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Content, common purpose and community unite patients online

How patients are connecting to make sure their voice is heard.

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By Gil Bashe, Health Tech World US Digital Health Correspondent.

Belong.Life is a global platform that harnesses the best of science, community, digital health and people’s desire to connect with each other in confidence to ask questions around priority health concerns. People going through health journeys often have extraordinary insights; their collective wisdom leads to patient-provider conversations that sustain and save lives.

Belong.Life started in 2016 and is now the creator of the largest online community of people with cancers in the world. Knowing that people with shared health concerns want to connect and learn from each other, they’ve expanded to serve the communities of those with multiple sclerosis (MS) and other conditions.

Much of the participatory community information is used to improve scientific and medical communications: Belong.Life draws on patient voice to bring anonymous and aggregated data to ASCO and other leading peer review forums worldwide.

Health Tech World Correspondent Gil Bashe shares his conversation with Eliran Malki – health technology pioneer, social platform visionary and Belong.Life co-founder and CEO.

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Gil Bashe: As a successful global technology entrepreneur, what inspired you to launch Belong.Life?

Eliran Malki: I’ve seen cancer’s impact on families, including my own. I lost my grandfather, my aunt and my uncle to cancer. The other two Belong.Life co-founders also lost close relatives to cancer. We saw that it was time to change the way people connect, converse and care. Cancer takes hold of people’s lives and consumes those closest to them. It was hard for my family members to share what they were going through, even with loving caregivers; they were protecting us, protecting themselves, and there was no clear path. We made mistakes trying to guess what was coming next and what they wanted. Cancer is a challenging and pressing project.

We realised we had to create an effective, conversational, real-time connection for patients, families, providers and passionate pioneers looking to improve care and treatment.

We have proven that our platforms can also enhance communication and the sharing of knowledge for advocacy and professional organizations, and our newest self-managed platform “i-Belong” is now also providing them the option of a self-built, self-managed patient community, an environment that supports peoples’ engagement goals.

Bashe: You understood early on the importance of creating this desperately needed platform and also recognised the importance of advocacy alliances. Belong.Life has made a very powerful connection with leading cancer organisations and other advocacy groups. Tell us more.

Malki: Knowledge is a big part of treatment success and understanding your options as a patient. Physicians are experts, for certain; however, people with serious illnesses like cancer or chronic conditions like MS quickly become experts, too. Technology is a bridge connecting patients, physicians, payers, product developers and even policymakers to be more responsible and forthcoming. Social platforms that unite with advocacy groups ensure that reviewed educational information is accessible as a resource. Those resources have greater, more timely value when available for patient conversations centered on real-life experience and needs.

Bashe: How has the platform been a catalyst to advance care? Why have so many around the world been drawn to participate?

Malki: When there is a sense that you aren’t alone, that others with “veteran experience” share and understand your journey, you are given the strength and ability to see the road ahead. Being a part of communities with specific experience in treatment, lifestyle challenges, enrolling in clinical trials and more, is very reassuring.

People on our platforms sometimes share that they’re having a difficult time. Those personal connections are inspiring and reassuring, even though they’re in the digital space. Keep in mind, not everyone lives in a major metropolitan center with countless in-person options. Also, COVID has made immunocompromised people rely on at-home virtual and social platforms that are physically safe and, in many ways, emotionally safer. Belong helps everyone to make connections. We have over a million users because we provide value that leads to stress relief, education, options and patient engagement, which may result in saving a life.

Bashe: Belong.Life enables people with serious illnesses to make connections. Do you think the COVID-19 era changed people’s decision to participate in online platforms?

Malki: COVID-19 dramatically inconvenienced our lives, but it has also made technology more a part of life. We are engaging with apps, smart phones and computers more than ever. Before heading to a hospital or clinic for every question, people with health concerns are turning to digital communities to gain insight and direction. Clearly, professionals and people who walk in your shoes have something to add. When you make it easy to connect with hundreds of thousands, perhaps millions, of patients and caregivers, you enable tremendous power and knowledge. The power of asking real-life questions – anything from coffee’s effect on cancer or MS – and to manage your treatment as a project, is very reassuring.

