Pioneering Platform for Collecting ‘Home-Reported Outcomes’
By Deborah Borfitz
November 18, 2025 | As anyone contending with a complex chronic disease can likely attest, a lot has been “left on the table” when it comes to opportunities to achieve better health outcomes, lower costs, and greater personal satisfaction with their medical care. Tens of thousands of patients have voted for change by registering for the Folia Health app, which allows them to track their symptoms and share data about their own healthcare experiences with their care team or research studies, according to Nell Meosky Luo, founder of the Boston-based company providing the first-ever platform for the collection of home-reported outcomes (HROs).
HROs are enabling the creation of more data-driven care, she says. It’s a “fundamentally new” way of collecting information on how people are feeling in their everyday life in a structured, database format that allows it to be immediately graphed and used.
“We’re not just trying to take what happens in the clinic and make it happen at home ... [but] gather information about what people are noticing and know about their health, how they’re feeling, how they’re operating in their lives, and how their treatments are working for them or not,” says Meosky Luo. The knowledge is collected in “a personal way that respects the differences between people but also allows us to see broader trends across people and understand their conditions better.”
The HRO model is highly complementary to the type of information being collected by forums offered by online communities such as PatientsLikeMe, disease-specific Facebook groups, and even Reddit threads, she says. These and a multitude of more formal and managed groups (e.g., Visible and Inspire) collect information about people’s narrative experiences and provide “a great opportunity for social listening, understanding the sentiments people have around their care and the types of themes that emerge from that.”
The gap Folia is filling is to take the granular information people have historically written in their own notebook—for example, what it felt like to have a lupus flare, the symptoms like pain, joint swelling, GI distress, or other issues they experienced, and if what they did next helped or if they needed more care—and put details about those health outcomes in an actionable format, says Meosky Luo. For people with cancer, the ability to collect data on how they’re doing at home and quickly get that information back to their care team “can increase survival time and decrease the likelihood of progression.”
A single platform is being used to collect data in a common way across conditions, including ones that haven’t yet been fully diagnosed, she continues. “The types of questions that exist across diseases tend to be very similar, which means that the design of our research programs, the protocols, [and] the analysis plans tend to be relatively similar.”
The themes of those questions revolve around the burden of the disease, unmet needs, the current therapeutic landscape, and outcomes (i.e., inventory of symptoms or behaviors) of interest to patients and their family caregivers, as well as the impact of a therapy on the burden of disease versus other available treatments and the change over time as measured by HROs.
‘Radically Transparent’
The three surprisingly differentiating features of the Folia Health approach are direct consent for all uses of the data, financial recognition of the value of home-reported data offered to users both in and out of study contexts through a revenue share program, and the fact that user data does not get sold or shared for marketing purposes. “We are extremely intentional about the way that we approach our use of any information about anyone’s health, and are what we think of as radically transparent,” says Meosky Luo.
This means “we do nothing with any of the information people put into Folia that they do not know about,” she adds, which is an emerging concept in the health data ecosystem. At the opposite extreme are healthcare provider systems that do what they want with patients’ data because consent forms are signed as a matter of routine; it feels like a prerequisite to see the doctor with no time to properly review the broad data-sharing they are permitting with their signature.
That information goes to a “myriad of places and it can be used for all sorts of research activities but also revenue-generating activities ... that patients are not directly aware of and in many cases are not even that easily traceable by those individuals,” says Meosky Luo. Folia, in contrast, has people directly consent for their data to be used study by study. The only time their data can be used without their explicit consent is when the company is doing internal product research, as is covered in the terms and conditions when downloading the app.
And for the external research studies users opt into, Folia runs interim and final “participant reports” so they can stay apprised of what’s being learned, she notes. This can help registered members better understand how other patients are living with the same condition, the symptoms they are experiencing, and the treatments they’re using for their own information.
