| Popis: |
This research emphasises that the burden of communication lies with data-collectors rather than the people who are asked to provide personal information. The research questions addressed in the thesis concern a service review of one study’s implementation of a dynamic form of consent over time, rather than presenting research participants with a one-off decision. This thesis argues, based on a critical review of previous work, that the value of engagement is underdeveloped and underexplored. Three studies are carried out in collaboration with an online study collecting survey data on rare diseases (RUDY). Findings suggest that developing engaging data-practices offers a return on investment. In other words, participant engagement enriches data collection in the study under test and there are further steps that could be taken. Study 1 consisted of interviews with participants, and a focus group with researchers. While researchers report user experience and engagement as design priorities, most participants could not recall any information about the project. Participants indicate that the type of feedback they want should be interesting, provide knowledge and allow further opportunities for active participation. Study 2 involved a series of focus groups with RUDY participants, exploring how an intervention study could enhance the feedback provided. This provided a specification for ‘enhanced feedback’: participants wanted to know project aims, what data was collected, how that data was used, the value of their contributions, and research outcomes. Participants wanted this information to be communicated in a way they could understand, free of technical jargon. The resulting specification was used to make changes to the project website, online portal and reminder emails. A pre-test/post-test intervention study [n=1,936] showed two benefits to making information about a research study more accessible and relevant to members of the public: increased retention and a reduced drop-off in participation over time. From 2019 to 2020, questionnaire completions increased by 5% and questionnaire drop-off fell from 32% to 8.9%. Those who collect, control, use and share personal data have responsibilities that they must, but do not often, demonstrate publicly. Public demonstration of responsibility is important it is known to build trust, as illustrated in the literature review. A tool-kit is provided to help researchers build engagement into their own data-practices, tools which also serve as design prompts to stimulate conversations around how to demonstrate trustworthiness in research projects. The thesis makes several contributions: theoretical, methodological, empirical and practical. This work demonstrates a need for researchers to describe how they will engage with participants over time about the importance of their data-contribution. Co-design is used to validate the research direction of this work, ensuring its relevance and impact. The importance of engagement is indicated, and justified empirically. This work demonstrates that engaging data-practices are just as valuable to those who collect data as they are to those providing it. |