We recently surveyed more than 1,000 Belong.Life users who are cancer patients on their experiences after receiving the COVID-19 vaccine. This targeted survey, which took place before the Delta variant became widespread, included demographic and clinical questions related to respondents’ cancers, their ongoing therapies, and their vaccination interactions. The results were shared at the European Society of Medical Oncology (ESMO) meeting and reinforced the necessity and safety of the vaccine for all populations, especially those at high risk.

Bashe: Belong.Life also helps people find clinical trials, whether by peer-to-peer or patient-to-patient referral. You and the team feel a great responsibility to ensure that people have all the information they need to feel they’re successfully navigating their cancers. What’s your take on the role research plays?

Malki: From a personal friend’s experience, clinical trials can extend a person’s life by six months or more, or even save their life. It’s very important to share with patients that clinical trials are not a last resort. Many patients think that clinical trials are only an option when everything else fails; in many cancers, by then it’s too late to participate in one.

Bashe: It’s an incredibly practical community: People can be open about their situation and needs. They can input data to explore and find clinical trials. It’s not just a chat room, it’s a total, digital, health-resource center.

Malki: We’ve helped more than 15,000 people find a clinical trial. We guard confidentiality while providing practical assistance. We have participants who have been using the platform since our 2016 launch. It’s inspiring and illustrates our mission to improve and raise the bar on patient value.

Bashe: Can you also discuss security and confidentiality? With people sharing personal information online and inputting data in the AI information aggregator, you obviously paid a tremendous amount of attention to cybersecurity.

Malki: Yes, it’s really important to us. We take privacy and security very seriously, and our platforms are compliant with the U.S. Health Insurance Portability and Accountability Act (HIPAA), EU’s General Data Protection Regulation (GDPR) and other relevant regulations.

Bashe: Belong.Life also invests a lot in science and research. Your chief medical officer is a world-renowned oncologist. What types of research do you generate and why? Why is it so important to share insights in the peer review setting?

Malki: AI can map and understand billions of data points in moments and understand trends and challenges better and faster than a person. We are using data and AI to better understand what’s working, what’s not and what can help patients with the same type of cancer or other disease to accelerate their care and diversify their options. We can advance clinical research and impact millions of people as a result of these aggregating information tools.

Bashe: The biopharmaceutical industry research giants say we should invite the patient to our table. You’ve reversed that expression, saying “No, it’s their table.” Do you see Belong.Life as an important driver in the future of the industry, which is now decentralizing clinical trials to make them more accessible to people who don’t live near where the trial may be held?

Malki: Patients are becoming consumers of medical care. Patients used to just do whatever their physician told them to. Now, with digital access to others who have faced similar situations, patients can make big decisions with real-life information. They can access community research on the safest, cleanest hospital, or even the one with the best coffee. People are reading more and want to have a choice. Belong.Life helps make that engagement possible.

The way the world is changing makes it vital for patients to be more proactive and manage more of their treatment decisions. The ecosystem needs the patient to participate – whether it’s reporting drug side effects, compliance or special diets.

Belong.Life apps are global social networks and disease navigation platforms where personalized information supports patients through their journeys. Our valuable features include support groups, access to medical professionals, clinical trial matching services, and additional navigation and storage tools.

Bashe: You now have a whole cascade of communities centered around health concerns. What are some of the priority communities that are part of Belong.Life?

Malki: We started with cancer and added more communities. Now, we are the world’s largest digital platform for MS too, with more than 100,000 MS patients engaged on our app.

People with shared health concerns have a special bond. Their language may be different, their concerns and journeys unique, but their longing to connect and learn is universal.

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Malki and Belong.Life have created a unique community platform allowing people with pressing health issues to express their feelings and concerns and set a life-sustaining game plan. Ultimately, Belong.Life connects the most vital part of the health system – the patient – to the ecosystem of care.

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