Combining PROs And Clinical Data To Benefit Cancer Patients & Researchers
By Ed Miseta, Chief Editor, Clinical Leader
PatientsLikeMe offers a platform for patients to be able to measure their levels of health and sickness over time. According to Martin Coulter, CEO of PatientsLikeMe, the idea is not only to provide patients with a way of tracking their own journeys in sickness and care (patient reported outcomes [PROs] such as insomnia and fatigue), but also be able to measure the impact of interventions.
“The benefits are obviously amplified when, as a patient, you’re able to find patients similar to you through a filtering system,” says Coulter. “We have 400,000 patients registered on our platform, and it allows patients to filter results to find patients just like them and to understand their journey. They are then able to discern whether their treatment regimens (drugs and interventions) are similar or different.
PatientsLikeMe uses a powerful platform with a user-friendly interface that makes it easy for patients to access and use. The platform is powered by an informatics database that tracks patient information, including clinical data, lab and imaging results, physician notes, and, increasingly for many conditions, molecular data as well.
“We capture that information in a science-based, quantitative manner for medicines,” says Coulter. “We’re taking the science and research and translating it into something that patients can consume.”
Collaboration Brings Information Together
One area of interest for PatientsLikeMe has been lung cancer, particularly the aspect of trying to understand it from the patient’s perspective. PatientsLikeMe wanted to understand the journey; what it’s like to have lung cancer and how patients must deal with diagnosis and treatment.
Earlier this year PatientsLikeMe had the opportunity to collaborate with M2Gen in a real-world oncology study that combined clinical, molecular, and patient-reported data. This would help researchers develop more targeted treatments and help cancer patients better navigate treatment decisions.
Cancer researchers will combine patient-reported data shared by PatientsLikeMe members with the molecular and clinical data provided by patients treated at two National Cancer Institute-designated cancer centers: Moffitt Cancer Center and The Ohio State University Comprehensive Cancer Center – James Cancer Hospital. The two centers account for about 50,000 patients, a good number of whom suffer from lung cancer.
“The idea behind the collaboration is to take the clinical and molecular data that exists on lung cancer patients and combine it with data on the patient journey and experience,” says Coulter. “By matching and cross-referencing that information, we believe providers will have access to information which will allow them to answer questions they wouldn’t have been able to answer before. They will be able to see how patterns in the clinical and molecular data are manifesting themselves in patients. We believe this holds tremendous potential for both patients and researchers.”
The real challenge for PatientsLikeMe will be helping patients to get value out of understanding not only their own data, which is something the group does on a daily basis, but understanding how to start incorporating what patients can learn from the clinical and molecular data in a way that gives them a better sense of the options available to them and how to choose the appropriate path.
Get Into The Mind Of The Patient
At the heart of the collaboration may be a true effort to become patient-centric: understanding why patients do what they do. Some patients may experience fatigue and insomnia while on one treatment versus another. Coulter notes this might cause a patient to stop taking a particular treatment after only a few weeks. The problem is physicians often do not understand why. This collaboration may finally start to answer some of those questions.
“We believe we will be able to bring greater clarity to that patient experience,” says Coulter. “We will have insights into patient reactions to various treatments, and we can start developing norms that can be pushed into the conduct of the research and decisions around setting up trials. More importantly, it will impact patient support services and potentially help us acquire more knowledge around the standard of care and how to best treat patients.”
Oncology is certainly a good fit for this type of collaboration, considering the advances being made in precision or personalized medicine. Treatments in this area carry a great deal of urgency and a tremendous amount of attention is now being paid to cancer. As a result, the search for cures is increasingly segmenting smaller and smaller subsets of the population.
Coulter believes we are just beginning to understand the patient experience and how they respond to different medicines. In most diseases, researchers still do not have a good clinical biomarker. There may be proxies or a biomarker that explains some of the disease but not everything they need to know. He notes this is why the patient experience becomes a very important factor. That patient experience, including the patient response to medications and interventions, is critically important.
“Ultimately we have to be able to measure what patients are responsive to, and we can only understand that when looking at their data and experience,” adds Coulter. “all of this boils down to the experience of a single person, and our platform provides that part of the equation. Adding the patient experience data will also be important in discussions pharma will have with payers and providers. We have to understand the context in which those drugs are going to work so that patients can be prescribed treatments that will give them the best chance of success. We’re excited, and we’re looking forward to seeing what value we can bring.”