I have been honoured this week to participate at the Research Data Alliance (RDA) virtual Plenary 16 (9-12th November 2020).
Since the begin of the UK Covid-19 lockdown, I have joined a volunteer community of over 600 professionals from 145 countries, working to create Covid-19 guidelines and recommendations for data sharing, as part of the RDA Covid-19 working group.
I have been co-moderator of the community participation working group creating recommendations and guidelines on Covid-19 open data sharing and a Covid-19 resource database.
During the Covid-19 Panel at RDA Adoption Session, I presented these recommendations on behalf of my co-members of the Community Participation working group to further increase global dissemination of the guidelines.
As PPI lead for the NIHR BRC Musculoskeletal theme, I am a passionate champion for public and patient involvement in research and was instrumental in including the recommendation which encourages public and patient involvement (PPI) throughout the data management lifecycle from research question to final data sharing and usage.
At the plenary, I also gave a presentation to the Citizen Science and Community Participation session on ‘Patient and Public Involvement in Research: Considerations for Citizen Science’ discussing the potential involvement of different communities in data collection and management.
I am grateful to the NIHR Nottingham BRC Musculoskeletal theme for funding my attendance at the plenary.
A news release about the Research Data Alliance’s Covid-19 recommendations regarding data sharing can be read at https://www.rd-alliance.org/global-research-data-alliance-community-response-global-covid-19-pandemic.
The final guidelines are published as RDA Covid-19 Working Group. Recommendations and Guidelines on data sharing. Research Data Alliance, 2020. DOI: doi.org/10.15497/rda00052.