Two young founders on a mission to get valuable data about complex illnesses which are not now easily captured. Nell Meosky Luo and Dan Toffling of Folia Health tell the story of how their startup came together and where it’s headed.
Nell Meosky Luo bio.
Dan Toffling bio.
What Folia Health does. Patients dealing with complex or chronic illnesses possess a wealth of data that is not now transmitted via the five to ten annual interactions a patient has with a physician.
Both Nell and Dan have seen the problem in their immediate families.
Built an online platform that patients can use to record important information.
This information can be used to guide the patient’s clinical care and, in anonymized form, can be valuable research data.
Sal notes that the user experience of their platform looks very accessible. Folia has spent a lot of time on getting the right interactions with patients.
How Folia Health came about. Nell notice that researchers did not have access to this kind of data that her mom collected on her brother’s condition. This gave her the idea of finding a way to capture that type of data.
Existing data on long-term impact of therapies is usually indirect such as insurance claims statistics.
Nell worked on the idea for a year then advertised for a co-founder on BostonStartupsGuide.com and connected with Dan Toffling.
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How Folia Health plans to go to market.
Company is emerging from exclusive product focus to focusing on going to market as well. Referral by people in the disease communities is one channel, another is working with clinics. Folia is initially concentrating on Cystic Fibrosis which has highly motivated and organized patients and families.
Dan uses Folia with his daughter who has Down’s Syndrome. Dan’s daughter is eager to cash in the certificates for Starbuck’s Cake Pops that Folia Health provides to users to increase engagement.
As a user, Dan values the “appointment guides” the platform provides to summarize the information recorded and make it usable at a doctor visit.
Makes patients the stewards of their own information and provides continuity when a patient changes doctor.
Folia is very transparent about use of data collected and gives patients control over their data.
Sal talks about startup Healthjump which works with Electronic Health Records. Link to interview of Healthjump founder, Martin Aboitiz: Interview with Healthjump Founder Martin Aboitiz
Nell makes the point that EHRs are really about helping providers get paid by insurers and only tangentially about recording information that can be used to treat patients.
Folia plans to make money by selling the anonymized data their system collects to stakeholders who need more data about how their products or services perform with patients. These include providers, pharmaceutical companies, insurance companies and academic researchers.
Sal brings up his interview with Keith Elliston, founder of Axiomedix in which they discussed the startup combining patient records with their genomic data in an anonymized data base for research (Keith Elliston Episode and Page).
Dan Toffling credits users for their help in making Folia Health’s platform user-friendly.
Dan got into computer technology because his father was an engineer. He emphasizes the need to acquire technical expertise before trying to do things on your own.
The example is given of Bill Gates dropping out of college to start Microsoft kind of obscures the fact that he had been coding since an early age at a time and was a highly-skilled software engineer when he dropped out of Harvard.
Another turning point of Dan’s career was dealing with the numerous medical procedures his daughter needed. This shifted his focus to wanting not just to make money but to contribute to making the care his daughter and others like her receive.
Nell grew up observing her mother’s care of her brother who has an immune deficiency. Because of this she has been thinking about the problem of gathering data from patient experience for a long time.
It intrigued Nell that medical decision making in her brother’s case was not really data-driven because of the paucity of usable data.
Nell got advice that being a medical doctor was not the best way to pursue her interest.
A project at MIT showed her the possibility of dealing with people’s health at the population level. This led her to transfer to Yale University.
Dan speaks to the importance of working with people who are invested in the goal you are trying to achieve.
Nells advice to founder in digital health: (1) avoid the temptation to be too conservative by recreating in digital form the processes as they exist in the non-digital world, and (2) avoid the opposite temptation of “swinging for the fences” in creating digital processes which are unmoored from the reality of the problems being addressed. Nell also spoke of “following the river” rather than trying to “climb the mountain”, ie follow the easiest path.
Dan emphasized the importance of respecting patient ownership of data and also understanding the monetary value that it can have.
The choice of Cystic Fibrosis as the first disease on which to focus was entirely serendipitous; it came from meeting a CF father at a Mass Challenge event. It has proven to be an excellent choice since the CF foundation is well organized and funded. Things moved so fast that they got a pilot started in three weeks, an unusually short time in the medical space. An example of following the river rather than trying to climb the mountain.
Folia is now getting pulled in by foundations for other conditions.
An important milestone for Folia: a patient recently brought in a full year of Folia-recorded data to her annual visit with her doctor.