The Federal Trade Commission (FTC) issued a proposed order against online counseling service BetterHelp, Inc. Earlier this year, the FTC found that BetterHelp has been involved in data mining consumers’ sensitive health data and reselling it. Despite promises that it would not disclose PII, BetterHelp still revealed customers’ email, IP addresses, and health information to companies like Facebook and Snapchat. Such data management practices make even good software seem suspicious.
People are quick to mistrust software due to the history of sneaky data collection and unclear policies. According to a 2019 Pew Research study, about 81% of participants felt they had little to no control over the data companies collect.
The solution to data management with real privacy
Thankfully, a Raleigh-based data management nonprofit can lessen some of these worries and restore control to the user.
The Live Learn Innovate Foundation (LLIF) is a 501(c)3 nonprofit organization that offers unbiased database management. LLIF lets you control personal data, understand health better, and use data beneficially. LLIF’s mission is to improve personal data management while improving their users’ general well-being.
Founded in 2018, this nonprofit empowers users to control their data access and use. This is done without keeping and/or reselling personally identifiable information (PII). Therefore, LLIF can ensure the data is only used in ways that align with user intentions, its mission, and values instead of relying on third-party services. All LLIF software is rooted in individual data ownership, safety, and value.
LLIF improves data management
Tired of the data breaches and misuse of information, Jim French had a solution. By founding LLIF as a nonprofit, data can be protected as a donor-restricted asset. He used his experience in Cisco, zScaler, and other tech companies to build a better data management software for people.
You can now use the nonprofit’s web dashboard and mobile app, Best Life. The apps let users track life events, health, shopping, web activity, and notes. Think of it as your personal “everything” journal, which can help with preventative health measures and life planning.
The Best Life app intends to be a revenue-generating arm to support LLIF, which will continue to be a nonprofit.
Chairman and Founder Jim French wanted a better method of personal data management. This was especially so when trying to coordinate with 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, Mary French began showing low-level symptoms. Her symptoms were mostly dismissed by doctors aside from prescribing an IV and some basic 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. Mary French’s cancer wasn’t diagnosed until later, after she began to suffer more severe symptoms, but by then the disease had spread.
After that visit, Jim tracked all his mother’s health details including symptoms. He wanted to ensure that such misdiagnoses never happen again. Fueled by this life experience, in December 2021, Jim French and LLIF released the first production version of the Best Life app.
Practical coordinated care empowered by data management
French and his son began logging his mom’s activities and syncing health tracker data in the Best Life app. Using events for things they wanted to track, like medications, bowel movements, pain, food intake, and more, coordinate care got a little more manageable. With this app, they could 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 his blog post 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.”
Jim French
Symptom tracking approached like data management
A symptom diary helps users and doctors improve treatment.
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 peace of mind for patients. At the same time, a symptom diary provides a better understanding of the patient to 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.”
Software that helps track more than your health
The app does more than just health tracking. 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. French says LLIF will use AI to connect health and environment data for user benefits.
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 data, set and the AI can decide the best method to use to figure out patterns in that person’s data.”
Now make your data work for you
Another part of LLIF’s mission is to use the collective data as a direct advertising option 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. Instead, data is used to help these companies serve your interests. You receive actually qualified and helpful advertisements that matter to things you legitimately have an interest in. Promotions, discounts, and other perks make their way to your inbox and benefit you, instead of big data corporations like Google.
“All of the data is in the nonprofit’s database, and Best Life is paying LLIF to leverage that secure foundation, 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 for better data management
Best Life is free on Android and Apple app stores. The applications will be offered as a freemium in the near future, where users can have free features and subscribe to get an even more extensive analytics.
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.
Read the original post available here, written by Kaitlyn Dang of Grepbeat.