Patients and caregivers as sources of innovative ideas and solutions

: a multiple-case study approach

Abstract

Recent academic literature shows that patients and caregivers are a significant source of innovative solutions related to their medical condition. To date, little is known about the process by which these innovations emerge, how they diffuse, and how they impact the lives of patients and caregivers. In this work we follow a multiple-­‐case study approach to map a set of patient innovations and adoptions of patient innovation cases, and systematically explore how and how far patient and caregivers innovate in the health care field. In addition, we propose some explanations for why patients and caregivers stop at a certain stage of progression of the innovation process. We conducted 15 extensive semi-­‐structured interviews with patients and caregivers of the following group of diseases: spinal cord injuries, Angelman syndrome, epidermolysis bullosa, and hemiparesis. These individuals shared with us their experiences with their disease and their efforts, or the lack of them, to overcome specific problems related to their health condition. This includes 4 “holistic” case studies and 26 “embedded” case studies. With the information from these cases, we analyze patient innovation paths and present them in the fall-­‐offs conceptual framework. Through a cross-­‐case analysis, we find that duration of the experience with the disease, complexity and pressure of a certain situation, belonging to a group or a community, and perceived value of a solution are among the most important reasons that impact how far patients and caregivers take their innovations’ process. As a result of our multiple-­‐case analysis we present a set of propositions from which future research in the field could be based. This research was conducted in the context of the Patient Innovation Research Project, which includes a non-­‐profit international and multilingual platform, designed to allow patients and caregivers to share the solutions they developed to fight their diseases. The main take ways presented here, and its implications, will be further developed to be presented to the Advisory Board of Patient Innovation, which include six renowned scholars and scientists, including two Nobel Laureates.

Date of Award	2014
Original language	English
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Susana Frazão Pinheiro (Supervisor)