Innovation by patients with rare diseases and chronic needs

Abstract

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.MethodsWe 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. Logistic regression models were used to test the relationships between our key variables, patient innovation and solution sharing.Results263 (53%) of our survey respondents reported developing and using a solution to improve management of their diseases. An initial screening removed 81 (16%) solutions for being an obvious misfit to the self-developed innovation aim of the study. This lowered the sample of potentially innovative solutions to 182 (36%). Assessment of novelty and usefulness of the solutions, conducted by two medical evaluators, confirmed that 40 solutions (8%) were indeed novel, while the remaining 142 (28%) were already known to medicine. The likelihood of patient innovation increased as the education level increased (OR 2, p < 0.05), and as their perception of limitations imposed by their disease increased (OR 1.3, p < 0.05). 55 individuals diffused their solutions to some degree, with 50 of these sharing via direct diffusion to other patients. There is a positive relationship between the impact of a solution on the respondents’ overall quality of life and likelihood of solution sharing.ConclusionsGiven 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-015-0257-2) contains supplementary material, which is available to authorized users.

A Next Generation Assets-Based Public Health Intervention Development Model: The Public as Innovators

“…Thus, a study of a sample of medical patients in Portugal shows a much higher fraction innovating to serve their own needs (53% vs. the typical range of 2–8%) (14). The 500 patients surveyed are coping with chronic diseases ranging from rare genetic disorders such as Angelman's Syndrome to more common but very serious chronic diseases like Type 1 diabetes.…”

“…The Oliveira et al (14) Portuguese patient innovation study does not assess diffusion effort as a function of perceived general value of an innovation. However, it does report that a significant proportion of the 263 patients and caregivers who reported solutions, also reported investing efforts to share their solutions with others (32%, n = 84).…”

“…Similarly, fear of social stigma may have deterred many Portuguese medical patients from sharing their innovations with their doctors. Patients said this omission is due in part to their doctors' perceived lack of time and interest to hear about their innovations compounded by fear of being judged by a clinical authority figure or labeled “noncompliant” (14). …”

E-patients hold key to the future of healthcare

“…One study indicated that 8% of the solutions developed by patients with rare diseases and their caregivers were novel to medicine 6. There are plenty of e-patients all over the world.…”

The role of patients and carers in diffusing a health‐care innovation: A case study of “My Medication Passport”

“…Oliveira et al suggest that when patients develop innovations, these are mostly used to help themselves, or those they care directly for, but are rarely shared more widely. They surveyed 500 patients who had rare diseases to measure how many had developed innovations to help themselves and/or support their own care.…”