Donate your Data!

Design and test of ideas for a public health data donation practice

Doctors/researchers would like to collect data from the widest possible group of (potential) patients to better tailor their treatments to their specific needs and situations. Inspired by the altruistic act of blood donation - in which individuals consciously donate blood in support of a common good (health care for all) - we investigated what a public health data donation practice might look like.

(Action) research

From focus group research we found that:

  1. patients would like to know what their data is needed/used for, and that they would like to receive feedback, and
  2. that they would like to have the opportunity to contribute data, such on their personal sense of well-being, that they consider relevant for the development of a more holistic assessment of their condition.

(Co-creative) design

Schetsen van een publieke datadonatiepraktijk

Facilitated by Afdeling Buitengewone Zaken (A/BZ) a team of researchers and designers developed 3 concepts of health data donation practices:

  1. A mobile health data collection service
  2. A data donation practice, supported by role models
  3. A data donation practice, based on empathy


Based on the outcomes of the design workshop, A/BZ developed a conversation piece to trigger members of the general public to think about how their ideal public health data donation practice would look like.

Sketch of the conversation piece Research at Afrikaandermarkt

With this conversation piece, we collected responses of people at Rotterdam's Afrikaandermarkt and the Erasmus Medical Centre. We found that many respondents:

  • would be very willing to donate data altruistically for public causes in a low-threshold way and to a trustworthy/reliable institute
  • would like to get an impression/feedback on what data are used for
  • would not consider themselves as the target audience, because consider themselves too healthy or too unhealthy, or because they suppose there to be a language or educational barrier
  • suggest that they could donate personal stories and experiences
  • only use digital means/smart phones on a very basic level