One company wants people to claim their personal data as property, and it’s starting the movement with healthcare data.
The startup, Hu-manity.co, said it wants to help both individuals control their data and businesses get access to higher-quality information shared with consent.
The company’s push is focused on the #My31 app, named for the concept that owning one’s personal data should be the 31st human right. The U.N. declared 30 universal human rights in 1948.
Hu-manity.co has launched its effort in the healthcare space, but wants to expand it to spending habits, GPS and driving data, personal information from platforms such as Facebook and Google, and other areas. The group has argued that the individual has been “cut out of the deal” in terms of data-sharing.
“When you talk to people about data, they immediately go to things like Facebook or Google, but that’s not the problem we’re trying to solve,” said Hu-manity.co cofounder Michael DePalma. “It’s the most obvious instantiation of the problem we’re seeing everywhere. Healthcare data is one type of information that is being stored, bought, and sold in the market that people are completely unaware of.”
As the healthcare and pharma industries lean more on real-world evidence (RWE), some would argue that patients withdrawing access to data would be bad for the industry. DePalma disagreed, saying pharma companies would be willing to pay for better data and would get access to higher-quality health information via the app.
Meanwhile, the FDA has emphasized RWE and real-world data to monitor the postmarket safety of drugs and make regulatory decisions, while drugmakers are using RWE in drug clinical trials and observational studies. Other parts of the healthcare industry are using RWE to support coverage decisions and create tools for clinical use.
“We’re not here to restrict the flow of data. We’re here to accelerate and improve the data economy by including a group that’s never been included: the people who create the data, the patient,” DePalma explained. “What we’re doing is enhancing the value for the individual by cutting the patient in. Pharma has told us they are willing to pay because it will offset other costs, like compliance costs and the cost of failing clinical trials from lack of data.”
Hu-manity.co users will receive a title for their data, similar to a car title, after they claim it. They can choose to share the data however they please, whether no sharing at all, only sharing for nonprofit cancer or rare disease research, or leasing to pharma companies for compensation.
Hu-manity.co also drills deeper into what type of healthcare data can be shared. Users can share their entire medical record or choose individual pieces like billing information, medications, test results, or treatment history. They can also choose to share personally identifiable data for extra compensation.
“Somewhere between 8% and 10% want to opt out completely, but the vast majority of people are actually data altruists,” DePalma said. “They want to help, but they want some level of control.”