MS Advocates Hope Better Data Will Mean Better Care
The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam.
In the European Union a project called Real World Evidence Data, or RWE, is working outside of the traditional clinical research box, hoping to provide MS patients with faster access to therapies that are safer and more efficient. It also is hoped this data will give patients greater input into the regulation and pricing of medicines.
“Real world evidence data already supports patient advocates but also regulators, payers and researchers to find answers for many key questions,” says European Parliament Member Cristian Bușoi. Bușoi and the European Multiple Sclerosis Platform (EMSP) recently co-sponsored a conference on RWE. “RWE can give an indication on whether work-focused MS therapies are cost-effective and ultimately bring a societal contribution,” he says.
Multiple data sources across multiple countries
To accomplish this, researchers with the EMSP are working to extract data from physicians’ practices, prescription data bases, patient registries and social media. Their hope is to build a data collection network that will be a one-stop provider of MS patient data, across multiple EU countries, in areas where national data collection does not provide sufficient depth.
For example, data about the cost of illness is being studied by health economist Gisela Kobelt. The study involves 17,000 MS patients from 16 European countries. It’s hoped that data such as this will help drive regulatory decisions about multiple sclerosis treatments.
You can see PowerPoints of some of the presentations at the RWE conference here.
A somewhat similar effort is underway in the U.S. by a group called the Accelerated Cure Project for MS. It’s goal is to allow patients to have a greater impact on treatments for the disease. It, too, collects data, but it gathers it directly from patients via its website, iConquerMS.org. On this secure site, patient volunteers (I’m one of them) provide information about things such as how well they sleep, their social activities and the therapies they use. This data then can be used to determine which drugs and supplements work best for which people, which symptoms have the biggest impact on quality of life, or what people with MS can expect from making lifestyle changes.
iConquerMS is supported by many top MS organizations, including the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, and Can Do MS. “Understanding the MS experience from the patient’s perspective is vital to improving the care of people with MS and to creating effective treatment paradigms,” according to the National MS Society’s Timothy Coetzee, PhD, on the project’s website. You can find more info about iConquerMS in a column I wrote several months ago.
There’s power in data. These two programs are making a good start at lassoing it for the benefit of all of us who live with MS.
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