{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T22:10:44Z","timestamp":1775167844158,"version":"3.50.1"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2015,4,9]],"date-time":"2015-04-09T00:00:00Z","timestamp":1428537600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"published-print":{"date-parts":[[2015,12]]},"DOI":"10.1186\/s13023-015-0257-2","type":"journal-article","created":{"date-parts":[[2015,4,7]],"date-time":"2015-04-07T22:33:13Z","timestamp":1428445993000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":74,"title":["Innovation by patients with rare diseases and chronic needs"],"prefix":"10.1186","volume":"10","author":[{"given":"Pedro","family":"Oliveira","sequence":"first","affiliation":[]},{"given":"Leid","family":"Zejnilovic","sequence":"additional","affiliation":[]},{"given":"Helena","family":"Canh\u00e3o","sequence":"additional","affiliation":[]},{"given":"Eric","family":"von Hippel","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2015,4,9]]},"reference":[{"key":"257_CR1","unstructured":"Rodwell C, Aym\u00e9 S, eds, \u201c2014 Report on the State of the Art of Rare Disease Activities in Europe\u201d, July 2014, European Union. ( http:\/\/www.eucerd.eu\/upload\/file\/Reports\/2014ReportStateofArtRDActivities.pdf )."},{"key":"257_CR2","doi-asserted-by":"crossref","first-page":"341","DOI":"10.1038\/nrd3445","volume":"10","author":"K Westermark","year":"2011","unstructured":"Westermark K, Holm BB, S\u00f6derholm M, Llinares-Garcia J, Rivi\u00e8re F, Aarum S, et al. European regulation on orphan medicinal products: 10\u00a0years of experience and future perspectives. Nat Rev Drug Discov. 2011;10:341\u20139.","journal-title":"Nat Rev Drug Discov"},{"issue":"1","key":"257_CR3","first-page":"3","volume":"1","author":"P Song","year":"2012","unstructured":"Song P, Gao J, Inagaki Y, Kokudo N, Tang W. Rare diseases, orphan drugs, and their regulation in Asia: current status and future perspectives. Intractable Rare Dis Res. 2012;1(1):3\u20139.","journal-title":"Intractable Rare Dis Res"},{"key":"257_CR4","doi-asserted-by":"crossref","first-page":"20","DOI":"10.1016\/j.ymgme.2008.10.003","volume":"96","author":"RC Griggs","year":"2009","unstructured":"Griggs RC, Batshaw M, Dunkle M, Gopal-Srivastava R, Kaye E, Krischer J, et al. Clinical research for rare disease: opportunities, challenges, and solutions. Mol Genet Metab. 2009;96:20\u20136.","journal-title":"Mol Genet Metab"},{"issue":"August","key":"257_CR5","doi-asserted-by":"crossref","first-page":"1049","DOI":"10.1162\/0033553041502144","volume":"119","author":"D Acemoglu","year":"2004","unstructured":"Acemoglu D, Linn J. Market size in innovation: theory and evidence from the pharmaceutical industry. Q J Econ. 2004;119(August):1049\u201390.","journal-title":"Q J Econ"},{"key":"257_CR6","doi-asserted-by":"crossref","first-page":"1669","DOI":"10.1287\/mnsc.1110.1508","volume":"58","author":"E Hippel von","year":"2012","unstructured":"von Hippel E, de Jong JPJ, Flowers S. Comparing business and household sector innovation in consumer products: findings from a representative study in the United Kingdom. Manage Sci. 2012;58:1669\u201381.","journal-title":"Manage Sci"},{"key":"257_CR7","doi-asserted-by":"crossref","unstructured":"De Jong JPJ, von Hippel E, Gault F, Kuusisto J, Raasch C. The diffusion of consumer-developed innovations: patterns in Finland. SSRN Electron J. 2014:1\u201330. http:\/\/papers.ssrn.com\/sol3\/papers.cfm?abstract_id=2426498 .","DOI":"10.2139\/ssrn.2426498"},{"key":"257_CR8","volume-title":"Visualizing invisible innovation continent: evidence from global consumer innovation surveys","author":"S Ogawa","year":"2011","unstructured":"Ogawa S, Pongtanalert K. Visualizing invisible innovation continent: evidence from global consumer innovation surveys. 2011. Available at SSRN 1876186."},{"key":"257_CR9","doi-asserted-by":"crossref","first-page":"806","DOI":"10.1016\/j.respol.2011.03.009","volume":"40","author":"P Oliveira","year":"2011","unstructured":"Oliveira P, von Hippel E. Users as service innovators: the case of banking services. Res Policy. 2011;40:806\u201318.","journal-title":"Res Policy"},{"issue":"9","key":"257_CR10","doi-asserted-by":"crossref","first-page":"1594","DOI":"10.1016\/j.respol.2014.05.003","volume":"43","author":"P Boor van der","year":"2014","unstructured":"van der Boor P, Oliveira P, Veloso F. Unusual suspects? Innovation by users in developing countries: evidence from mobile banking services. Res Policy. 2014;43(9):1594\u2013607.","journal-title":"Res Policy"},{"key":"257_CR11","first-page":"1","volume":"1","author":"E Dyson","year":"2009","unstructured":"Dyson E. Why participatory medicine? J Particip Med. 2009;1:1\u20135.","journal-title":"J Particip Med"},{"key":"257_CR12","unstructured":"Ferguson T. E-patient: how they can help us heal healthcare. 