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. Methods: We 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.Results: 263 (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.Conclusions: 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.

Introducing the dilemma of societal alignment for inclusive and responsible research and innovation

“…In higher income countries, consumer innovation represents a significant portion of a nation's innovation activities (Bengtsson 2015;De Jong 2011;Kuusisto et al 2013;Ogawa and Pongtanalert 2011;von Hippel, de Jong, and Flowers 2012). Examples are wide-ranging, including children's products developed by parents (Shah and Tripsas 2007), software and sport-related goods (Jeppesen and Frederiksen 2006;Lüthje 2004), and therapies for chronic diseases (Oliveira et al 2015). But examples also exist from communities in poorer situations, where bottom-up innovations may contribute not only to the development of new technologies, but also to social empowerment, like the case of sanitary solutions in India (Kumar and Bhaduri 2014).…”

Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications

“…In a preceding study by Lüthje (2003) in the healthcare sector, 22% of the participating surgeons were innovating. Oliveira et al (2015) found that 36% of all patients with a chronic condition or their relatives innovated in relation to their needs. These findings are in line with a growing body of literature that indicates that patients are gaining increased medical expertise in relation to their disease (Budych et al 2012;Hartzler and Pratt 2011;Greenhalgh 2009;Thorne et al 2000).…”

“…Scholars have only recently identified the innovative potential of patients and relatives (Oliveira et al 2015;Habicht et al 2013;Bullinger et al 2012). Regarding the shift to chronic diseases, patients are acting increasingly proactively and are becoming experts in their health issues.…”

“…Habicht et al (2013) argue that patients have a strong incentive to innovate, since they generally expect to benefit from using selfdeveloped solutions. First findings indicate that patients mostly develop innovative behavioral patterns, treatments, and therapies, while only a small fraction of their innovations relates to medical devices (Oliveira et al 2015). Analyzing medical device innovations, software innovations dominate, followed by hardware innovations, service innovations, and media innovations (Bullinger et al 2012).…”

“…Prior research has shown that solution knowledge is mostly prevalent within companies, while need knowledge is often found among users (von Hippel 1994). Particularly in the healthcare sector, patients with long-lasting -often chronic -diseases have high usage experience in timeconsuming routines (Oliveira et al 2015;Holman and Lorig 2004;Davis et al 2000). During these enduring treatments, patients, patients' relatives, and healthcare professionals gain information about the disease and the treatment that are costly to acquire and to transfer (von Hippel 1998).…”