FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W3139075010> ?p ?o ?g. }

• W3139075010 endingPage "e044289" @default.
• W3139075010 startingPage "e044289" @default.
• W3139075010 abstract "Introduction International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. 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. Methods and analysis 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. Ethics and dissemination The Ethics Committee for Health from the University Hospital Centre São João/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." @default.
• W3139075010 created "2021-03-29" @default.
• W3139075010 creator A5010482785 @default.
• W3139075010 creator A5043158513 @default.
• W3139075010 creator A5055779533 @default.
• W3139075010 creator A5073197032 @default.
• W3139075010 creator A5079541400 @default.
• W3139075010 creator A5081112772 @default.
• W3139075010 creator A5082604582 @default.
• W3139075010 creator A5086553535 @default.
• W3139075010 date "2021-03-01" @default.
• W3139075010 modified "2023-10-16" @default.
• W3139075010 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" @default.
• W3139075010 cites W1797697590 @default.
• W3139075010 cites W1803229122 @default.
• W3139075010 cites W1976803075 @default.
• W3139075010 cites W2085583531 @default.
• W3139075010 cites W2088749788 @default.
• W3139075010 cites W2096841797 @default.
• W3139075010 cites W2129660502 @default.
• W3139075010 cites W2142667640 @default.
• W3139075010 cites W2153371116 @default.
• W3139075010 cites W2156908711 @default.
• W3139075010 cites W2171319659 @default.
• W3139075010 cites W2308085519 @default.
• W3139075010 cites W2382720597 @default.
• W3139075010 cites W2414792569 @default.
• W3139075010 cites W2466247112 @default.
• W3139075010 cites W2533026459 @default.
• W3139075010 cites W2551415221 @default.
• W3139075010 cites W2551792675 @default.
• W3139075010 cites W2560085779 @default.
• W3139075010 cites W2575694952 @default.
• W3139075010 cites W2576702935 @default.
• W3139075010 cites W2596192549 @default.
• W3139075010 cites W2754799758 @default.
• W3139075010 cites W2759862759 @default.
• W3139075010 cites W2761123249 @default.
• W3139075010 cites W2769129618 @default.
• W3139075010 cites W2794410716 @default.
• W3139075010 cites W2795340237 @default.
• W3139075010 cites W2800353910 @default.
• W3139075010 cites W2802220410 @default.
• W3139075010 cites W2898605209 @default.
• W3139075010 cites W2898740528 @default.
• W3139075010 cites W2925672674 @default.
• W3139075010 cites W2936593724 @default.
• W3139075010 cites W2947649908 @default.
• W3139075010 cites W2990230006 @default.
• W3139075010 cites W3005594308 @default.
• W3139075010 cites W3011758521 @default.
• W3139075010 cites W3079311333 @default.
• W3139075010 cites W4236079805 @default.
• W3139075010 doi "https://doi.org/10.1136/bmjopen-2020-044289" @default.
• W3139075010 hasPubMedCentralId "https://www.ncbi.nlm.nih.gov/pmc/articles/7959217" @default.
• W3139075010 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/33722870" @default.
• W3139075010 hasPublicationYear "2021" @default.
• W3139075010 type Work @default.
• W3139075010 sameAs 3139075010 @default.
• W3139075010 citedByCount "10" @default.
• W3139075010 countsByYear W31390750102022 @default.
• W3139075010 countsByYear W31390750102023 @default.
• W3139075010 crossrefType "journal-article" @default.
• W3139075010 hasAuthorship W3139075010A5010482785 @default.
• W3139075010 hasAuthorship W3139075010A5043158513 @default.
• W3139075010 hasAuthorship W3139075010A5055779533 @default.
• W3139075010 hasAuthorship W3139075010A5073197032 @default.
• W3139075010 hasAuthorship W3139075010A5079541400 @default.
• W3139075010 hasAuthorship W3139075010A5081112772 @default.
• W3139075010 hasAuthorship W3139075010A5082604582 @default.
• W3139075010 hasAuthorship W3139075010A5086553535 @default.
• W3139075010 hasBestOaLocation W31390750101 @default.
• W3139075010 hasConcept C10138342 @default.
• W3139075010 hasConcept C118552586 @default.
• W3139075010 hasConcept C119857082 @default.
• W3139075010 hasConcept C138816342 @default.
• W3139075010 hasConcept C142724271 @default.
• W3139075010 hasConcept C144024400 @default.
• W3139075010 hasConcept C153997805 @default.
• W3139075010 hasConcept C159110408 @default.
• W3139075010 hasConcept C160735492 @default.
• W3139075010 hasConcept C162324750 @default.
• W3139075010 hasConcept C17744445 @default.
• W3139075010 hasConcept C190248442 @default.
• W3139075010 hasConcept C194943564 @default.
• W3139075010 hasConcept C199539241 @default.
• W3139075010 hasConcept C204787440 @default.
• W3139075010 hasConcept C2779965156 @default.
• W3139075010 hasConcept C2780385302 @default.
• W3139075010 hasConcept C2780877353 @default.
• W3139075010 hasConcept C36289849 @default.
• W3139075010 hasConcept C39389867 @default.
• W3139075010 hasConcept C39549134 @default.
• W3139075010 hasConcept C41008148 @default.
• W3139075010 hasConcept C509550671 @default.
• W3139075010 hasConcept C71924100 @default.
• W3139075010 hasConcept C87156501 @default.
• W3139075010 hasConceptScore W3139075010C10138342 @default.

• next