Use of registries for chronic disease management

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?



3 thoughts on “Use of registries for chronic disease management

  1. This is an interesting program. I agree with my classmate, that there are certainly ways this program could lead to increased disparities. Although, I do think more people, including those with less money, are owning cell phones, many with data plans, regardless of whether or not they have a computers. I think important factors to consider when designing an online portal would be layout, terminology, ease of use. No one, regardless of wealth, is going to spend time on an app that is difficult to use, requires multiple log-ins, or is in language they don’t understand. I think there is promise in improving quality outcomes for chronic disease management, but only if done in a thoughtful way that engaged users early on in the development process.


  2. I think this Swedish model is really a promising model for patient care in the future where doctors can know before hand what their patient desired the most and prepare resources in advance for the visit. The article points out an really interesting point that many patients, at their doctor visit, want to talk about different things other than their illness. I actually think that this only apply to patients that are familiar with the doctors and are frequent visitors who know a fair amount about their disease already as any first-comer or not frequent visitor will wan to learn about their illness and treatment first. As a result, I think this model is best applied to people with chronic disease only. In addition, I agree with the post originator that the effect also heavily depend on the technology availability to the people. It would be meaningless if the patients of interest do not have the mean to access the database such as computers or mobile phone. I would also agree with Annie that barely anyone would want to use a complicate health care interface even though it is their health that is in consideration. I would believe that they would rather go to their doctors for summaries.


  3. This is an interesting model that could provide some benefits in the future. However, I tend to echo the above assessments in drawbacks due to availability of technology and type of disease being treated. Moreover, this type of model is successful in Sweden where the population is largely homogenous. To me, implementing this method in a more populous, heterogenous country such as the U.S. would vary in its effectiveness and efficiency. Based on the previous comments, it does seem likely that disparities would arise. I am also curious as to the way this model fits into the structure of socialized health care in Sweden compared to the U.S. structure. Having been to Sweden several times, I have witnessed the difficulties Swedish citizens have endured with long waiting times while trying to see a required physician before visiting their own private/personal doctor. I would be interested to know how this model takes those mandates into consideration during its implementation. I have great memories from being in Sweden and it is always fascinating to see the ways the country is evolving and bettering its society. It would be nice to see Sweden’s successful techniques employed here in the U.S… but it may be difficult in trying to compare apples to oranges.


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