Socos Foundation Data Trust

In a legal setting, trusts are entities in which some people (trustees) look after an asset on behalf of other people (beneficiaries) who own it. In a data trust, trustees would look after the data or data rights of groups of individuals. And just as doctors have a duty to act in the interest of their patients, data trustees would have a legal duty to act in the interest of the beneficiaries.

– MIT Technology Review

I believe in human potential—health, education, and human dignity—and that belief not predicated on selling data or invading privacy. And so I have founded an independent nonprofit, a Socos Foundation Data Trust, that holds all of the data shared by users across all our many projects in a legal trust. Its responsibility is not to me, my research, or any of my companies, but solely to the users and our shared mission to foster health and human potential. Neither we nor any of our partners can ever sell your data because we don’t own it—you do.

To learn more or even become a member of the Data Trust, just follow this link.

A data trust is a legal structure designed to protect and manage sensitive data on behalf of individuals, organizations, or communities. The Socos Foundation Data Trust serves a number of unmet needs for individual users and organizations:

Protecting privacy: By placing control of data in the hands of an independent third party, data trusts can help to safeguard the privacy of individuals whose data is being collected, processed, and used.
Ensuring equitable distribution of benefits: One of the mandates of the data trust’s board is to ensure that the benefits of data are distributed equitably, especially in cases where data is generated by marginalized communities who may not have the resources or power to protect their interests.
Promoting transparency: Algorithmic transparency comes from clear rules and guidelines for how data will be collected, processed, and used. The data trust’s independence supports a more transparent decision-making process for all stakeholders.
Encouraging innovation: Data trusts can provide a secure and trusted environment for organizations to access and use data, which can encourage innovation and the development of new products and services that benefit society. Part of Dionysus’s motivation in founding the trust is to foster independent, scientific research and philanthropic development for the public good.
Establishing trust: Data trusts can help to establish trust between data providers and data users by creating a neutral and impartial entity that manages data in an ethical and responsible manner.

Overall, data trusts can play a crucial role in ensuring that data is used for the benefit of individuals and society, rather than being monopolized by a few powerful actors for their own benefit.

We've donated all of our Mad Science projects at Soos Labs into the Trust, and we've also made some new partners:

Dionysus Health: Our first external ecosystem partner

Epigenetics to Understand Your Homonal Health

Dionysus Digital Health combines ground-breaking epigenetic home testing, a powerful new app with supportive artificial intelligence, and unsurpassed levels of data trust to improve your mental health and protect you and your family’s future.

"Learn about Enlighten:" an epigenetic test taken during pregnancy that predicts future postpartum depression risk.

Muse: Our first internal ecosystem tool

Muse is an app and SMS system that uses machine learning to send targeted, play-based activities for parents and kids to engage with each day. There is no gamification, no study material, and no dashboards. Simply answer daily questions, record memories, and submit photos of artwork to teach Muse about you and your child. As it learns, Muse will provide a daily activity designed to improve your child’s productivity and well-being, integrated across their life.

Studies have shown that metacognition, general cognitive ability, socioemotional competency, creativity, and curiosity–the Muse curriculum–significantly affect life outcomes and produce happier, healthier, more productive lives. The goal of Muse is to extend existing educational initiatives into the home in order to drive positive socio-emotional and cognitive development throughout children’s lives.

Jitterbug

Another internal project, Jitterbug was one of the world's first AI systems for diabetes. More meaningfully, it was born out of the Type I diabetes diagnosis of the founders' son. She hacked her son’s medical equipment and developed a novel machine learning algorithm to apply to the resulting medical data. Within a month this had grown into the “Jitterbug” system, which could predict low blood glucose events more than an hour into the future.

By changing her son’s treatment based on the algorithm, Dr. Ming found that her son spent 40% less time with too much sugar in his blood without any increase in dangerous low blood sugar episodes.

Mental Health Research

The 3 million bipolar sufferers have dramatically higher suicide and institutionalization rates, making it the costliest mental health disorder globally. We've experimented with using realtime mobile data from bipolar sufferers to build a powerful model able to predict manic episodes up to a month in advance. The original version used only GPS and accelerometer data. Now, with the Trust, you can opt-in to sharing texts or browser history as well with the goal of predicting the onset of manic episode and give you time to prepare.

Optoceutics

Optoceutics is developing cutting-edge technologies to help fight neurodegenerative diseases and mental health disorders. It was established in 2018 as a university spin-out based on a world patent from collaborative research at Danish Technical University (DTU) and University of California Berkeley (UCB) on the medical effects of masked light brain stimulation.

In particular, Optoceutics is investigating new approaches to Gamma brain wave stimulation for Alzheimer’s Disease. They are conducting a clinical study to investigate the potential effect of masked 40 Hz flickering light on Alzheimer’s disease patients. We are also collaborating on measuring masked light stimulation’s effects on major depression and anxiety disorders.