In recognition of World Cancer Day, Daniel Vorobiof, MD, touched on the use of Belong.life, a patient-centric social and professional network, in collecting real-world data and providing patients with additional resources, and highlighted several real-world data studies that were conducted with the application’s data.
Belong.life is a patient-centered social and professional network that not only provides patients with resources to better understand and manage their disease, but collects real-world data on topics ranging from financial toxicity to clinical trial participation, according to Daniel Vorobiof, MD.
Vorobiof was a co-author on 4 studies examining real-world data collected from patients who used the application, with topics including how financial toxicity for patients receiving immunotherapy may be treated like any other adverse effect (AE),1 the management of sexuality-related parameters in women with early breast cancer,2 low enrollment rates on clinical cancer trials,3 and COVID-19 vaccination for patients with cancer during the early days of the pandemic.4
Vorobiof stated, “We look at things that are subjective. They’re not written by doctors in their medical records. We look at what the patient is saying and what the patient is feeling in an anonymous way, and they are free to speak about it. Real-world data didn’t emerge today or yesterday. There have been many clinical trials that were successful in a small number of patients, but when the same drug and same dose was given to patients who were not on a clinical trial once the drug was FDA approved and available commercially, the results were not the same; the [AEs] were bad, and the doses needed to be adjusted. That is the real-world experience.
“What we want to bring [to light] is all these hidden patterns and factors that the patients are sharing with us. They are very important for making any clinical trial a success but may not be looked at the same way that other parameters are being examined.”
As a part of World Cancer Day coverage, CancerNetwork® spoke with Vorobiof, a medical oncologist and chief medical director of Belong.Life, about how knowledge and education on these topics are important, not just for the patients, but for the medical experts providing care.
Vorobiof: Belong.life was created approximately 5 years ago with the aim of providing patients with cancer and their caregivers a place where they can contact professionals and other patients with similar problems that they may have, and get support, get education, get an understanding of what is happening to them because they’re starting a new life and a new chapter in their lives. Suddenly, they’re encountering lots of questions that are not easily answered by the doctor sitting in front of them. The app is a place where they can discuss things freely and in an anonymous way. I don’t just mean being [free to speak], but it is a free application. You don’t have to pay extra, which is already a problem when you have cancer and other considerations.
We started thinking that we can give patients guidance and can be like a GPS for the patients, but we have moved and grown to believe that we can become for the patient [a resource] instead of [them] going to Google and trying to find information from different sources. Here, they have information under 1 roof [which includes] talking to doctors, talking to other allied disciplines they may need, talking to other patients, and so forth. It’s quite a comprehensive group of entities that work together for the patient.
The application is international; we have within reach approximately 130 different countries. There are doctors who are working in many of these countries, and some of them like myself work with patients from all over [the world]. It’s not a local application, but very widely spread out. The other thing is any patient can register and become a member, what we call a ‘belonger.’ Patients, family members of patients, or both [can register] because sometimes caregivers and family members want to ask questions regarding a specific patient, and they don’t want the patient to know about it. They don’t want to ask certain difficult questions when they go with a patient to the doctor. But here they have an opportunity to ask a professional something related to the patient that can give them a second opinion from that point of view. It’s not meant to be a proper second opinion because we don’t always have all the details regarding those patients, but it can support an opinion from other doctors.
Patients can register and choose the group they would like to be part of. Let’s say a patient has prostate cancer. There is a professional urologist/oncologist, there is a medical oncologist, there is a radiation oncologist. All of these [experts] can be answering questions related to the patient with prostate cancer. The same patient may have other problems, or would like to know something about nutrition, or something about sexuality, but he’s afraid of asking the doctor because when he goes to the [speak] with the doctor, he goes with his wife. [it is possible] he will not like his wife to know certain things. Here, there is a venue where they can discuss [issues] freely and anonymously. From that point of view, it’s much clearer for the patient to obtain information. It’s hidden by this anonymity, and therefore, much easier to ask certain questions.
As you know, clinical trials are very important tools to determine the value of a new procedure or a new treatment for patients. I have been involved with international cooperative groups for longer than 30 years doing clinical trials and being the principal investigator of many of these trials. The main objective of these clinical trials is to shrink the tumors to kill cancer cells and help the patient from that point of view, which is perfect. But there are many other factors that influence the care and the success of clinical trials in these patients that they are not taking into consideration with the same importance as obtaining the response of a specific drug in a patient. We can say these are more control environments that produce synthetic outcomes, and they may not be reflective of real-life situations.
