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Innovation by patients with rare diseases and chronic needs

2015-04-09Journal article Open access
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dc.contributor.authorOliveira, Pedro
dc.contributor.authorZejnilovic, Leid
dc.contributor.authorCanhão, Helena
dc.contributor.authorHippel, Eric Von
dc.date.accessioned2021-09-14T15:29:21Z
dc.date.available2021-09-14T15:29:21Z
dc.date.issued2015-04-09
dc.description.abstractWe 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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.doi10.1186/s13023-015-0257-2pt_PT
dc.identifier.eid84928009492
dc.identifier.issn1750-1172
dc.identifier.pmid25887544
dc.identifier.urihttp://hdl.handle.net/10400.14/34838
dc.identifier.wos000353107500001
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.relationThe Role of ‘User Innovators' in the Development of Telecom Products and Services
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectDiffusion of innovationpt_PT
dc.subjectPatient innovationpt_PT
dc.subjectRare diseasespt_PT
dc.subjectUser innovation in healthpt_PT
dc.titleInnovation by patients with rare diseases and chronic needspt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleThe Role of ‘User Innovators' in the Development of Telecom Products and Services
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/3599-PPCDT/CMU-PT%2FOUT%2F0014%2F2009/PT
oaire.citation.issue1pt_PT
oaire.citation.titleOrphanet Journal of Rare Diseasespt_PT
oaire.citation.volume10pt_PT
oaire.fundingStream3599-PPCDT
person.familyNameOliveira
person.familyNameZejnilovic
person.familyNameCanhão
person.givenNamePedro
person.givenNameLeid
person.givenNameHelena
person.identifierB-2619-2016
person.identifier379800
person.identifier.ciencia-id721A-B048-4EDB
person.identifier.ciencia-idEE18-A588-D905
person.identifier.ciencia-id5A17-C6D9-DBC8
person.identifier.orcid0000-0002-3898-2623
person.identifier.orcid0000-0002-4209-4637
person.identifier.orcid0000-0003-1894-4870
person.identifier.ridB-2619-2016
person.identifier.ridE-1125-2012
person.identifier.ridC-9611-2018
person.identifier.scopus-author-id7102098014
person.identifier.scopus-author-id56598092000
person.identifier.scopus-author-id6602393492
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
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relation.isAuthorOfPublication8ff25838-8d66-494c-b8c1-4fb76c196d4b
relation.isAuthorOfPublication2d024ba9-16cc-4697-a629-195862e3e030
relation.isAuthorOfPublication.latestForDiscovery78111f30-5b58-4602-aa0e-b83519223cc3
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