App taps into patient data to explore human side of cancer
About $5b USD is spent on cancer research every year in the US alone. However, the research focuses mostly on the disease itself, leaving out a significant element in the oncological equation: the patients.
Belong.life--a company that uses artificial intelligence, engagement tools, and other methods to enhance patient engagement—has come up with the Beating Cancer Together app. Daniel Vorobiof, chief medical director of Belong.life, spoke with Outsourcing-Pharma to discuss the technology and the deeper story it can tell about the lives of cancer patients.
OSP: Please tell us about the Beating Cancer Together app.
DV: Belong-Beating Cancer Together is a free and anonymous patient engagement and navigation mobile application for cancer patients and healthcare providers, and currently the world’s largest social and professional network for cancer patients, with hundreds of thousands of users worldwide. Community members use the app to connect, receive and share clinical information anonymously and to privately discuss urgent issues related to their condition with others on the app. The app delivers a personalized experience for each user to help them with the practical and emotional elements of the cancer journey.
The app is more than a social network, though. Users also gain access to free features such as a medical binder, a clinical trial matching service, and specialist doctors who are available to answer patient questions. The combination of social network and treatment navigation tools makes this a truly comprehensive app for cancer patients and caregivers.
Beyond improving the patient experience, Belong.life is committed to helping advance medical research by leveraging its technology to provide aggregated, quality real-world data. The app’s proprietary AI and machine learning technology delivers actionable insights into patient journeys and uncovers key trends and patterns used in cancer studies and other medical research.
Belong has partnered with leading universities, and studies based on our data have been presented at and published by the American Society of Clinical Oncology (ASCO), the European Society for Medical Oncology (ESMO), and others.
OSP: Could you please tell us about the real-world studies you’ve worked on using the anonymous patient data aggregated from the app? For example, what are some of the things you’ve discovered regarding financial toxicity in cancer patients?
DV: This real-world study, in which 308 Belong-Beating Cancer Together users were surveyed, found that almost half of cancer patients receiving immunotherapy and suffering from financial toxicity (FT) were not aware of the possible development of FT prior to treatment. Additionally, only 33% of the patients received pretreatment information from their medical teams.
This research demonstrated the critical impact of financial toxicity on patients' lives due to anti-cancer immunotherapy treatments and serves as an important reminder for physicians and medical staff.
It’s important to begin discussing the financial burden of cancer with patients immediately upon diagnosis. Physicians should not wait for behavioral changes such as poor compliance or low or nonadherence caused by financial distress to have these discussions.
OSP: Then, what about the effects of cancer on the sexuality of patient and partner?
DV: This research study explored sexuality and intimacy-related issues in women with early breast cancer and their resulting partner-reported experiences. When a patient’s tumor is located in a sexual organ, the quality of the sexual and intimate lives of both patients and their respective partners can be affected.
In this study, 64% of patients didn’t have any complaints of intimacy and sexuality issues prior to their diagnosis. This shifted significantly after their breast cancer diagnosis, with 50% mentioning less sex drive and 40% less intimacy. In the partners group, 67% didn’t have complaints before the diagnosis, but 28% voiced concerns afterward. However, it must be noted that partners were very supportive of the patient throughout their journey.
This study demonstrates the importance of holistically understanding sexual and intimacy-related issues that patients and their partners face after a cancer diagnosis; issues that ultimately affect the patient’s quality of life.
OSP: Could you also please talk about the patients' understanding of clinical trials?
DV: This study examined the reasons behind the extremely low level (~3%) of clinical trial participation among the whole population of cancer patients. Clinical trial participation is crucial for medical advancement and is an important treatment option, at times the only one, for oncology patients.
Of the 290 study participants, 46% had not even heard of clinical trial participation as a treatment option, with 92% of that group expressing the desire to learn more about it. Among the 156 participants who were aware of clinical trials, 33% heard about it from medical staff, 26% from multiple online resources, and 25% through the Belong-Beating Cancer Together app. Only 8% of study participants had previously participated in a clinical trial.
This study highlighted the importance for the oncological community to not only inform, but personally tailor clinical trial information to cancer patients and caregivers, and stresses how digital health platforms are an important source for driving awareness of clinical trials.
OSP: Finally, could you tell us about the effects of the COVID-19 vaccine on cancer patients?
DV: This study was conducted during the first wave of Covid-19, before the Delta and Omicron strains, and was the first large study on the effects of the Covid vaccine for cancer patients using real-world data. We surveyed over 1,000 anonymous Belong users about their experiences after receiving the vaccine, and the study concluded that the risk of non-vaccinated cancer patients being infected with Covid-19 carried a 21.5 times relative risk in relation to those who were vaccinated.
About 90% of surveyed participants said they had received a Covid-19 vaccination. Only 0.41% of patients developed Covid-19, while 8.9% of non-vaccinated patients got infected.
Additionally, 97% of cancer patients who were vaccinated only experienced mild side effects, which included a sore arm, headache, fatigue, and high temperature. This lasted only one to three days.
We were very pleased to see the high level of vaccination among study participants, which seems to provide a "firewall" against the COVID-19 viral pandemic.
