The dawn of the human-centric personal data market. Human-centricity and the legitimacy of data-driven business models in health data ecosystems

Health data can help researchers understand diseases, improve care and develop new services. But when several organizations use the same data, people may have questions. Who decides how their information is used? Who benefits? Who takes responsibility if something goes wrong? My dissertation examines how taking people’s interests and choices seriously can help make business models built around personal health data acceptable to those affected by them.

The study draws on 16 interviews with people working in organizations that handle or use health data. It identifies five ways these organizations can earn acceptance: giving people meaningful choices about their data, acting in ways that deserve trust, sharing benefits and risks fairly, making clear who is responsible for decisions, and working with other organizations to support those commitments.

Interviewees placed more emphasis on how data is governed and what benefits it could deliver than on involving people directly in decisions about its use. The interviews reflect the views of people working in these organizations. How patients and other people whose data is used experience these practices remains an open question.

The dissertation argues that public acceptance helps sustain the use of health data over time. When organizations develop a service that relies on personal health data, they can give people a say in how their information is used and show how their input shapes decisions. This matters because the people who make these services possible through their data should also have a voice in how the services are designed and run.