Revolutionising Healthcare by Empowering Patients to Innovate

Abstract

A growing stream of literature argues for a more active role for patients and caregivers in healthcare delivery, namely in: • managing their disease, and becoming more active and empowered patients 1-3 • participating in the decision-making process of their treatments 4,5 • demanding free access to medical research papers, and organising research 6 • demanding their illness data, and exchanging it with other patients 7 However, this literature does not consider the innovation capacity of patients and caregivers, and their ability to develop new products and services. To attain the goal of truly patient-centric healthcare, it is necessary to also support and integrate the innovation-related activities of patients and caregivers into the current system. In this article, we share a view of the paradigm shift in healthcare that is inspired by the work in the social sciences on users and user communities, and by the growing number of new initiatives that are propelling this shift in healthcare. THE PATIENT INNOVATION RESEARCH STREAM Many patients with chronic diseases and non-professional caregivers develop useful and innovative solutions to help them cope with their health disorders. 8-11 When we began studying this phenomenon, we first focussed on a set of rare and chronic diseases and looked at the solutions patients use to help them cope with their disease or health condition. We found that patients and caregivers have significant innovative capabilities and have developed various solutions, treatments, and medical aid devices for themselves (e.g. about 50% of the solutions for cystic fibrosis were developed by the patients). These solutions span from simple tools for everyday use, through to the discovery of previously unknown therapies and highly sophisticated solutions. 11 Encouraged by these results, we decided to explore the phenomenon further, focussing on individuals, rather than the solutions. We administered a survey to a sample of 500 rare disease patients and caregivers and found that 40 respondents, i.e. 8% of our sample of patients and caregivers, had developed innovative solutions for themselves that were evaluated as novel by medical experts. If this fraction of innovators holds for the overall population, patient and/or non-professional caregivers represent a tremendous source of healthcare innovations. 9