Peer Adoption and Development of Health Innovations by Patients: National Representative Study of 6204 Citizens.

BACKGROUND: There is growing evidence that many patients and caregivers innovate by developing new solutions to cope with their health disorders. Given the easy access to vast internet resources and peers globally, it is increasingly important to understand what may influence user innovation and its adoption in health for improving individual well-being and ensuring their safety, in particular, how interactions with peers and physicians or search behavior, along with sociodemographics, may influence the decision to develop a solution or adopt one developed by a peer. OBJECTIVE: The aim of this paper was to study the development and peer-to-peer adoption of user innovations in health care and identify individual-level factors associated with these processes. METHODS: Data were collected via computer-assisted phone survey from a large, random, and representative sample of adult residents in Portugal (N=6204). User innovation questions were added to 1 wave of an ongoing observational, longitudinal, population-based epidemiological study. By asking about individual innovation activity, the sample was split into 3 groups: (1) the developers of health-related solutions for own use (developers), (2) the adopters of solutions developed by other patients or caregivers (peer-to-peer adopters), and (3) the rest of the population. Within the last group, intention to adopt was measured and used as a proxy of future behavior. Regression analysis is used to test the associations. RESULTS: In the population considered in this paper, an estimated 1.3% (75/6008) reported having developed a solution for own use and 3.3% reported to have adopted a solution developed by peers. The 3 groups (developers, adopters, and remaining population) have distinctive characteristics. Gender plays an important role in the solution development, as women are less likely to develop one (odds ratio [OR] 0.4, 95% CI 0.20-0.81; P<.05). Education is positively associated with the development activity (OR 1.13, 95% CI 1.03-1.24; P<.05) but also with the intentions to adopt a peer-developed solution. Search for health-related information is positively associated with the development, adoption, and the intentions to adopt a solution. Interactions with peers over the internet are rare, but in-person interactions are frequent and have a positive association with the dependent variables in all 3 groups. The results also suggest that trust in doctors represents an important dimension that shapes the attitudes of the population toward peer-developed solutions. CONCLUSIONS: This paper demonstrates the importance of the peer community, doctor-patient relationship, citizen's search for information on innovation, and individual attitudes toward peer-to-peer adoption in health care. It stresses the need for a reliable Web-based health-related information and the necessity to deeper understand complex relationships between the need to improve health and fulfill the need and the perception of the health care system.

Innovation by patients with rare diseases and chronic needs.

UNLABELLED: 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.