The entire process is patient-controlled and designed to fill in the gaps about “what’s going on all the days when you’re not in the clinic ... or undergoing any clinical testing,” Meosky Luo says. The primary value of study participation for members is being able to use the collected data for their own care, but a secondary value comes from the “Data Dividends” Folia Health pays based on the expected amount of time they’ll be spending for the additional research requests, which can vary by the month.
Data Dividends are an evolution of participant honorariums that many organizations now offer when conducting direct research, she says. “It’s a direct revenue share program, which means as our revenue increases our payments increase. It also means that as a user of Folia you are ... eligible for Data Dividend payments even if you are not in a current sponsored study ... because, ultimately, the data that you’re generating is valuable.”
On the app, users can see what they can earn by contributing data and their accumulated rewards over time. Higher amounts are paid when people are in research studies requiring them to do extra tracking, to recognize the value of their time, she adds. Payments are made monthly in the form of gift cards (e.g., Amazon, Walmart, and Starbucks) based on an individual’s level of self-reporting.
The goal with the Data Dividends is to make the business model clear to everyone, says Meosky Luo, getting back to the “radical transparency” of the Folia approach. Research is the company’s revenue-generating activity that enables the app to be free for people to use.
‘Compelling Proposition’
The moment data is collected in Folia, the information is transformed into a graphical dataset that users can see in their own app, explains Meosky Luo. People can immediately understand their trends over time and share those insights with their doctor. “We can also immediately use these same data points for research studies ... in a structured, predictable way that allows us to easily publish research-grade data that not only shows the sentiments of the population but the cause [disease state] and effect [of drug treatment]. We can also stratify that by how people are experiencing their disease burden [e.g., symptoms and flares, visits to the ER, and nonpharmaceutical remedies].”
Folia Health was born nine years ago out of the personal family struggles of Meosky Luo, whose brother has the rare immune deficiency disease CVID, and her cofounder Dan Toffling, whose daughter has Down syndrome. Their shared difficulty was understanding for themselves “what’s working and what’s not” and being able to communicate that to the clinic effectively.
Their motivation for starting Folia is shared by users, Meosky Luo says. “When you give people a platform that they are happy to use ... it is a much more compelling proposition for them to also participate in the research,” she adds, noting the limited time and energy of individuals living with a complex disease.
“When you’re using the app and part of one of our research studies, it should feel like you are predominantly solving that problem for yourself,” she says, noting that her brother uses Folia to collect information. “The whole point of our existence is to make it possible for people to get better clarity and ... ownership of their care and make sure that it is working for them.”
Research-grade Data
Thanks to the high volume of data collection Folia Health has done across years and conditions, it understands the patterns through which people collect data using the platform, their needs when doing so, and how well that correlates with existing clinical measures such as traditional patient-reported outcome instruments, Meosky Luo says. The platform also collects a high volume of observations per participant—hundreds if not thousands of individual answers to questions per month—allowing its data analyses to be convincing.
“The data is collected in a very consistent and traceable method that’s repeatable, so we’ve maintained the same methods, and we’ve only improved them in a very discrete and well-tested manner over the last nine years,” she says. “You can compare our datasets across time because everything’s collected in the same way, and you can also understand how our data has been previously used for other research that has been published in peer-reviewed journals as well as through conference presentations.”
Moreover, the platform has a data privacy and security backbone that includes compliance with 21 CFR Part 11 of the U.S. Food and Drug Administration, making it possible for the data to be used to inform regulatory submissions, says Meosky Luo. Folia has worked with a large set of customers and conditions to that end, including top 10 pharma companies, middle market and biotech companies as well as academic and foundation partners.
Historically, the projects were primarily switching studies evaluating the safety and efficacy of moving patients from one therapy to another, newly launched one, she continues. But Folia has been doing an increasing number of earlier phase research studies seeking to understand the best way to measure the effectiveness of a therapy based on what matters most to patients and identifying the strongest areas of market need. Folia also actively collects HROs for late-stage phase 3 trials.
