OechsnerRaeFelt2025-HealthDataProvision

#noteType/litnote

#noteType/litnote

Susanne Oechsner, Robin Rae, and Ulrike Felt (2025) “Should I provide my health data for research? Citizens assessing the value of data provision”

Bibliographic info

Oechsner, S., Rae, R., & Felt, U. (2025). Should I provide my health data for research? Citizens assessing the value of data provision. Big Data & Society, 12(3), 1–12. https://doi.org/10.1177/20539517251361117

Commentary

I read the article as a clear argument that willingness to share health data is situational. People don’t decide once and for all. They weigh fairness in value return, how future uses will be governed, and whether someone explains the route their data will take. This matches the evidence the authors present and it makes sense for the European Health Data Space, where broad public support depends on trust that can be earned and lost over time.

The study design helps show how these judgments form. In Smart4Health workshops and later interviews, participants preferred steering the pathway of data rather than selecting fields one by one. They wanted straight talk about where data would travel, what traces might remain, and what withdrawal can realistically undo. They were not against companies by default. They expected symmetry: if data help create value, the public should see returns. Several even spoke of data as a kind of currency, which explains the call for clear terms and visible benefits.

The most interesting move is the focus on proxies. If a Data Access Committee decides who gets access and for what purpose, the committee becomes the core site of legitimacy. People then judge who sits on it, what criteria it applies, and how strictly those criteria are enforced. That shifts transparency from static disclosure to something relational: show the journey, the actors, and the guardrails. It also points to two practical questions that matter for policy and design. What minimal and understandable pathway commitments would satisfy citizens without creating consent fatigue? And how should benefit symmetry be demonstrated in practice, for example through open science duties, price commitments, or public return clauses in access agreements?

The paper is strongest where method and concept meet practice. It links everyday reasoning to concrete levers that designers and regulators can actually change. The limits are real. The sample is modest and the prototype used broad consent, which may shape what people notice. Even so, the analysis gives a useful roadmap: focus governance on pathway clarity, credible proxies, and visible returns, then treat consent as an ongoing relationship rather than a form to file.

Excerpts & Key Quotes

Willingness is not a yes/no switch

“citizens’ valuations of a digital health infrastructure are by no means binary”

Comment:

This anchors the paper’s claim. It explains why consent should be treated as a continuing relationship, not a one-time event.

Transparency as a real requirement

“we underscore ‘relational transparency’ as a fundamental precondition”

Comment:

Transparency means making routes, actors, and value visible. Without that, legitimacy is hard to sustain.

Data seen as currency

“Data are the currency at the moment.”

Comment:

When people frame data like money, they expect clear terms and fair returns. General claims about the public good aren’t enough on their own.

Choice handed to a committee

“Instead, the choice on context and purpose was outsourced to a Data Access Committee (DAC).”

Comment:

Delegation shifts attention to the proxy. Trust then depends on who is on the committee, the criteria they use, and how consistently they apply them.

Procedures depend on people

“the promised procedures are only as good and reliable as the people responsible for them”

Comment:

Rules don’t carry trust by themselves. Citizens look for credible stewards and clear responsibility, which is where pathway commitments and public return clauses can help.