Health Information Leaks Affected Millions in the Previous Year - Here's the Action Founders Need to Take Now
In the rapidly evolving world of health technology, a significant shift is underway, aimed at empowering individuals and promoting transparency in data management. This transition is driven by the growing recognition that our personal data, including steps taken, heartbeats, and various other health-related information, is a valuable commodity fueling the healthtech economy.
Recent years have seen an increasing demand for personal control over how Artificial Intelligence (AI) is used in our lives. According to a report by Pew in April 2025, 55% of U.S. citizens expressed this desire. This call for change is not just limited to the United States; globally, people are seeking more say in how their health data is handled.
The healthtech industry has traditionally operated on a skewed exchange, where people generate data and companies extract the value. However, a move towards treating users as stakeholders in their own health, rather than subjects, is proving beneficial. This approach is evident in the changes made by institutions like MedUni Vienna's rheumatology department, which has integrated digital health technologies like the COTIDIANA app to enhance transparency and patient self-determination through real-time patient-reported health data collection.
One of the most significant initiatives driving this change is the Swiss initiative, MIDATA. Built on the principle of treating health data ownership to individuals, rather than companies, MIDATA enables individuals to maintain their own health records and govern the platform as members. This approach is a stark contrast to traditional institutions, which often hold the reins of health data control.
Blockchain technologies can also play a role in this shift, offering a structure that delegates health data ownership to individuals. These technologies can serve as a learning ground for traditional institutions seeking to adapt to a more user-centric approach in healthcare.
The importance of alignment between users and companies is crucial in this new landscape. Richer health data leads to better algorithms, and better algorithms deliver products that justify the relationship. This alignment can be fostered by designing incentive mechanisms that put people at the center of the health process. Strategies such as granting early access to features, premium health analytics, and dashboards, or offering credits that unlock opportunities in research and care, can be effective in incentivizing user participation.
Transparency in health data flows can help turn privacy from a legal document into an experience for users. Replacing vague consent boxes with optional permissions that let a person authorize one use of their health data and decline another can promote transparency. Building products and policies where value flows inwards, not just outwards, can foster a sense of health data ownership and generate richer, more consistent streams of high-quality health data.
Unfortunately, the road to this user-centric health data management has not been without its bumps. In 2024 alone, at least 14 data breaches hit one million patient records, with the largest healthcare breach on record, the Change Healthcare attack, affecting approximately 193 million people. These incidents underscore the need for increased vigilance and transparency in health data handling.
Despite these challenges, the shift towards transparency and user-centric health data management can benefit both private companies and the public sector in healthcare. By placing users at the heart of the health process, we can build a healthtech industry that is not only more ethical but also more effective in delivering the health products and services we need.
In conclusion, the future of healthtech lies in a user-centric approach to health data management. By treating our health data as our own, we can foster a sense of health ownership, promote transparency, and ultimately, reap the rewards of a healthier, more informed society.
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