Folia Health is a founding member of the CancerX initiative, a public-private partnership launched in early 2023 and hosted by the Moffitt Cancer Center in collaboration with the Office of the National Coordinator for Health Information Technology and the Office of the Assistant Secretary for Health. Since then, Meosky Luo shares, a family member has been diagnosed with cancer, and she has gained firsthand experience in helping with the associated decision-making and “trying to understand what comes next.”
Among the many ways Folia Health can assist people with cancer is giving them more clarity on the tolerability of the therapies they’re on, helping them understand and alleviate their symptom burden, and providing a better way to communicate what they’re feeling and what they need from their care teams during both the active interventional treatment phase and the longer-term survivorship period, says Meosky Luo. Ensuring they get a “precise and personalized and timely response to how they’re doing ... is a key area of focus for us.”
Market Potential
About 40,000 people, and climbing, are using the Folia Health platform, Meosky Luo reports. They learn about opportunities to contribute their HROs through push notifications on the app as well as emails and messaging via a growing social media presence. “We communicate with people the way they want to be communicated with, so they’ll let us know what’s best for them.”
Folia is focused on growing a handful of condition areas of greatest interest to the current user population, she adds. These include autoimmune diseases like lupus, Sjögren's syndrome, and eczema; rare kidney conditions such as complement 3 glomerulopathy (CG3), IgA nephropathy (IgAN), ANCA-associated vasculitis (AAV), and lupus nephritis; and hematology conditions like sickle cell disease and paroxysmal nocturnal hemoglobinuria (PNH).
During the company’s early years, it was financially supported by a group of mostly Boston-based angel investors, says Meosky Luo. Folia recently closed a $10.5 million Series A funding round led by S3 Ventures, alongside longtime partner Crosslink Capital and specialist fund Create Health Ventures.
The motivation to invest has been driven by a mix of personal healthcare experiences, belief in the HRO model, and the “huge amount of wasted and inefficient spend on therapeutic development ... [by] getting the wrong therapies to people and then having to switch,” she says. “There is a huge market opportunity for improving the care that people receive ... and, frankly, how many dollars need to be spent to get the right care.” Folia is providing the kind of data needed to make an improved U.S. healthcare system possible.
Since the people using Folia have a lot of research questions of their own, Folia has just launched a community insights research initiative known as Mosaic to start providing answers based on aggregated data from others with similar conditions. The company has announced that the program is currently active for users with eczema and PNH, with plans to expand to lupus and sickle cell disease in 2026.
Pharmaceutical and academic sponsors will be able to get their own longitudinal data feed, based on what people want to track for their Mosaic program, Meosky Luo explains. “For example, people in Mosaic for eczema are tracking their use of different topical steroids,” which would be of keen interest to anyone developing a new eczema therapy intended to decrease the need for those topical agents.
“There has been faster-than-expected interest [in Mosaic], so we’re figuring out how to balance that against our existing study model,” she notes.
Future Direction
The building of Folia Health has been an incredible nine-year journey that began before the pandemic and popularization of decentralized clinical trials, says Meosky Luo. “We started being very far ahead of where the market was, doing a lot of educating and a lot of building awareness about what could be done and how much people want to collect this data.”
The first four years were heavily focused on iterative product development and understanding how best to collect journal-type data in a structured, multiple-select format on a smartphone, she says. This was followed by Folia’s first national research study in a 2021 collaboration with the Cystic Fibrosis Foundation to understand the impact of Trikafta on the way people experienced their care and their interest in continued use of other supportive therapies and the safety of doing so.
“From there, we’ve run an increasing clip of studies in partnership with our users ... building the scalability mechanisms to be really good at this across different types of research studies and different types of conditions,” says Meosky Luo. “The next four to five years we’re interested in doing more to support individuals who are living with complex diseases, whether or not they are currently in a research study with us, because we now have the resources to be able to do that.”
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