Understanding patient data

https://understandingpatientdata.org.uk/

A newly set up group based at the Wellcome Trust in the UK.

"Understanding Patient Data has been set up to support better conversations about uses of health information. We think that responsible use of patient data has the potential to improve everyone’s health and deliver better care. It is important that everyone can find out how patient data is used and why, and understand more about the safeguards that are in place to protect patient confidentiality.   

Our aim is to develop tools and resources to help inform discussions and support responsible uses of data."

There are some great resources here e.g.

•  studies about how people feel about use of their data
• advice on words to use when talking about reuse of data
• identifyability demystified
• how is data kept safe

Machine-actionable data management plans (maDMPs)

White paper: Machine-actionable data management plans (maDMPs)

This report presents outputs of the International Digital Curation Conference 2017 workshop on machine-actionable data management plans. It contains community-generated use cases covering eight broad topics that reflect the needs of various stakeholders. It also articulates a consensus about the need for a common standard for machine-actionable data management plans to enable future work in this area.

See: http://riojournal.com/articles.php?id=13086 

Citation: Simms S, Jones S, Mietchen D, Miksa T (2017) Machine-actionable data management plans (maDMPs). Research Ideas and Outcomes 3: e13086. https://doi.org/10.3897/rio.3.e13086

The Initiative for Open Citations (I4OC)

The Wikimedia Foundation, in collaboration with 29 publishers and a network of organizations, including the Public Library of Science (PLOS), the Internet Archive, Mozilla, the Bill & Melinda Gates Foundation, the Wellcome Trust, and many others, announced the Initiative for Open Citations (I4OC), which aims to make citation data freely available for anyone to access. DataCite is a founding member.

See Initiave for Open Citations: https://i4oc.org/ 

Related blog post: https://blog.wikimedia.org/2017/04/06/initiative-for-open-citations/

Preserving data at risk

"This document is intended to describe considerations for data rescue activities in relation to the day-to-day work of existing federal and federally-funded [USA] Earth science data archiving organizations". See:

https://doi.org/10.6084/m9.figshare.4816474.v1

Citation:

mayernik@ucar.edu; rdowns@ciesin.columbia.edu; Duerr, Ruth; hou@ucar.edu; natalie@cos.io; nancy.ritchey@noaa.gov; Thomer, Andrea; yarmel@rpi.edu (2017): Stronger together: the case for cross-sector collaboration in identifying and preserving at-risk data. figshare. https://doi.org/10.6084/m9.figshare.4816474.v1