What we started seeing 2 to 3 years ago, even before the COVID-19 pandemic, was that many patients were concerned about the out-of-pocket [financial] implications of going into clinical trials. Whenever they had to go for treatment, one of the first things that the patients ask is, ‘Am I going to be covered for this?’ You find out that many patients don’t know about these [costs]. We looked at different groups of patients, specifically at patients receiving immunotherapy because immunotherapy is very expensive.
We saw that many of these patients were having other problems. Slowly, we started seeing financial toxicity as an actual AE of the cancer treatment and should be considered as such. We looked at patients with breast cancer and presented data at the advanced breast cancer meeting 2 years ago. We also started looking at patients with lung cancer and other cancers, which we presented at American Society of Clinical Oncology and European Society of Medical Oncology [meetings]. The bottom line is that we believe that financial toxicity, finances, and economics of treatment should be discussed openly with the patients up front. Doctors do not like to talk too much about finances. They are there to heal the patient, to treat the patient, and they don’t want to bring up something else, but this is becoming a problem. As we talk with patients about the possibility of losing your hair and what you can do about it or having nausea and vomiting as a result of the treatment and what you can do about it, and many other possible AEs, we should also talk about financial toxicity. Today, everyone is talking about this problem, and everyone is making patients aware of the possible AE that, until now, was somehow hidden.
We are seeing more and more, unfortunately, young patients with breast cancer. Body image is a very important [idea] in our society that can influence sexuality. Together with other doctors from local universities, we decided to look not just at the patient, but look at the patients’ partner, and [do] a comparison to see if what the patient is experiencing is supported by what the partner is experiencing, and what can we do or what doctors should do to improve the situation.
I must say that we were happily surprised that there are many patients who feel before they start any treatment, they don’t have any problems. But after or during the treatment, because of the AEs, surgery, and many external factors, they have problems such as less attraction, less libido, and less willingness to be with their partner. This correlates well with what the partners were saying to us. The difference was minimal, and it was interesting to notice that, through their cancer journey, patients were well supported by their partners in that regard. But there was a caveat, which was they did not have enough information to handle this new situation. They had to outsource this information because nobody was [telling] them exactly what could happen to them before or during their cancer journey.
Once again, I’m talking about before the COVID-19 era because things have changed since then. Patients knew about clinical trials, but not always and they didn’t ask doctors at the beginning when they became sick. One of the problems is that recruitment into clinical trials is very low. It is usually around 5% of patients and in some places it’s 3%. It really is a very low recruitment. That means patients do not ask much about it, and doctors sometimes forget to speak about the possibility of a clinical trial. We saw that a large percentage of patients and caregivers were never informed about the existence of clinical trials for the disease that that specific patient had. It comes down to knowledge and education, not just of the patient, but also of the medical staff. Patients were expecting to get that knowledge from the medical staff, and they didn’t, and they didn’t realize that they can bring questions to the doctor and ask, ‘What about the possibility of a clinical trial in my condition?’
This information came out just before the COVID-19 pandemic, and since then there has been a further drop in accrual for clinical cancer trials. It’s more difficult to manage, patients are trying to stay home, and it’s difficult to use telehealth for these patients. Hopefully, once we see the end of this infection, we will probably start seeing [accrual] numbers going up again.
This specific project was done during the first COVID-19 wave, not during Delta or Omicron, so it’s a little bit different nowadays. At that time, not many patients were vaccinated. One of the first recommendations [from the Centers for Disease Control] was that patients who were immunosuppressed should receive the vaccination. There was some misinformation, and not many patients rushed to get the vaccine. We decided to look into that, and although we saw that a large percentage of patients received the vaccination, there was a percentage who didn’t. When we started comparing [these populations], there was a large difference between the patients who were vaccinated and got infected and those who were not vaccinated and contracted an infection. Today, we know more about this, so this research is not breaking any news. But at the time a year ago, it was new. We saw a significant difference between those patients receiving the vaccine and those patients without it [in terms of] relative risk. If I remember correctly, [infection] was around 21 times more relevant in the non-vaccinated patients compared to the vaccinated. It was more of a backup to say yes, patients who are immunosuppressed undergoing chemotherapy treatment must be vaccinated. This was 1 year ago, and things have changed a little bit and people know more about it.
This is research that can be done through the use of artificial intelligence and machine learning, and we can accumulate a large amount of data in a different way. Clinical trials are looking at how a specific drug or a specific procedure affects the patient. They are done from the point of view of the physician, and the patient, and we take all the objective points that we can gather in order to measure the responses obtained with a new procedure or new drugs.