Data Intermediary for Women’s Health Data
Women’s health data is often fragmented, difficult to access, and historically underrepresented in research.
Many medical studies, datasets, and digital health systems have been built on data that does not fully reflect women’s bodies, experiences, or health needs. This gap affects how diseases are studied, how treatments are developed, and increasingly how data-driven systems - including AI - are trained and evaluated. When women’s health data is missing or incomplete, the resulting knowledge is incomplete as well.
Data intermediaries
One proposed solution is the creation of data intermediaries: platforms that enable individuals to share their data with researchers, healthcare providers, or other organisations under agreed conditions. In principle, these systems could make valuable health data available for research while allowing individuals to retain control over how their data is used.
In practice, however, many data intermediary initiatives struggle to scale. A common reason is that the technical design of these platforms does not sufficiently reflect the needs, incentives, and concerns of the people involved.
Successful intermediaries need to balance two goals at once. They must enable meaningful value creation for data users, recipients, and providers, while preserving autonomy, trust, and control for the individuals who generate the data.
This research explores how socio-technical design requirements can help align these systems with stakeholder interests.
Women’s health data trust
The study focuses on a proposed women’s health data intermediary that would allow users of health-tracking apps to share their data with researchers. Because the platform is still in an early design stage, it provides an opportunity to collaboratively define both the technical system and the governance structures that will shape how it operates.
The project brings together several groups inspired by terminology in the EU Data Act. These include individuals who generate health data through apps, app providers who hold the data, and potential data recipients such as hospitals, academic research institutions, and commercial organisations. Software developers responsible for building the system are also part of the process.
Through interviews, document analysis, focus groups, and co-design workshops, the research examines which system features, governance mechanisms, and organisational structures have already been defined and which remain unresolved. Participants also evaluate proposed features by discussing both the benefits they might gain from the platform and the barriers that might prevent participation.
A key focus is identifying areas of consensus as well as points of friction between stakeholders. For example, healthcare organisations may strongly value access to large datasets, while individuals may differ widely in their willingness to share sensitive health data.
The study therefore explores governance mechanisms that could help address these tensions, including decision-making structures, oversight models, and rules governing data access, reuse, and deletion.
The outcome is a set of actionable socio-technical design requirements. While grounded in the domain of women’s health data, the insights aim to inform the development of data intermediaries more broadly: systems that are technically feasible while remaining aligned with the interests and values of the people whose data makes them possible.
Related work
Hudig, A.I. & Singh, J. (2025). Intimate Data Sharing: Enhancing Transparency and Control in Fertility Tracking, CHI Conference on Human Factors in Computing Systems (CHI ’25), Yokohama, Japan, https://doi.org/10.1145/3706598.3714089.