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Learning from experiences: Folia Health CEO on working towards a better future for healthcare

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The Folia Health app allows patients to be able to track health experiences such as symptoms, outcomes and treatments to gain insight into your health.

“Manage multiple conditions or people, whether you’re a patient or a caregiver, all in one place”

By making daily records using Folia Health, after a few weeks you will gain a better understanding of how treatments impact your health, as the app will build graphs and tables to clearly display your recorded data and what is working for you.

The app also allows the user to be able to use other key sources of medical information, in order to create a full snapshot of their health. As well as creating a printable guide patients can share with their healthcare expert to display what is important and working for their health.

Here, SR Times speaks with CEO and founder, Nell Meosky Luo to discuss the inspiration behind the app and what Folia Health’s ultimate goal is.

SR Times: What was the inspiration behind Folia Health?

Nell Meosky Luo: “This all started six years ago, after a long time of being interested in the general topic.

“I have a younger brother who has a condition called common variable immune deficiency (CVID) and he has a lot of trouble fighting off infections on his own. What’s interesting about the disease is it used to be thought of as just your immune system under activating, but a lot of these folks including my brother had been found to also have overactive immune systems in certain situations.

“Going through, the long process of the diagnostic odyssey and then finding treatment plans that would work at different points in time and trying to understand what would be most likely to work for him specifically. Obviously, everyone is different from each other.

“That’s been a life’s work for my family and so one thing that I had been really frustrated about really early on in my life was how difficult it was and continues to be for my brother to get care that is specific to what he is experiencing.

“Ultimately, the way the healthcare system is built in the US, and after doing some work in the UK healthcare system for a bit, I know it is better, but not all the way better, as it is difficult for a patient to be treated as an individual on the basis of what their burden of disease is, and what works for them. As so much of our health care system is built around this idea of kind of one size fits all.

“That works for some people, because they happen to be in that sweet spot. However, the vast majority this is not the case.

“Human bodies are very complex. People don’t react to things the same way and they don’t experience their diseases the same way. 

“So the concept of Folia is that we are capturing information about what each person experiences with their disease or the multiple diseases that they might be living with, and we do that in a way that is flexible to the idea that people may experience things differently.”

How does Folia Health help stroke patients?

NML: “When you are someone living with a stroke survivor, you aren’t required to answer all the same information or collect all the same information on our app form, as someone else with stroke, we have a set of questions that we suggest to people on the basis of their condition. 

“We give recommendations based on the fact that you are a stroke survivor, maybe these are types of things that you’re interested in keeping track of for yourself. Ultimately, you have the ability to select what it is that you care about and decide the things that we suggest may not be relevant to you.

“You can also search our extensive knowledge base of other types of things that you might be interested in tracking that we didn’t know might be relevant to stroke. Maybe it’s just relevant to you or perhaps it is actually relevant to lots of people with stroke.

“An example of that is we do a lot of work in cystic fibrosis. One of the things that we’ve learned through five years of work in that condition is that a lot of people experience different gastrointestinal symptoms, even though it’s thought of as primarily a lung disease.

“Some people experience nausea, some people experience, appetite loss and issues with their bowel movements are there is a whole list of things.

“You want to give people the ability to collect information that is broad enough that they’re able to capture everything that matters to them, but also specific enough that it’s only what they care about. 

“At the end of doing this selection, you then end up with a set of questions that you can answer on a regular basis as you experience your disease. To say this is how I’m doing this is how my treatments are working or not working for me.

“You can take that information and our platform creates graphs and reports that you can share with your healthcare provider.”

How does Folia Health contribute to research?

NML: “You can contribute your reports and data to research, which we pay you to contribute to. So, if you want to be part of a research study looking at, maybe a potential particular innovative intervention in stroke or trying to understand more about the stroke experience, if we have a sponsor who is running a study like that, you can get paid to contribute the data that you’re collecting for yourself to that research study.

“That’s the business model, the platform is that we get paid by the sponsors to run those studies.”

Where is the Folia Health app available?

NML: “The app is available anywhere that you can find the app store, I think it’s around 90 countries and we are currently mostly English and we do a little bit of support in other languages.”

What ongoing research is Folia Health and its users contributing to?

NML: “We have studies across five different rare diseases right now, as well as two diseases that are not rare, like stroke. 

“We also have our own internal studies that we run, we’re actually running one right now in four different condition areas and that is user driven research. 

“I think one of the other cool things about what we do is that when people on the platform have their own research questions that they want us to look into, we will talk to them about that and then if enough people are interested in it, we’ll actually run the study internally. 

“So we ask people if they want to sign up and then we will do the data collection to sponsor the study on our own.”

What is the ultimate goal of Folia Health?

NML: “We want everything to be available in one place to have a single source of truth for that patient and their family to be able to see what’s going on for them specifically, and then share it so they can get better care.

“We think that if that’s possible, then the other really nice benefit to it is when you have all the information in one place, it’s easy to share, you can then aggregate it for research very easily. 

“Instead of having to go find people every time you want to run a study, having to ask questions over and over again, if people have already answered, you can have a single repository where people can opt into participating in studies and their data can be used, without creating so much overhead and lead time for it.

“We are learning things that people do not know and I think that’s really rewarding, to me personally, because we’ve spent a lot of time and effort on it.

Find out more about Folia Health on their site, here.

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