“I Thought: Everybody Wants to Participate, Right?” — Exploring Patient Motivation for Taking Part in Long-Term Qualitative Research

Research on the development and implementation of technology in healthcare increasingly relies on the participation of various stakeholders. However, research participation can be burdensome, especially for patients with diseases that impact their daily functioning. This exploratory research investigates the motivation of patients for taking part in longer term or more demanding qualitative studies about evaluating health technologies. The participating patients were diagnosed with Chronic Obstructive Pulmonary Disease (COPD), stroke, spinal cord injury or chronic pain and participated in one of two different projects. During these studies, participants were asked in semi-structured interviews and focus groups about their motivation for and experience with these studies. Most participants were motivated by altruistic reasons, like wanting to please their therapist or to help the researchers involved in the study. In some cases, expected personal health benefits or improvements in future healthcare also played a role.