LK 101Patient innovation
LK 101Patient innovation
We provide the first empirical exploration of disease-related innovation by patients and their caregivers. Our aims were to explore to what degree do patients develop innovative solutions; how many of these are unique developments; and do these solutions have positive perceived impact on the patients’ overall quality of life? In addition, we explored the factors associated with patient innovation development, and sharing of the solutions that the patients developed.
We first administered a questionnaire via telephone interviewing to a sample of 500 rare disease patients and caregivers. The solutions reported were pre-screened by the authors for their fit with the self-developed innovation aim of the study. All the reported solutions were then validated for their novelty by two medical professionals who confirmed that 8% of the solutions were indeed novel. The likelihood of patient innovation increased as the education level increased and as their perception of limitations imposed by their disease increased. There is a positive relationship between the impact of a solution on the respondents’ overall quality of life and likelihood of solution sharing.
Given that hundreds of millions of people worldwide are afflicted by rare diseases, patient and their caregivers can be a tremendous source of innovation for many who are similarly afflicted. Our findings suggest that many patients could be greatly assisted by improved diffusion of known solutions and best practices to and among patients and their caregivers.
Our results have some clear managerial implications that can result into better quality of life and health outcomes. One way to intervene and reduce the search cost is to develop a centralized inventory of patient developed solution, and online platform have been a good model for this. With this in mind, we developed Patient Innovation, www.patient-innovation.com, a non-profit international, multilingual and open platform, designed to allow patients and caregivers to show and share the innovative solutions they developed to fight their diseases, as well as to foster collaboration among patients, caregivers and others. Prestigious institutions and reputable individuals, including several Nobel Laureates, distinguished scholars and patient associations from around the world have endorsed it. In the first 20 months of operation the Patient Innovation platform collected and curated over 500 innovative solutions who are now being shared to the benefit of thousands of other patients.
Pedro Oliveira is Professor and Senior Associate Dean for Faculty and Research and Associate at the Católica-Lisbon School of Business and Economics. He is also the Academic Director of the LisbonMBA, a joint-venture with MIT Sloan, Director of the doctoral program in Technology Change and Entrepreneurship jointly offered with Carnegie Mellon University; and Director of several executive education programs. He is the Founder and Project Leader of Patient Innovation and also co-founded PPL Crowdfunding Portugal. Previously he was also an International Faculty Fellow (IFF) at MIT Sloan School of Management. He has served as Project Leader of Creative Commons Portugal. Previously he was advisor to the Ministry of Science, Technology and Higher Education. His research interests focus on the role of users in the development of new products and services. More specifically he has investigated the role of patients in the development of new treatments, therapies and medical devices He received his Ph.D. from UNC Chapel Hill; his M.Sc. and his “licenciatura” from IST-Lisbon.