Exchange platform for MS sufferers and their relatives – a pro-bono project by Cocomore
The first “truly social” social media
We created the MS Connect social exchange platform for the German Multiple Sclerosis Society (DMSG). The goal was to enable MS sufferers to flexibly and independently network with each other, facilitating a regular, self‑determined exchange in support of local self‑help groups. To this end, an innovative network was developed that meets the specific requirements of the target group: anonymity, personalisation and networking with similarly-affected persons.
This first, Germany-wide exchange platform especially for MS sufferers and their relatives won the Splash Award 2018 in the “Best Non-Profit Website” category.
The initial situation
Local support groups do not function very well for most sufferers. On the one hand, they are inflexible in terms of time and place, and on the other, the person with MS has no possibility of choosing contact persons who match his or her own needs.
Existing social media platforms do not provide the necessary framework to freely discuss sensitive and personal topics. Common networks are often too public, unfiltered and opaque. In contrast, MS Connect is a protected space.
Legal and regulatory framework
In December 2019, the Digital Supply Act (DVG) was passed. It subsidises digital services under certain conditions, enabling non-profit associations in particular to receive targeted support. MS Connect was launched in advance of the change in legislation and enabled us to combine current legal requirements in the healthcare sector with maximum user‑friendliness.
Today, this experience benefits other digital services in the healthcare environment. For example, the exchange platform created as part of MS Connect was further developed to provide comparable services for other associations, such as the German Parkinson’s Association.
Solution: trustworthiness and security
Users have the decision-making authority over their own data. For each new contact, what the other person is allowed to know can be specified within four confidentiality levels – and this setting can be changed at any time.
Affected individuals operate in a protected environment that is safeguarded by a two-stage login process. The only persons who can use MS Connect are DMSG members or persons authenticated by the DMSG.
In addition to a simple search, the user can search specifically for relevant parameters, such as the type of MS disease, the therapy used and the medications prescribed. This enables those affected to exchange targeted information about entirely specific experiences.
Group and event functions also make it possible to engage in digital or analogue exchanges with several people.
The issue of health concerns us all – and the German healthcare system is currently at the beginning of a necessary cycle of innovation. This is why we must continue to use our expertise for the common good with projects such as MS Connect.