Paving the way : the second generation of e-patients, their experiences, actions and driving forces

Sammanfattning: Background: E-patients are described as patients and informal caregivers who are empowered, equipped, enabled and engaged, and use digital solutions for their self-care and in healthcare contexts. Self-care can be understood as health related activities and behaviors regarding life styles and environmental aspects. The self-determination theory can be used to understand aspects of motivation and to provide an understanding for the basic psychological needs of persons, and how their autonomy, competence and relatedness are supported. Understanding e-patients also includes understanding their use of different consumer health informatics applications. These are digital solutions where patients and informal caregivers as citizens are the end-users. In the beginning of this century, e-patients were described as persons using the Internet to find information about their condition or to prepare for clinical encounters, as well as engaging in online communities. They were called the first generation of e-patients. Today there is a broader use of and an increased access to better digital solutions. Therefore, the first generation of e-patients has evolved largely in tandem with the evolving environment. The overall aim for this thesis is to examine the experiences, actions and driving forces of the second generation of e-patients, and their applicability to a broader group of patients with chronic conditions and their informal caregivers. Methods: Three studies were performed. Study I consisted of a qualitative approach conducting semi-structured interviews with 15 e-patients. Deductive framework analysis was used, with the self-determination theory as an initial framework. Study II was a mixed method study with seven semi-structured interviews and a survey with 180 included respondents having Parkinson disease and self-tracking experience. Inductive conventional content analysis was applied for the interviews and statistical analysis for the survey. In study III the 15 semi-structured interviews from study 1 were analyzed using inductive thematic analysis resulting in 12 key concepts. These concepts were tested in six focus groups with 33 patients with chronic conditions and their informal caregivers. An abductive direct content analysis was used for the focus groups. Results: The second generation of e-patients generate their own data, are early adopters or innovators of new solutions for themselves as well as for other peers. They are characterize by relatedness towards others, autonomy concerning themselves, as well as increased competence. Learning aspects seem to generate from self-generated data, and self-tracking provides persons with Parkinson’s disease with tools to improve their decision making as well as more active communication with healthcare professionals. To track one’s health and medication can be time consuming, and it is consider important to find the right balance between tracking efforts and expected outcomes. When comparing activities and behaviors of e-patients to other active patients and informal caregivers, some variations seem to exist between the two groups. Therefore two different frameworks regarding role specific competencies emerged. Conclusion: This thesis shows different levels of being an e-patient. The e-patient movement is thriving towards generating own data, being early adopters of new solutions, and evolves as innovators, as in contrast to other active patients and informal caregivers. In tandem with the progressing digital environment the second generation of e-patients has the possibility to influence the future of participatory design within healthcare contexts as well as consumer health informatics applications. It is therefore important to follow and understand this development.