Methodological guidelines and recommendations for efficient and rational governance of patient registries

Hdl Handle:
http://hdl.handle.net/10147/583633
Title:
Methodological guidelines and recommendations for efficient and rational governance of patient registries
Authors:
Zaletel, Metka; Kralj, Marcel
Citation:
Methodological guidelines and recommendations for efficient and rational governance of patient registries [Electronic source] / editors Metka Zaletel, Marcel Kralj. - El. book. - Ljubljana : National Institute of Public Health, 2015
Issue Date:
2015
URI:
http://hdl.handle.net/10147/583633
Item Type:
Other
Language:
en
Description:
Policy makers, researchers, healthcare professionals and many others are daily facing the challenge of how to prioritise their activities and actions in different areas of their responsibilities. In the health area, their decisions are often influenced by the reality of the needs of an aging population on the one hand and restricted resources on the other. They can only make as good informed decisions as the quality and availability of data they use in the process. Patient registries, which were designed for patients with sharing characteristics (diagnosis, implanted device, therapy, risk of developing a disease), have for decades served as an important source of the data needed to assess clinical performance, provide health technology assessment or assess policy implications on a local, regional, national and in some cases international level. As a result, hundreds of registries have been set up, ranging from paper based spreadsheets in a physician’s office to international rare disease initiatives coupling clinical and genetic data as well as bio-banks. In the last fifteen years information technology has given us an opportunity to greatly redesign the way we make informed decisions about individual patients as well as entire populations by, among other things, enabling clinicians to collect, share, compare and analyse large amounts of patient data.
Keywords:
PATIENT RECORDS; DATA STORAGE
ISSN:
9789616911757

Full metadata record

DC FieldValue Language
dc.contributor.authorZaletel, Metkaen
dc.contributor.authorKralj, Marcelen
dc.date.accessioned2015-12-11T10:26:57Zen
dc.date.available2015-12-11T10:26:57Zen
dc.date.issued2015en
dc.identifier.citationMethodological guidelines and recommendations for efficient and rational governance of patient registries [Electronic source] / editors Metka Zaletel, Marcel Kralj. - El. book. - Ljubljana : National Institute of Public Health, 2015en
dc.identifier.issn9789616911757en
dc.identifier.urihttp://hdl.handle.net/10147/583633en
dc.descriptionPolicy makers, researchers, healthcare professionals and many others are daily facing the challenge of how to prioritise their activities and actions in different areas of their responsibilities. In the health area, their decisions are often influenced by the reality of the needs of an aging population on the one hand and restricted resources on the other. They can only make as good informed decisions as the quality and availability of data they use in the process. Patient registries, which were designed for patients with sharing characteristics (diagnosis, implanted device, therapy, risk of developing a disease), have for decades served as an important source of the data needed to assess clinical performance, provide health technology assessment or assess policy implications on a local, regional, national and in some cases international level. As a result, hundreds of registries have been set up, ranging from paper based spreadsheets in a physician’s office to international rare disease initiatives coupling clinical and genetic data as well as bio-banks. In the last fifteen years information technology has given us an opportunity to greatly redesign the way we make informed decisions about individual patients as well as entire populations by, among other things, enabling clinicians to collect, share, compare and analyse large amounts of patient data.en
dc.language.isoenen
dc.subjectPATIENT RECORDSen
dc.subjectDATA STORAGEen
dc.titleMethodological guidelines and recommendations for efficient and rational governance of patient registriesen
dc.typeOtheren
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