From 19bf8cf8b69c15b3a946d5ee7bdedb366809912e Mon Sep 17 00:00:00 2001 From: Martin Cook Date: Wed, 24 Jul 2024 17:16:10 +0100 Subject: [PATCH] Update data-description/human-clinical-and-health-data.md Co-authored-by: Bert Droesbeke <44875756+bedroesb@users.noreply.github.com> --- data-description/human-clinical-and-health-data.md | 2 +- 1 file changed, 1 insertion(+), 1 deletion(-) diff --git a/data-description/human-clinical-and-health-data.md b/data-description/human-clinical-and-health-data.md index 24f81af3..109fbc36 100644 --- a/data-description/human-clinical-and-health-data.md +++ b/data-description/human-clinical-and-health-data.md @@ -72,7 +72,7 @@ Metadata is essential in infectious disease settings for: #### Considerations - * The infectious disease field is rather new to the concept of metadata, so cataloguing information about datasets is implemented less systematically than in other fields. However, with the new [European Health Data Space](https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en#:~:text=The%20European%20Health%20Data%20Space%20will%20provide%20a%20trustworthy%20setting,Network%20and%20Information%20Systems%20Directive.) legislation, this is likely to change soon. One of the key action points of the legislation includes the development of national metadata catalogues for promoting the reusability of data. Front runners such as Finland (Findata](https://findata.fi/en/) will have little to do. Most other European countries, though, have started discussions on how to begin or continue developing a metadata catalogue for health data. + * The infectious disease field is rather new to the concept of metadata, so cataloguing information about datasets is implemented less systematically than in other fields. However, with the new [European Health Data Space](https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en#:~:text=The%20European%20Health%20Data%20Space%20will%20provide%20a%20trustworthy%20setting,Network%20and%20Information%20Systems%20Directive.) legislation, this is likely to change soon. One of the key action points of the legislation includes the development of national metadata catalogues for promoting the reusability of data. Front runners such as Finland ([Findata](https://findata.fi/en/)) will have little to do. Most other European countries, though, have started discussions on how to begin or continue developing a metadata catalogue for health data. * Given the diverse types and sources of human clinical and health data, it is crucial to provide detailed information about study and data collection methods. This allows researchers to assess the reliability of the data and how competently it was generated. The information is usually organised following research community guidelines, and then structured as metadata to make the data FAIR. In a registered study, it is important to give information that helps people retrieve more information on the study itself (e.g. external links and published material). * It is crucial and mandatory to describe how the privacy of human research subjects and patients was guaranteed. Whilst providing complete data descriptions is advisable, some data will need to be anonymised before it can be shared. You should describe how and why sensitive data were masked or removed (see [Handling of health data](#handling-of-health-data) below)