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Giving MS patients a digital sense of community

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Through the creation of BelongMS, people living with Multiple Sclerosis around the world are being supported through the creation of a digital community. Its co-founder and CEO, Eliran Malki, shares the reasons for its foundation and the impact it is delivering

 

People who live with a chronic medical condition are often faced with a difficult choice: succumb to the condition or be proactive in managing it. Evidence shows that where sufferers are actively engaged, they maintain better mental health, which in turn has a positive effect on their physical health. The challenge is knowing where to turn to get the support that is best suited to their unique condition.

 

How Did it All Begin?

When a close family member of mine was battling cancer a few years ago, I realized something was missing in the way patients and caregivers manage the illness journey. Partnering up with two friends in a similar situation, we founded Belong.Life and our first app, Belong-Beating Cancer Together was created. What started out as us three entrepreneurs working out of a garage, has organically grown to be the largest cancer network in the world, with users in over 100 countries. Belong.Life now seamlessly connects patients and their caregivers with peers and medical professionals, all via an app on their phone.

Following the success of Belong-Beating Cancer Together, we started building the same platform for the Multiple Sclerosis (MS) community –BelongMS. Around 2.3 million people live with MS worldwide; the disease attacks the central nervous system and can cause varying symptoms, such as extreme fatigue, problems with vision or balance and gaps in memory. Lifetime costs for a patient in the US have been estimated to exceed $4 million, creating a deep need for access to the latest information about treatments.

Too often, patients are left with only technical resources at a time when they really need personal support. This is not a criticism of healthcare providers, but rather a reflection of the pressures in the health systems around the world, driven by the number of patients and budget concerns. We wanted to counteract this issue and improve the quality of life and quality of care for patients through connecting with others by leveraging our patient engagement insights and extending our proven machine learning technology to provide effective support for patients across the healthcare continuum.

How Belong is Connecting the MS Community and Ecosystem 

BelongMS is a free and anonymous AI-powered social networking and navigation platform for multiple sclerosis patients, caregivers and healthcare professionals. The app offers support groups and direct access to medical professionals, including neurologists, radiologists, urologists, and others who can answer patient questions. When opening the app, every user sees a personalized feed according to their  specific medical diagnosis, interests, situation and challenges. The app also provides useful tools, including a medical binder manager to store and organize medical records in one place, with the option to share them securely and privately with family members or physicians. A clinical matching trial feature is available as well, utilizing Natural Language Processing (NLP) algorithms to analyze all available trials around the globe to match patients within two weeks, on average – we’ll dive into that soon. 

Ultimately, BelongMS provides MS patients and their caregivers a safe meeting place where they can learn more about the condition, get updates on the latest treatments, and support each other. As the platform is entirely anonymous, it allows for completely open communication without any feelings of embarrassment or shame.

After launching in May 2020, we are very proud that BelongMS is now the world’s largest social and professional network for multiple sclerosis patients, with over 100,000 users in the US alone and more around the world accessing and gaining support from the app. 

 

The Belong Clinical Trial Matching Service 

Clinical trials play a major role in MS research, while also providing patients with access to the latest treatment technologies. They have been instrumental in the development of new drugs for patients with MS and participating in a trial helps both current and future patients dealing with the same disease, making it an essential step forward in increasing the range of treatment options.

However, finding a relevant trial can be challenging. The sheer volume of available clinical trials for MS can prove overwhelming for many physicians and patients and many available clinical trials databases present complex criteria explained using medical language, making it hard for humans as well as existing Natural Language Processing (NLP) technologies to analyze them. Even well-informed patients face challenges with the technical language used and the very granular nature of the inclusion and exclusion criteria. This leaves many patients unaware of the trials that could be their best hope for a cure or remission and a high number of trials critically under-enrolled.

In addition, MS patients often face another hurdle. Some of them find it hard to concentrate over time, and many of them experience some cognitive difficulties (AKA ‘cog fog’ among MS patients), making it tough to digest the vast amount of information found within the clinical trials databases. 

BelongMS already helped ~2,000 patients find relevant clinical trials relevant, and while our AI technology does 95% of the heavy lifting, our clinical trial coordinators consult with the users in order to  develop the final short list that meets the individual’s preferences and needs, such as inability to travel significant distances. 

Current achievements in the treatment of MS are mainly based on the outcomes of clinical trials that demonstrated valuable results in treating a disease which has an unpredictable course. As treatment options for MS broaden, future clinical trials will continue to incorporate new strategies to identify novel therapies and pathways of intervention, for the betterment of the MS community – Belong is honored to be a part of this journey.

 

In Conclusion

BelongMS is helping MS patients and caregivers all over the world to understand the treatment journey through reliable, professional and customized information. We’re providing an opportunity for the MS community to become proactive and participate in their own medical care. Our platform is not only improving patients’ quality of life but reducing the workload of doctors and hospitals by helping patients navigate their treatment journey with more independence. We hope to continue empowering patients and caregivers on their MS journey to manage their condition proactively and enjoy life to the maximum.

 

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