Focus on collection and sharing of health information has for a long time been a focus point in Denmark. More health care providers have, through the revision of the Sundhedsloven in 2011, gained access to entries in public Health information. Citizens must take the initiative themselves to refuse consent to entry and sharing of personal health data. The possibility for citizens to specify negative consent and limit possible view of the personal health data varies, and obtaining consent is often done on paper just before treatment starts up. Citizens legal position in relation to self-determination of who should have access to their health information, are not observed in health care today. The confidentiality there always should be about public health information appears under pressure. How can we relive and restore the confidentiality, trust and credibility which should always be between citizens and health care?
We want to investigate whether it is possible to design a consent register with a focus on citizen. We want to make an assessment of whether a consent registry will give citizens and health care providers a better management of the lawful consent to the entry and sharing of health information, than we have seen it today.
We will examine the basis of clarifying the consent handling in three different systems. We have chosen to access the problem with mainly qualitative methods, like interviews, questionnaires, analysis of documents and product catalogs. Based on Müller's technology understanding we will look at the procedures and processes that are about the handling of citizens' consent. The individual in particular, is our focus in this study, and we will be using Grounded Theory to form our own theory and framework of an understanding about the citizen's opportunities and needs in order to submit a negative consent.
Based on the analysis, we will discuss our findings from the four areas of Müller's technology understanding, and the discussion will be based on three levels: individual, organizational and societal level. With the use of Activity Theory, we will elucidate the subjective actions in workflows by delivering negative consent.
Discussion and findings from the analysis will form the basis for the design of a consent register, presented along with a final assessment of whether a register where citizens can register their own consents will give citizens and health care providers a more sensible handling of the rightful consents in connection to entry and sharing of personal health data.