Do you self-monitor? What works for you? #ClinicSpeak #MSBlog
I am convinced that rheumatologists monitor and treat rheumatoid arthritis (RA) more effectively than we treat MS is because RAers (people with RA) are more activated and engaged with their own disease. Granted active RA is more likely to cause symptoms, i.e. painful, warm and stiff joints, compared to MS were over 90% of the disease activity is asymptomatic. However, the fact that the RA disease activity score includes a PROM (patient related outcome measure) makes all the difference. Rheumatologists need their patients to score their disease before they can make a decision about treatments. We need to get to the same point in MS. Why? It is clear that as effective drugs for treating MS have emerged we need to have documented evidence of disease activity, for example relapses and/or MRI activity to make decisions about starting, switching or escalating treatments. This is to make sure we are using the DMTs in the cohorts of patients in which there is evidence they work and that they are cost-effective. As DMTs for progressive MS emerge we will need to do the same for progression. There are two ways of doing this, i.e. to get your neurologists to make sure they do the EDSS, timed-25-foot walk and/or MSFC (MS functional composite) every 6-12 months or to start monitoring your own disease.
I have recently been contacted by a medical APP developer who want to convert their APP into an MS monitoring APP. It is very appealing to collaborate with them because they have an existing platform. My worry is the design of the APP (not MS specific) and whether or not it is suitable for MSers from a design perspective. I also have concerns about the business model. Someone has to pay for the platform, who is going to pay; the users (you), healthcare payers (NHS, insurance companies, etc.), sponsors (e.g. Pharma) or via advertising? Unfortunately, in the modern era there are no free lunches.
I am aware that a lot of you are already tracking and monitoring your disease. I would appreciate hearing about your experiences and recommendations. Our time at Barts-MS is becoming increasingly more valuable and I need to focus on things that will really make a difference to be people with MS; we need transformational technologies and not another APP to burden.
I have been pondering the idea of developing a 360-degree web APP, similar to TripAdvisor, called MSAdvisor. The idea is to use this platform to allow MSers, HCPs and MS Service providers to come together on one platform. There is nothing like a bad review to improve service provision. What do you think?