2007"},{"issue":"4 Pt 1","key":"257_CR13","doi-asserted-by":"crossref","first-page":"1005","DOI":"10.1111\/j.1475-6773.2004.00269.x","volume":"39","author":"J Hibbard","year":"2004","unstructured":"Hibbard J, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4 Pt 1):1005\u201326.","journal-title":"Health Serv Res"},{"key":"257_CR14","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1136\/bmjqs-2012-001744","volume":"22","author":"R Rozenblum","year":"2013","unstructured":"Rozenblum R, Bates DW. Patient-centred healthcare, social media and the internet: the perfect storm? BMJ Qual Saf. 2013;22:183\u20136.","journal-title":"BMJ Qual Saf"},{"key":"257_CR15","first-page":"6","volume":"1","author":"G Frydman","year":"2009","unstructured":"Frydman G. Patient-driven research: rich opportunities and real risks. J Particip Med. 2009;1:6\u201310.","journal-title":"J Particip Med"},{"key":"257_CR16","doi-asserted-by":"crossref","first-page":"277","DOI":"10.5771\/0042-059X-2012-3-277","volume":"66","author":"H Habicht","year":"2012","unstructured":"Habicht H, Oliveira P, Shcherbatiuk V. User innovators: when patients set out to help themselves and end up helping many. Die Unternehmung. 2012;66:277\u201394.","journal-title":"Die Unternehmung"},{"key":"257_CR17","volume-title":"Revolutionizing innovation","author":"P Oliveira","year":"2015","unstructured":"Oliveira P, Canh\u00e3o H. Users as service innovators: evidence from banking to healthcare. In: Lakhani K, Harhoff D, editors. Revolutionizing innovation. Cambridge, MA: MIT Press; 2015."},{"key":"257_CR18","volume-title":"European Conference on Information Systems (ECIS) 2013 Proceedings","author":"C Kuenne","year":"2013","unstructured":"Kuenne C, Akenroye T, Moeslein K. Online innovation intermediaries in healthcare. In: European Conference on Information Systems (ECIS) 2013 Proceedings. 2013."},{"key":"257_CR19","volume-title":"Assistive products for persons with disability \u2014 classification and terminology","author":"ISO","year":"2011","unstructured":"ISO. Assistive products for persons with disability \u2014 classification and terminology. Geneve: ISO; 2011."},{"key":"257_CR20","doi-asserted-by":"crossref","first-page":"951","DOI":"10.1016\/j.respol.2005.05.005","volume":"34","author":"C L\u00fcthje","year":"2005","unstructured":"L\u00fcthje C, Herstatt C, von Hippel E. User-innovators and \u201clocal\u201d information: the case of mountain biking. Res Policy. 2005;34:951\u201365.","journal-title":"Res Policy"},{"key":"257_CR21","volume-title":"Peer-to-peer healthcare","author":"S Fox","year":"2011","unstructured":"Fox S. Peer-to-peer healthcare. Washington D.C.: Pew Research Center; 2011."},{"key":"257_CR22","unstructured":"White W, Calhoun C, Holovach J, Marie J, Buchanan L, Sames L et al. Uncommon Challenges\u037e Shared Journeys. Siren Press; 2011."},{"key":"257_CR23","doi-asserted-by":"crossref","unstructured":"von Hippel E, DeMonaco HJ, de Jong JPJ. Market failure in the diffusion of user innovations: the case of \u201cOff-Label\u201d innovations by medical clinicians. SSRN Electron J 2014:1\u201333.","DOI":"10.2139\/ssrn.2275562"},{"key":"257_CR24","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1136\/heartjnl-2011-301017","volume":"98","author":"T Treasure","year":"2012","unstructured":"Treasure T, Pepper J, Golesworthy T, Mohiaddin R, Anderson RH. External aortic root support: NICE guidance. Heart. 2012;98:65\u20138.","journal-title":"Heart"},{"key":"257_CR25","doi-asserted-by":"crossref","first-page":"2","DOI":"10.3390\/diseases3010002","volume":"3","author":"T Treasure","year":"2015","unstructured":"Treasure T, Pepper J. Personalised External Aortic Root Support (PEARS) compared with alternatives for people with life-threatening genetically determined aneurysms of the aortic root. Diseases. 2015;3:2\u201314.","journal-title":"Diseases"},{"key":"257_CR26","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1287\/mnsc.1090.1077","volume":"56","author":"N Franke","year":"2010","unstructured":"Franke N, Schreier M, Kaiser U. The \u201cI Designed It Myself\u201d effect in mass customization. Manage Sci. 2010;56:125\u201340.","journal-title":"Manage Sci"}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-015-0257-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s13023-015-0257-2\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-015-0257-2","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,8,22]],"date-time":"2019-08-22T22:44:16Z","timestamp":1566513856000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.ojrd.com\/content\/10\/1\/41"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,4,9]]},"references-count":26,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2015,12]]}},"alternative-id":["257"],"URL":"https:\/\/doi.org\/10.1186\/s13023-015-0257-2","relation":{},"ISSN":["1750-1172"],"issn-type":[{"value":"1750-1172","type":"electronic"}],"subject":[],"published":{"date-parts":[[2015,4,9]]},"article-number":"41"}}