The Future of Personal Health Data: Who Owns It, Who Uses It, and Who Should
Every day, millions of Americans generate health data through apps, wearables, and connected devices. Blood pressure readings, sleep patterns, medication adherence, mood ratings, exercise logs, and symptom diaries accumulate in databases owned by technology companies. The question of who truly owns this data is increasingly important.
The Ownership Question
Most health app terms of service grant the user ownership of their data in principle, but the practical reality is more complicated. Many apps make data export difficult or impossible. Some sell anonymized or aggregated data to third parties. Others lose data when the company shuts down, which happens frequently in the health app market.
"If you cannot export your data, you do not really own it," said Ralph Pugh, founder of BodySitRep. "We built export as a core feature, not an afterthought, because your health data should be yours to take wherever you need it."
The Privacy Landscape
The privacy implications of health data have become more visible since the Dobbs decision in 2022, which raised concerns about period tracking data being subpoenaed. This catalyzed a broader conversation about health data privacy that extends beyond reproductive health.
The most privacy-protective health tracking apps use end-to-end encryption (AES-256-GCM is the current standard), store minimal data on servers, and never sell user information. BodySitRep encrypts all health data fields before storage and stores photos exclusively on the user device.
The Portability Challenge
Data portability remains the weakest link. Most health apps cannot import data from other health apps. Switching platforms means starting over. Until the industry adopts standardized health data formats, consumers remain locked into whatever platform they started with.
The SMART on FHIR standard offers a path forward for healthcare data interoperability, but consumer health apps have been slow to adopt it. The companies that solve portability first will likely capture significant market share from users frustrated with data lock-in.