By Deborah Borfitz

August 14, 2019 | The real-life challenges and experiences of cancer patients are very different than what they’d encounter in a clinical trial. They might wait weeks if not months to see a physician. Clinical issues such as medication side effects and the use of alternative therapies and dietary supplements may never get discussed—let alone entered in their medical record. Patients also may not have any sort of support or peer group to help them cope with the rollercoaster of emotions that often accompany a devastating diagnosis.

That’s where Belong.Life steps into the gap with a free, GPS-like app for cancer patients that’s driven by artificial intelligence (AI), says CEO Eliran Malki, who spoke to Clinical Research News from the company’s Israel office. Like many people, Malki has lost relatives to cancer. So have the company’s CTO Irad Deutsch and its CFO and COO Ohad Rubin.

Together they have built Belong – Beating Cancer Together, a mobile app that has quickly become the world’s largest social network for cancer patients, caregivers and healthcare professionals. Since launch in 2015, the app has acquired over 200,000 users—the vast majority patients and caregivers, plus hundreds of physicians and nurses. Using the platform, patients can stop “fighting in the dark” and instead learn from one another or otherwise get the information they need at just the right time, says Malki.

What has been missing is a “clear process” for patients to gather information and anonymously share their experiences, good and bad, he continues. In the hands of researchers, all that data might make the happy accidents termed “miracle” cures happen more frequently and deliberately.

The Belong – Beating Cancer Together app provides users with information about recovery, emotional support forums, access to experts and clinical trial matching. Its AI components have also been used to support international research projects presented at events organized by the European Society for Medical Oncology and the American Society of Clinical Oncology (ASCO).

With the release of the Belong Patient Engagement Platform (PEP) at the end of May, the same app is now available to the larger healthcare industry—including payers, providers, pharmaceutical companies and advocacy groups—as a white-label product, Malki says. Belong PEP is sold as a software-as-a-service (SaaS) solution or a fully managed service, and purposefully built to help organizations deal with the regulatory and operational challenges of engaging patients. The SaaS version already has customers, he adds.

“Our business model revolves around high-level AI and machine learning that deliver unique analytics and insights to improve patient engagement,” says Malki. Belong.Life also just got a big infusion of cash from a group of investors, notably IQVIA.

Other patient social networks have also been making headlines in recent weeks. To bolster its research efforts, UnitedHealth Group acquired PatientsLikeMe in June. At a conference in April, Facebook announced the release of a “Health Support” tool to help users find groups matching their health concerns and needs. And last year, MyHealthTeams added its 28th disease-specific social network and teamed up with global biopharmaceutical company UCB to provide educational resources for the platform.

The Role of AI

Belong – Beating Cancer Together harnesses AI to hyper-personalize the content users see, steer them to the most appropriate communities and professionals, and unite patients on a similar point in their care journey, says Deutsch. “No two cancer patients are alike—they can be in different stages with different symptoms, one having a mastectomy while another goes on a biological drug and be in different emotional and financial states with different fears and concerns.”

Patients presented with content that is not relevant to them will lose interest and may also be unnecessarily frightened, Deutsch notes. “We want to make sure people in the same boat will meet each other more and more frequently,” based on their clinical condition and treatment at any given time. Utilizing proprietary machine learning algorithms, Belong.Life tailors content based on the information users freely share about themselves, their disease and treatment because, unlike on social media sites like Facebook, their anonymity is highly guarded, Deutsch says.

Belong.Life classifies active users into three main categories depending on whether they typically follow their doctor’s instructions without question, seek out knowledge or challenge the system, says Deutsch, and “people tend to shift between those three phases.” Patients who have been quite proactive and leverage multiple tools on the site—e.g., talk to a virtual care team doctor and initiate conversations in an emotional support forum—may understandably become more passive when they go into remission.

Vehicle for Research

The clinical studies Belong.Life conducts are always retrospective and based on anonymized data, says Deutsch. To create a research cohort, it sometimes invites the entire population of app users to participate. In other cases, it reaches out to a smaller number of patients or caregivers asking for their assistance by filling out a survey or being interviewed by phone. “What really surprises me every time is how willing patients are to step forward when it comes to helping cancer research.”

One of the major research initiatives underway at Belong.Life is the creation of decision support “journey maps” depicting the experience of patients in real-life protocols, including first- and second-line treatments and their associated quality of life, Malki explains. They’re designed for use by physicians to “understand what patients could be facing in the future” and so they can deliver the right education to them at the right time. That should help make treatment less stressful for patients, as well as boost compliance and satisfaction.

