Earlier this year, the Federal Trade Commission (FTC) issued a proposed order against the popular online counseling service BetterHelp, Inc. for its involvement in data mining consumers’ sensitive health information for advertising. Despite promises that it would not disclose personal health data other than to provide counseling services, the FTC found that BetterHelp still revealed customers’ email and IP addresses and health questionnaire information to third parties such as Facebook and Snapchat to advertise their platform.
Surreptitious data collection and disclosure are issues that most people struggle with when looking to trust an application that will use their data to help them. According to a 2019 Pew Research study, about 81% of those studied felt that they had little to no control over the data that companies collect.
Thankfully, a Raleigh-based data management nonprofit with a public-facing app can lessen some of these worries and bring the control back to the user.
The Live Learn Innovate Foundation (LLIF) is a 501(c)3 nonprofit organization dedicated to offering unbiased database management for users to regain and maintain control of personal data, gain intuitive insights about their health and environment, benefit from personalized advertising and more. Their mission is to improve personal data management while further improving the general well-being of their users.
Founded in 2018, this nonprofit enables control of access and usage of its data through and by the user to serve them at their best interest, without keeping and/or reselling personal identifiable information (PII). Therefore, LLIF can ensure the data is only used in ways that align with their mission and values instead of relying on third-party services.
LLIF built and hosts the my.llif.org web application and now its Best Life mobile app, both of which provide members with a consolidated personal data pool, rooted in individual data ownership, safety and value. The applications help users track their lives in a private Facebook-like feed including vitals, environment changes, health issues, shopping, entertainment content and diary notes. Think of it as your personal “everything” journal, which can also help with preventative health measures and life planning.
The intent is for the Best Life app to be a revenue-generating arm to support LLIF, which will continue to be a nonprofit.
Chairman and Founder Jim French found it frustrating that there wasn’t a proper way to track health data with or by medical professionals. He felt this frustration the most during and after his mother was diagnosed with Stage 3c colon cancer.
In the summer of 2019, she began showing low-level symptoms, which were mostly dismissed by doctors aside from prescribing an IV and some medication. She had a similar experience at her annual checkup with her primary care doctor, with her concerns being largely ignored rather than explored fully. The cancers wasn’t diagnosed until later, after she began to suffer more severe symptoms, but by then the disease had spread.
Since her unproductive annual visit, French began keeping track of his mother’s every symptom, heart rate, sleep score, etc. to make sure that such misdiagnoses never happen again. In December 2021, French and LLIF released the first production version of the Best Life app.
French and his son began logging his mom’s activities and data in the Best Life app using events for things they wanted to track, like medications, bowel movements, pain, food intake and more. With this app, they were able to see the latest real-time treatments and take appropriate action and communication to work together to help French’s mother.
“I’m more frustrated with our ‘treat the symptom, not the problem’ reactive healthcare approach,” French said in this blog post he wrote about his mother’s treatment. “I vowed that if LLIF could help to provide earlier detection for just one other mom, it would be worth my life savings and decade of my life.”
Having something like a symptom diary is important and beneficial for not only the person using them, but also the healthcare providers that can use the data for their own research.
In a blog post written by RiAnn Bradshaw, LLIF’s marketing director, a symptom diary or having something to keep track of your symptoms can provide a peace of mind for patients, while also providing a better understanding of the patient for the doctor. With an app like Best Life, patients can track anything from headaches and sleep to food and exercise.
“People don’t have to exist in pain constantly,” Bradshaw said. “There is not a doctor that has time to run analytics on your health data but [the data] is present, the capability to run analytics on them is there and you can solve a lot of problems that way.”
Track more than your health
The application can also be used in more ways than just tracking your health. LLIF’s platforms can also be used to keep up with your pets’ health, the movies you’ve seen, the weather of the area you’re in and more. With artificial intelligence, French said that LLIF will build correlated relationships between health and environment data, so that the user and eventually everyone in the community can benefit and learn from.
For example, if a user logs a migraine, the app can track backlogs to find out what caused it. The platform will check if there is a correlation between the migraine and every other event logged, like lack of sleep, amount of coffee, barometric pressure, change in weather and more, in a stack rank of most- to least-correlated.
“I started looking at AI as a way of picking a method based on the data to do the correlation, and that can change over time,” French said. “I can look at this set of data and the AI can decide the best method to use to figure out patterns in that person’s data.”
Another part of LLIF’s mission is to use the collective data as a direct advertising option for their users, without exposing any PII. The non-identifiable data logged by users can be used to help companies target their products more effectively and specifically. For example, a sunscreen company can target members based on the number of sunny days they experienced last year or a running shoe company can target based on the number of miles a member walks or runs.
With LLIF, your data is not sold to other companies but more so used to help these companies understand your issues and serve your best interest.
“All of the data is in the nonprofit’s database and Best Life is paying LLIF to use that database, where that data is fully encrypted and anonymized before it leaves anything that has to do with that nonprofit,” Bradshaw said. “We built a profit product on top that allows people to actually access their data, consolidate everything, save it, use it across devices and have insights and analytics given to them that are not sponsored.”
Best Life is currently available for free on Android and Apple app stores. The applications will be offered as a freemium, where users can have features for free and then subscribe to get an even more extensive list of features. With this app and more future data, LLIF hopes to build on the health data marketplace for experts, researchers and developers to build and use the extension to conduct clinical studies on more accurate and community-centered data.