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This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>This multidisciplinary project draws on an explanatory sequential mixed-methods study. A hospital-based survey with patients, informal carers, health professionals and technical staff recruited at two reference centres for rare diseases in Portugal will be conducted first. The qualitative study will follow consisting of semi-structured interviews and scenario-based workshops with a subsample of the participant groups recruited at baseline. Quantitative data will be analysed using descriptive and inferential statistics. Inductive and deductive approaches will be combined to analyse the qualitative interviews. Data from scenario-based workshops will be iteratively compared using the constant comparison method to identify cross-cutting themes and categories.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>The Ethics Committee for Health from the University Hospital Centre S\u00e3o Jo\u00e3o\/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99\/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2020-044289","type":"journal-article","created":{"date-parts":[[2021,3,15]],"date-time":"2021-03-15T11:42:48Z","timestamp":1615808568000},"page":"e044289","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":23,"title":["Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research"],"prefix":"10.1136","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1828-8642","authenticated-orcid":false,"given":"Cl\u00e1udia","family":"de Freitas","sequence":"first","affiliation":[{"name":"EPIUnit \u2013 Instituto de Sa\u00fade P\u00fablica, Universidade do Porto, Porto, Portugal"},{"name":"Centre for Research and Studies in Sociology, University Institute of Lisbon (ISCTE-IUL), Lisboa, Portugal"}]},{"given":"Mariana","family":"Amorim","sequence":"additional","affiliation":[{"name":"EPIUnit \u2013 Instituto de Sa\u00fade P\u00fablica, Universidade do Porto, Porto, Portugal"}]},{"given":"Helena","family":"Machado","sequence":"additional","affiliation":[{"name":"Communication and Society Research Centre (CECS), Institute of Social Sciences, University of Minho, Braga, Portugal"}]},{"given":"Elisa","family":"Le\u00e3o Teles","sequence":"additional","affiliation":[{"name":"Centro de Refer\u00eancia de Doen\u00e7as Heredit\u00e1rias do Metabolismo do Centro Hospitalar Universit\u00e1rio S\u00e3o Jo\u00e3o, Porto, Portugal"}]},{"given":"Maria Jo\u00e3o","family":"Baptista","sequence":"additional","affiliation":[{"name":"Centro de Refer\u00eancia de Cardiopatias Cong\u00e9nitas do Centro Hospitalar Universit\u00e1rio S\u00e3o Jo\u00e3o, Porto, Portugal"},{"name":"Departamento de Ginecologia, Obstetr\u00edcia e Pediatria, Faculdade de Medicina, Universidade do Porto, Porto, Portugal"}]},{"given":"Alicia","family":"Renedo","sequence":"additional","affiliation":[{"name":"Public Health Environments and Society, London School of Hygiene and Tropical Medicine, London, UK"}]},{"given":"Veerle","family":"Provoost","sequence":"additional","affiliation":[{"name":"Bioethics Institute Ghent, Department of Philosophy and Moral Sciences Ghent University, Ghent, Belgium"}]},{"given":"Susana","family":"Silva","sequence":"additional","affiliation":[{"name":"EPIUnit \u2013 Instituto de Sa\u00fade P\u00fablica, Universidade do Porto, Porto, Portugal"},{"name":"Departamento de Ci\u00eancias da Sa\u00fade P\u00fablica e Forenses e Educa\u00e7\u00e3o M\u00e9dica, Faculdade de Medicina, Universidade do Porto, Porto, Portugal"}]}],"member":"239","published-online":{"date-parts":[[2021,3,15]]},"reference":[{"key":"2025121400021482000_11.3.e044289.1","doi-asserted-by":"crossref","unstructured":"Baker DJ . 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