Data pertaining to every aspect of our lives is continuously amassed by private industry as we interact with various technologies each day. Health-related data associated with real-time behaviours is gathered through technologies like mobile apps, search engines, and electronic loyalty cards globally. Health researchers with access to these large pools of data could conduct large-scale research (Nevalainen, Erkkola, Saarijarvi, Nappila & Fogelholm, 2018) to determine physical activity levels, sleep patterns, nutritional information, alcohol consumption and other determinants of health (Molster et al., 2018), which in turn could be used to develop preventions, treatments and cures for illnesses (Hummel, Braun, and Dabrock, 2019).
Future health researchers’ access to such data is reliant on the presence of appropriate frameworks for the sharing of personal data to clinical health researchers (Skatova & Goulding, 2019), which in turn is reliant on the willingness of individuals to donate their personal data for the purposes of clinical research. Therefore understanding the various motivations underlying such data donations is important for the development of such frameworks.
This study aimed to build on the findings of previous research (Skatova and Goulding, 2019), which found 3 overarching motivations which could be attributed to a hypothetical willingness to donate data, by conducting a preliminary investigation into whether previously identified data-donation motivations can be attributed to the responses provided to various real, as opposed to hypothetical, data donation requests.
415 participants took part in the study. This study measured these 3 motivations through a series of online surveys, including a motivations for data donations questionnaires (Skatova & Goulding, 2019) with various conditions applied to each survey.
The results of this study provide preliminary support for the presence of the 3 previously identified motivations for a willingness to donate personal data to clinical health research, social-duty, purpose/understanding, and self-benefit in decisions to donate personal data regardless of the perceived reality of the request or the type of clinical organisation making the request.