Consent giving for data exchange in Healthcare: What are the client’s needs?

Electronic data exchange is important to provide good healthcare. This project investigated the client’s needs when giving consent for data exchange for Birth Care. The consortium put the client central in the development of such a system, as its success largely depends on whether the client is willing to use it. The aim of this project was to build up knowledge about factors that are important for clients when giving consent. In this project, a network of health organisations in the region Noord-Holland collaborated with the research institute TNO.

To find out the client’s needs, the consortium conducted (online) interviews, workshops and questionnaires, both with clients and care givers for in the domain of Birth Care. The findings have been integrated in the form of a website, which has been evaluated in two iterative evaluation and design cycles.

Main findings are: 

• Participants find the website useful: it enhances their awareness of the process of giving consent. The website also increases the sense of self-management. Furthermore, the research demonstrated a large range in preference concerning the moment of giving consent (in advance vs. "when relevant") and the specificity of the consent given. A fully functional website should therefore provide all possibilities.  

• Healthcare providers are willing to inform patients about the consent facility, but this should not take too much extra time. Healthcare providers would like to have their own digital environment that offers the possibility to view the relevant patient data. This must be current data that match the most recently issued consent preferences. 

The result of the project is a clickable mockup of a privacy dashboard for Birth Care. Also, design guidelines have been developed that can be used as a basis for further development of data exchange systems in the Health care domain in general.

Read more about the results in the report of TNO.