For those living with Hunter syndrome, access to information and support can be a real problem. Now a new program—Easier Together—aims to connect patients with these vital resources, no matter where they are.
The diagnosis of Hunter syndrome can be hard enough for families, but to then face a lack of practical information can be even more difficult— not just in those early days, but over the lifetime of the patient.
It was this state of affairs that first encouraged our MPS (Mucopolysaccharide Diseases) team to look beyond drugs and treatments to other ways that we could support patients, families and stakeholders. The result is a major, new initiative—called Easier Together –the first MPS II patient support program to span the globe
“Two years ago we decided to find out what practical support was out there for patients to use,” says Nicole Nettleton, Global Marketing Manager for the MPS team. “Working with an external vendor that specializes in patient support programs, we looked at 13 different countries and discovered huge gaps in provision. We recognized that in certain countries, there was an urgent need to connect patients with more help and information.”
So last year, the team conducted research to better understand the patient perspective. The MPS team asked patients to complete a daily diary—one that would create a journey from their initial symptoms through diagnosis and throughout their lifetime.
Through the research, it became clear that the actual diagnosis is one of the most difficult parts of a patient’s journey. Immediately, the diagnosis comes as a huge shock—but then the situation is made worse because information is so hard to find. The MPS team knew this had to be their starting point. As such, they developed a bevy of program ideas and interviewed physicians, nurses and local MPS societies for their opinion. It was from there that they chose to develop three individual elements, which would prove to be the foundation of Easier Together.
The first element is a printed binder that captures all of the information people are likely to need in one place. “The intention here is to drive understanding of the disease and to help with day-to-day issues,” continues Nicole, “not to promote our own drugs.”
The second element is an online, interactive tool that tests people’s knowledge of Hunter syndrome and provides all of the binder information in easy, bite-sized chunks.
The third element is a website linking local MPS societies and other relevant sites. “It contains a handy organizational tool enabling patients to keep track not just of appointments,” says Nicole, “but also of their symptoms in the way that makes most sense to them. So, for example, patients are able to track whether they feel able to walk to the park to see a family member play football or even button up a shirt.”
Easier Together will launch later this year and the MPS team are working on several new features, including enabling video uploads to the website and a game tailored to the MPS community.
“We want to turn this into a living program, one that people feel they own,” continues Nicole. “It’s about more than information—we want to help build a truly global community around Hunter syndrome. And the only way to do that is by involving that community at every step: the patients and their families, nurses, physicians and patient organizations.”