Folia Health is on a mission to collect better data. The US company’s co-founder spoke to NR Times about the data gap in neurological care, patient-centric research and the importance of keeping data in the hands of patients.
The healthcare sector is becoming increasingly data-driven as the likes of AI, remote monitoring and wearable technologies continue to develop at a rapid pace.
However, the founder of health-tracking app Folia Health, Nell Meosky Luo, told NR Times that while the industry continues to focus its energy on advanced data analytics techniques, more focus should be given to the quality of the data.
“There’s this theory that healthcare should be more data-driven but I think what a lot of people don’t talk about is the fact that we’re not collecting good enough data,” Folia Health co-founder and CEO, Nell Meosky Luo told NR Times.
“In general, neurological conditions tend to be very hard to measure. It’s very difficult to understand the full scope of the disease and the way that each individual patient experiences that condition and the heterogeneity among patients.”
This is especially true for neurological conditions.
“Most neurological conditions are a good fit for the platform,” Meosky Luo added.
“This is particularly interesting to us because there has been so much back and forth and research in this space. There is a very obvious unmet need in terms of therapeutic development and further research into what works best and the patients themselves have a very broad, wide-ranging experience.
The majority of neurological patients’ healthcare data is collected at the clinic, but this is just a small portion of a patient’s experience. Given the budget and time constraints in medical practice, patients may only visit their doctor a few times a year so gathering accurate data void of bias can be a challenge.
“You don’t get the full scope of someone’s experience because they have to then be able to recall what they’ve been experiencing and try to describe that to a clinician who then tries to collect that,” Meosky Luo said. “It’s like a game of telephone [Chinese Whispers] to try to understand.
For a condition like MS, symptoms can vary widely from week to week. Measuring someone’s true fatigue burden from a short appointment, for example, is almost impossible. Folia Health argues that this information should be recorded at the point when a patient is experiencing the effects of fatigue. The company calls this ‘home-reported outcomes’.
Meosky Luo said: “Imagine that instead of a clinician just asking you, ‘How have you been feeling?’, you’re able to show them a graph and say, ‘Since I saw you four months ago, this is what my fatigue has looked like. You can see it was really bad in May. Here are the reasons I think that might have been the case. This is when I went on that new treatment’.
“This is how we start to move toward actually data-driven care.”
“Information has to come directly from the patient”
Folia Health was born out of personal experience. The company’s co-founder, Nell Meosky Luo has a younger brother who was diagnosed 25 years ago with CVID, common variable immune deficiency, which prevents him from developing his own immune response to infections.
CVID is a complicated condition to treat and manage. This, combined with other autoimmune complications, has made her bother’s care journey long and winding. Much of his care was defined by the “guess and check” technique, which was not only frustrating and time-consuming, it also led to a lower quality of care.
“You end up [not] getting it right every time,” Meosky Luo said. “You’re not getting consistent, high-quality treatment that’s well-matched to what you need. This is something that I had noticed as a researcher was a big problem that was hard to solve across a variety of complex and rare diseases.”
Seeing her brother experience the challenges of a rare disease first-hand, Meosky Luo was struck by the lack of data that clinicians were working with.
“You’re looking at a group of people who have been measured primarily on clinical and claims data,” she continued. “[When] you’re trying to understand the outcomes of their disease on the basis of this data that are collected only at the appointment, you miss out on a huge amount of information that’s really relevant and important to get the full scope of their disease and understand what might work best for them.”
20 years ago, her parents used notebooks to log their son’s symptoms and response to treatments. This simple approach to tracking health data is what inspired the launch of Folia. Meosky Luo, along with fellow co-founder Daniel Toffling, sought to create a digital version of these notebooks so that the data can be captured, understood and used by clinicians and researchers.
“The hypothesis that we have is that information has to come directly from the patient and you have to find ways to make that easy for people to do,” Meosky Luo said.
Toffling had had a similar experience with his daughter but with a completely different condition. The pair realised that these issues were prevalent across conditions and began building a platform that could record these observations and capture them using structured multiple-choice questions that are personalised to specific conditions and patients’ individual experiences.
“You’re not answering the same questions as everybody else in your disease,” Meosky Luo said. “You’re answering questions that are relevant to what your particular experience of your disease is.
“It [has] the ability to literally track anything that you’re looking to track; fully comprehensive tracking abilities that are completely flexible to that individual need, as opposed to pre-structured tracking forms that are designed for the concept of an average patient in your condition.
“The hard part about building that is making it flexible so that everybody can use it, but also still keeping it very structured.”
The result is a platform that is highly individualised while still producing data that is structured enough to be used by the patient, their doctors and in clinical research.
Patients can create their own graphs and reports that can then be shared with their doctors. With their consent, users can also supply their data to research projects and receive compensation for the data they provide, an opportunity that most self-tracking platforms do not currently offer.
Connecting the data with clinical research
The research component of the platform focuses on two areas. Some projects aim to describe the burden of a particular disease to gain a fuller understanding of the different types of patients or phenotypes that can be defined within the population, and what issues are most pertinent to patients. The second area looks at new therapies and assesses their effectiveness in meeting patient needs.
The company is currently developing a research study in MS and has previously published work on Prader-Willi syndrome.
“Our studies are different because we’re looking at how the treatments are changing the symptoms that matter most to the patient, as opposed to focusing on traditional research methods, which are often a little bit more separated from what the patient’s care about,” Meosky Luo said.”
One of the key differentiators of Folia-run programmes is that patients are co-owners of their own data. Meosky Luo believes health information should belong to the patient and described society as being “behind” in its treatment of individuals’ data.
“We want them to have full control,” she said. “If they want to contribute that data to research, they should have the ability to do that. But they should also know where it’s going, what it’s being used for and when it’s being used for something that might generate an organisation money in some way, they should also be compensated for that because ultimately, they’re providing something of value.”