“In cancer, one of the biggest challenges is that treatments are a little bit of trial and error,” Malki says. Most patients with the same cancer get the same first- and second-line drugs, but thereafter it’s a bit of a clinical crapshoot. The maps will guide doctors through the ever-changing menu of drug cocktail options to anticipate the next best one for their patient and the duration of its effectiveness—similar to how the GPS navigation software Waze gives drivers turn-by-turn route details to their destination using the input of other drivers about current traffic conditions.

“Our ‘Waze’ for cancer vision primarily encompasses enabling professional physicians to access retrospective, real-world data on different cancer journeys,” says Malki. “In addition, for patients, it delivers information based on other patients’ cancer journeys. As users ask questions and share their journeys, the AI gets better at presenting relevant information to the relevant population. We hope this process will ultimately improve the cancer treatment standard down the road as doctors and patients gain a deeper understanding of the various paths for treating cancer.”

This is of course infinitely more complicated than trying to save a few minutes on the road, Malki continues. There are more than 100 different types of chemotherapy drugs, plus a growing list of targeted therapies and immunotherapies.

Belong.Life wants to “better understand the patient journey and experience with treatments, how we can help bring about more personalized care, the right education when it’s needed and improved quality of life,” says Malki. Recently, the company announced that it had uncovered new insights about two commonly used breast cancer drugs, Paclitaxel and Docetaxel, based on real-time patient and caregiver reports.

Specifically, its patient-powered network found higher rates of a side effect, taxane-induced neuropathy, than has been reported in published studies. This points to the need for “further exploration of the gap between controlled clinical studies and real-world evidence," Malki says.

ASCO included three abstracts in its 2019 Congress Abstract book that were based on real-world data generated on the app and analyzed by leading data scientists and oncologists, he continues. In addition to the finding about the two drugs, these included summaries defining several emotional and financial burdens induced by cancer therapies, including incidences of depression and anxiety, and patient-reported relief from different complementary treatment methods. The third abstract found a patient-powered network could be used to improve the cost efficiency of healthcare systems since the data it collects creates clinical descriptions comparable to standard medical documents.

At a major oncology conference in Munich last year, Malki says, Belong.Life had patients share what works for them in dealing with fatigue and the realities of real-world treatment. It also had an ASCO abstract published in 2018 that concluded the data collected from app users could provide insights into the treatment journeys of metastatic pancreatic cancer patients, the prevalence of the three first-line treatments and following lines of treatment—meaning, the network has value for comparative effectiveness research.

The overall willingness of app users to participate in clinical trials has “definitely” improved as a result of their experience with it on Belong – Beating Cancer Together, Malki adds. Study results are routinely shared back with participants. Patients in the U.S. who generally view clinical trials as a “last resort” will proactively look for studies through the app’s Find Clinical Trials community, he notes.

Belong.Life also partners with many universities and external research organizations on studies looking for the patient point of view and retrospective experience, Malki says, which should lead to improved patient satisfaction. It has additionally worked with several hospitals to collect survey data and patient-reported outcomes using the app. If the company gathers enough intelligence to predict how patients will respond to certain drugs, he adds, it will team up with a provider to do a prospective clinical trial.

Just the Beginning

“We have received thousands of thank-you messages from Belongers,” Deutsch says. The Belong – Beating Cancer Together app has a 4.7-star rating in the Google Play store, with users leaving comments ranging from “great learning tool” and “exceeded my expectations” to “love having doctors to ask questions that [get an] answer within 24 hours usually” and “would be lost without this app.” One enthusiastic reviewer likened it to “Facebook with a purpose.”

A user fictitiously named Chico discovered he never really had cancer with the help of the virtual care team, supportive community members and personalized educational content, and he is not the only such case, says Deutsch. Users also frequently learn via the app that tinnitus is a little-known side effect of many chemotherapy drugs and start watching for symptoms; left untreated, it can cause hearing loss. “We have countless examples of where users get the right data at the right time, improving not only their quality of life but in many cases their treatment outcome.”

Moving forward, Belong.life will be extending its solution “to provide new insights to additional communities of patients across a range of different diseases, treatment, payers, providers and recovery processes," Malki says. Within three years, he expects the company will have the same solution available for most chronic or severe diseases, together with a decision support map for treatment.