Patient social network MyMSTeam has partnered with Biogen to create an education resource for its multiple sclerosis patients.
The resource is focused on the lesser known effects MS has on cognition, including memory, concentration, and visual-spatial issues. Biogen and MyHealthTeams, the parent website for MyMSTeam, started by pulling research and insights from the thousands of MS patients using the network.
“We discovered this pattern of conversation where people didn’t realize the impact MS had on cognition,” said Mary Ray, cofounder and COO of MyHealthTeams. “It was a huge signal of a big opportunity for more patient education to ultimately improve outcomes with MS.”
The MS and cognition center includes four resources to help MS patients identify how the disease may be affecting their brain, tools to combat cognitive decline at home, and guides to help patients talk to their doctor about cognition issues.
Ray said she hopes the information will help MS patients catch cognitive changes and be able to combat the effects early, as well as to provide support to MS patients experiencing these issues. It could also show patients that they are not alone and help them talk to family, friends, and doctors.
MyMSTeam has previously worked with Biogen on research, but this is the first sponsored resource center the social network has created. Ray said the sponsorship made it easier to build a robust information center.
The benefit of a specific patient network, instead of Facebook or another social network, is that patients are more likely to share what it is really like living with a disease.
“When one’s diagnosed with a condition like MS, there’s a social chasm that surrounds them,” Ray said. “Facebook isn’t the same; everyday interaction isn’t the same. It helps to be around people that understand that nuance.”
Michelle Cox, a consultant at MyHealthTeams, echoed that sentiment.
“People are generally trying to present the best side of themselves on social media, but in a social network that is condition specific, we get to that unvarnished truth and conversations that you can’t have on Facebook,” she added.
Biogen has four FDA-approved MS treatments and two additional drugs in trials. One of Biogen’s MS drugs, Tecfidera, got a huge DTC investment in 2015 only to have the campaign end early because it didn’t boost prescriptions as expected. The ad campaign also received pushback from a former Biogen patient consultant who said in a blog post the ad “misrepresents MS.”
MyHealthTeams has 29 patient social networks covering conditions from autism to HIV. MyMSTeam is the largest MS social network; one of every six people in the U.S. living with MS is a registered member on the website.
“Biogen has been a great collaborator on this,” Ray said. “They really get the important need and the value the population will see in this [resource]. We hope other partners and pharma companies will do the same thing in their area of expertise as well.”