To learn more about Bitmark’s technology – the likes of which have been proposed as one solution to clinical trial data sharing challenges – Outsourcing-Pharma.com talked with Sean Moss-Pultz, CEO of Bitmark Inc.
What is the rationale behind the partnership with UC Berkeley?
Bitmark’s mission is to empower individuals to assert ownership over their digital lives and take advantage of the value they create online.
When the Bitmark team and I looked across the vast amount of personal data humans create on a daily basis, health data really stood out being valuable.
I reached out to Stefano M Bertozzi MD, Ph.D. (Dean and Professor of Health Policy & Management at UC Berkeley) and together we came up with the idea of asking the public to donate their personal data to advance public health.
What is the concept?
The concept was simple: Our phones and Fitbits track our steps, calories, sleep cycles, and more. This data is empowering and helps improve our wellbeing. This data can also aid research in myriad areas.
If you could safely and easily donate your data directly to those who are advancing the frontiers of public health, wouldn’t you want to do that?
One thing that was eye-opening is that we learned that researchers benefit from this digital donation process as much as the participants who are donating their data.
Both parties who are using Bitmark (the researchers and the participants) gain security, increased clarity, simplicity, and personal value.
How does the Bitmark system work?
In general, our tools allow users to simply apply a mark of accepted ownership to their data and embed it into the standardized, universal digital property system Bitmark has created.
For donating data, we have created a Facebook Messenger chat program, known as the “Bitmark bot.” Individuals can interact with the Bitmark bot to review eligibility requirements, learn how data is collected/stored, and ask further questions.
Individuals that meet the eligibility requirements can tap a button to participate in the study. The App requests permission from the participant to periodically extract specific personal health data and transfer an encrypted copy of that data to the study.
At any time during the course of a study, participants can opt out and their bitmarks will be returned.
With the continued focus on data sharing in clinical trials – what does Bitmark expect from the next five years?
I foresee individuals demanding more information about how their data is used, stored, shared, and protected.
Over time this transparency will strengthen all industries, healthcare definitely included.
Increasing trust through data transparency will protect individual rights in the digital world. And I believe it will lead to more, higher-quality data from individuals.
What are the next steps?
This summer will be spent working out the operational and technical details to run two studies with the Berkeley School of Public Health. These studies are set to begin in August when the school session resumes.