Implementation of electronic informed consent for cancer research - Benefits and experiences

Abstract

Cancer research in general is largely dependent of access to biobank samples, and access to large scale biobank collections is of crucial importance for the development and implementation of precision cancer medicine. The informed consent is the fundament of all research activities, including the collection of biological samples for cancer research. It is therefore of crucial importance that there is a system in place so that each patient that is diagnosed with cancer is given the opportunity to participate in cancer research, and that the informed consent is retrieved in a systematic and trustworthy manner. Cancer patients represent a large and heterogeneous group, differing in sex, age and physical condition, and cancer research is equally dependent on all of them to participate. Although we are using electronic solutions in many aspects of our daily life like log on to services and communicating with our surroundings, using such systems to involve people in medical research is still a rather unexplored field. This thesis will explore and map benefits achievable with an electronic informed consent solution for cancer research, and what efforts are needed in order to accomplish the benefits. The thesis question is: Which impact implementation of electronic informed consent has, and what efforts are needed in order to achieve a beneficial effect? To understand the total impact, I have done a literature review with focus on stakeholders perspective, design and implementation efforts and experience. I have also conducted a survey on the use of electronic informed consent solutions in cancer biobanks internationally and a survey amongst the hospital staff at Oslo University Hospital involved in the electronic informed consent process. In addition the process of designing and implementing an electronic informed consent solution for cancer research at Oslo University Hospital is described in detail. It has been found several issues related to the design and implementation of an electronic informed consent solution. These issues run in the ethical, technical and security related dimension. In addition issues related to the technical affiliation and preferences of the participants and the involved staff is described. Comprehensive work with design, implementation and hospital logistics are demanded for a successful implementation, and thereby the realization of the achievable benefits of an electronic informed consent solution.

Date of Award	2020
Original language	English
Awarding Institution	Medical University Graz
Supervisor	Karine Sargsyan (Supervisor)