of medications, reduced inflammation, & decrease in hip replacements among those with rheumatoid arthritis. RWJF and other partners are working to adapt the SRQ model in the U.S. for patients with cystic fibrosis.
While specific disease registries like the SRQ model seem like an excellent tool, I’m not sure how this specific type of patient-centered quality of care improvement might have an effect on reducing health disparities. The article mentions that increased patient engagement can improve health outcomes. “A patient can log on to the registry on her laptop, tablet or mobile device. While sitting at her kitchen table, she can review her doctor’s notes, check her test results and enter information of her own on her symptoms, progress and challenges. These data are synthesized and graphically displayed to provide a real-time snapshot of her health and a longitudinal image that shows her health and treatment trends over time.” However, it seems that realistically many low-income patients or patients from racial/ethnic minority groups may not have the means (i.e. technology) required to update this information in real time on their end. Would this change the effectiveness of the tool?