Ageing Data Research Collaborative @geridata

Published date

03 February 2020

Last updated

22 September 2020

Authors

@geridata

Links, information and contacts for making the best use of big data in your area.

Purpose of the Ageing Data Research Collaborative

Our chief aim is to promote big data research among the geriatric medicine community, and work to increase the dialogue between data science and clinicians particularly in the field of ageing research.

Members of the Collaborative

Atul Anand (Geriatrics SpR, Edinburgh)
Cini Bhanu (GP, London)
Jenni Burton (Geriatrics SpR, Glasgow)
Jonathan Hewitt (Geriatrics & Stroke Consultant, Cardiff)
Joe Hollinghurst (Data scientist, Swansea)
James van Oppen (ED registrar, Leicester)
Terry Quinn (Geriatrics & Stroke Consultant, Glasgow)
Oliver Todd (Geriatrics SpR, Bradford)
Katherine Walesby (Geriatrics SpR, Edinburgh)
Chris Wilkinson (Cardiology SpR, Newcastle)

Committee meetings

Meetings are approximately three times per year, via teleconference, made possible with the support of the British Geriatrics Society.

New members welcome
Please contact @geridata

England data resources

Office for National Statistics (ONS)
www.ons.gov.uk

The ONS provide UK-wide and nation-specific data across a wide range of topics, including health and social care. Data are available on life expectancy, population data, health status and drug use, among many others.

Hospital Episode Statistics (HES)
https://digital.nhs.uk/data-and-information/data-tools-and-services/dat…

HES contains data on all admissions, A and E attendances and outpatient appointments at NHS hospitals in England. Clinical, demographic, administrative and geographical data are included. A selection of data tables and analyses are available on the website, but It is also possible to apply for bespoke extracts.

Public Health England (PHE)
www.gov.uk/government/organisations/public-health-england/about/statist…

PHE collects and publishes statistics on public health topics including health protection and health improvement.

Open Prescribing

https://openprescribing.net

This resource is run by the Evidence Based Medicine data lab at the University of Oxford, and provides a portal to run your own analyses on anonymised GP prescription data.

The UK data service

www.ukdataservice.ac.uk/about-us.aspx

The UK data service provides access to UK-wide (and England specific) study data including government-sponsored surveys, cross-national surveys, longitudinal studies, UK census data, international aggregate, business data, and qualitative data.

Primary care data

A number of providers offer access to primary care data for research use, including:

ResearchOne
www.researchone.org
Clinical Practice Research Datalink (CPRD)
http://www.cprd.com
Clinical research using LInked Bespoke studies and Electronic health Records (CALIBER)
www.ucl.ac.uk/health-informatics/caliber
The Health Improvement Network (THIN)
www.the-health-improvement-network.co.uk
QResearch
www.qresearch.org

Scotland data resources

National Records of Scotland
www.nrscotland.gov.uk
Baseline population statistics.

Public Benefit and Privacy Panel (PBPP) Scotland
www.informationgovernance.scot.nhs.uk/pbpphsc
Permissions process for data linkage research approvals in Scotland.

Electronic Data Research and Innovation Service (eDRIS)
www.isdscotland.org/Products-and-Services/eDRIS
Support approvals process and management of National Data Safe Haven.

Administrative Data Research Scotland (ADRC)
www.adruk.org/about-us/our-partnership/adr-scotland
Partnership between Scottish Government’s Data Sharing and Linkage Unit and the Scottish Centre for Administrative Data Research.

Community Health Index
www.ndc.scot.nhs.uk/Dictionary-A-Z/Definitions/index.asp?ID=128&Title=C…

Useful papers

Application process

Iveson & Deary: https://wellcomeopenresearch.org/articles/4-97
Walesby, et al.: www.rcpe.ac.uk/sites/default/files/jrcpe_47_2_walesby.pdf

Data sources

Prescribing Information System: https://www.ncbi.nlm.nih.gov/pubmed/27165758
Social care data: https://ijpds.org/article/view/1108
ISD Health and Social Care: https://www.isdscotland.org/Health-Topics/Health-and-Social-Community-C…
Discovery: https://www.nssdiscovery.scot.nhs.uk

General guidance

Aitken, et al. Consensus statement on Public Involvement and Engagement: https://ijpds.org/article/view/586
Benchimol, et al. RECORD Statement: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed…
Doubal, et al. Big data and data repurposing: https://www.ncbi.nlm.nih.gov/pubmed/28412946

Wales data resources

Secure Anonymised Information Linkage (SAIL) databank
https://saildatabank.com
The SAIL Databank is a world-class flagship for the robust secure storage and use of anonymised person-based data for research to improve health, well-being and services. Its databank of anonymised data about the population of Wales is internationally recognised. Backed and endorsed by the Government, the SAIL Databank receives core funding from the Welsh Government’s Health and Care Research Wales.

Health Data Research UK (HDRUK)
www.hdruk.ac.uk
Health Data Research UK aims to unite the UK’s health data to enable discoveries that improve people’s lives.

StatsWales
https://statswales.gov.wales/Catalogue
Official statistics for Wales.

Administrative Data Research UK (ADR UK) Wales
www.adruk.org/about-us/our-partnership/adr-wales
is a partnership transforming the way researchers access the UK’s wealth of public sector data, to enable better informed policy decisions that improve people’s lives.

Dementias Platform UK (DPUK)
www.dementiasplatform.uk
DPUK is a public-private partnership funded by the Medical Research Council, working across traditional boundaries, bringing researchers from universities and industry together in the fight to develop effective treatments for dementia fast.

Useful papers

SAIL

Lyons RA, Jones KH, John G, Brooks CJ, Verplancke J-P, Ford D V, et al. The SAIL databank: linking multiple health and social care datasets. BMC Med Inform Decis Mak [Internet]. 2009;9(1):3. Available from: http://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/1472-694…
Ford D V, Jones KH, Verplancke J-P, Lyons RA, John G, Brown G, et al. The SAIL Databank: building a national architecture for e-health research and evaluation. BMC Health Serv Res [Internet]. 2009;9(1):157. Available from: http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-9-…
Jones KH, Ford D V., Jones C, Dsilva R, Thompson S, Brooks CJ, et al. A case study of the secure anonymous information linkage (SAIL) gateway: A privacy-protecting remote access system for health-related research and evaluation. J Biomed Inform. 2014;

eFI

Andrew Clegg, Chris Bates, John Young, Ronan Ryan, Linda Nichols, Elizabeth Ann Teale, Mohammed A. Mohammed, John Parry, Tom Marshall, Development and validation of an electronic frailty index using routine primary care electronic health record data, Age and Ageing, Volume 45, Issue 3, May 2016, Pages 353–360, https://doi.org/10.1093/ageing/afw039
Joe Hollinghurst, Richard Fry, Ashley Akbari, Andy Clegg, Ronan A Lyons, Alan Watkins, Sarah E Rodgers, External validation of the electronic Frailty Index using the population of Wales within the Secure Anonymised Information Linkage Databank, Age and Ageing, September 2019, afz110, https://doi.org/10.1093/ageing/afz110

General guidance

The EQUATOR network: Enhancing the QUAlity and Transparency Of health Research. The website contains reporting guidelines for different study types including observations studies (STROBE).
www.equator-network.org

Connect and get involved

Get involved, connect with colleagues and join others interested in harnessing the potential of big data by emailing the Ageing Data Research Collaborative, following @geridata on Twitter, by utilising the BGS Members Directory or by leaving a message via the form below.