CO-CONNECT - the metaverse of useable Research Data at scale

This informative, accessible talk given by HIC’s Director, Professor Emily Jefferson on 25th March 2022 discusses the CO-CONNECT project, how it fits into HDR’s UK Innovation gateway and casts an eye to the future:

CO-CONNECT – COVID – Curated and Open aNalysis aNd rEsearCh plaTform

RDS agree collaboration framework with RSH to support research for the public good

Research support that will improve health and wellbeing by enabling access to health data.

Research Data Scotland (RDS), which manages access and linkage to Scottish data about people, places and businesses for research, and the Regional Safe Havens (RSHs) have teamed up to support research that will improve health and wellbeing in Scotland by enabling access to health data.

Supported by the Scottish Government’s Chief Scientific Adviser Office, RDS and RHS have agreed a framework for collaboration to work together to improve accessibility of data for research in Scotland.

Under the framework RDS and RHS will support access to public sector data in Scotland for research that has public benefit aligned to RDS’s long-term data strategy and brings significant the benefits of collaboration between organisations working as part of RDS on data access and linkage for research.

The long-term collaboration seeks to build a shared infrastructure and service for researchers with the ambition of improving social wellbeing in Scotland and attracting investment and jobs to our country.

Safe Havens in Scotland were established to support research excellence and rapid access to high-quality health data for research purposes. The RSH provide secure environments supported by trained staff and agreed processes whereby health data can be processed and linked with other related data and made available in a de-identified form for analysis to facilitate research for the public good.

The RSHs provide a safeguard for confidential information when used for research purposes. Any researchers applying for access to health data must adhere to the Safe Haven principles where robust governance procedures ensure the confidentiality of the data.

Scotland’s four RSH operate in the regional hubs of AberdeenDundeeEdinburgh and Glasgow; with a national Safe Haven at Public Health Scotland.

Professor Roger Halliday, chief executive of RDS, said: “Our relationship with the Regional Safe Havens marks a major milestone in RDS’s progress to realise our ambition to enable research projects driven by Scottish public data that  improve social wellbeing in Scotland, and attract investment and jobs to our country.”

“We will work towards developing a broader service model where organisations across the partnership bring their expertise in their individual areas of specialty for the benefit of researcher in the public good.”

Professor Shantini Paranjothy, Grampian Data Safe Haven (DaSH) Clinical Lead, said: "The work with Research Data Scotland will see our experience of working with Social Care Data at a local level with colleagues in the City Council, replicated at a National Level and we are excited to be part of this journey."

Katie Wilde, Grampian Data Safe Haven (DaSH) Technical Lead, said: " We are excited to build upon the work already established with the Scottish Federated Network of Data Safe Havens and bring Research Data Scotland into our fold."

Professor Nick Mills, British Heart Foundation Chair of Cardiology and Senior Responsible Officer for Data-Driven Innovation in Health & Social Care at the University of Edinburgh, said: "At DataLoch, we are delighted to formally extend our collaborations with the other Safe Havens in Scotland and RDS. This step renews an important national foundation for the Safe Havens and our shared approach in securely bringing together de-identified health data for research.

“These datasets are the cornerstone for delivering improved frontline services, ultimately enhancing population-wide health and wellbeing, but this goal can only be achieved in close partnerships like this."


Charlie Mayor, Safe Haven Manager, NHS Greater Glasgow and Clyde, said: “NHS Greater Glasgow and Clyde looks forward to being a key partner in this collaboration, which will bring significant benefits to the communities we serve. By improving research projects, we can improve health and social wellbeing through better outcomes which make a positive impact across Scotland.”

Professor Emily Jefferson, Director of the Health Informatics Centre (HIC), Dundee Safe Haven, said: “We are delighted to be a collaborator within RDS. RDS will help us to streamline cross Safe Haven activity and linkage to non-health data. This will enable Scotland to scale and make research more efficient providing faster realisation of the patient and public benefits.”

Over the next six months researchers will benefit from:

  • The unique data offering available at each RSH
  • Guidance in project mapping
  • Guidance on how RSH data can be accessed and linked
  • Links to RSH metadata catalogues
  • An approval route for RSH data
  • Researcher Information Governance requirements for RSH datasets
  • Improved transparency for researchers on their project’s progression through the access landscape


Professor Halliday said: “In the future researchers will benefit from the development of shared approaches and policies on public engagement and transparency about what RDS does and who is accessing its services; a simple and seamless process for accessing and linking data for researchers led by information governance will speed up the cycle of data-driven research and innovation and provide a greater range of data services available.”

Meanwhile, RDS will host communication workshops which will champion the use of RSH data in national research programmes, while ensuring the technical infrastructure allows the Scottish safe haven model to fit with other UK initiatives using common data mapping languages.

Other benefits RDS are seeking to deliver long-term include:

  • Establishing streamlined secure data transfer processes for non-health data into RSH when required for bespoke research requests
  • Developing streamlined secure data transfer procedures between RSH
  • Building RDS user journey tools such including a researcher portal and a digital access form for all approvals processes
  • Establishing Digital Economy Act (DEA) accreditation for RSH allowing additional data linkage opportunities
  • Building on collaborations with industry regarding use of public sector data in machine learning and artificial intelligence

Nine projects funded to inform development of novel and innovative national data research infrastructure

DARE UK and UK Research and Innovation (UKRI) are delighted to announce the award of over £2 million to fund nine research teams to deliver a programme of Sprint Exemplar Projects.

The purpose of the projects is to uncover and test early thinking in the development of a more joined-up and trustworthy national data research infrastructure. This is to support cross-domain analysis of sensitive data at scale for public good.

Full details can be found here:

https://dareuk.org.uk/nine-projects-funded-to-inform-development-of-novel-and-innovative-national-data-research-infrastructure/

Come and work with us!

We are currently recruiting for a number of positions across the HIC team:

Software Programmer 

Senior Data Engineer 

Information Security & Governance Manager 

TRE Projects Coordinator 

Please just click on the links above to see full details for each of these roles. 

National COVID-19 Chest Imaging Database

An exciting new paper "An overview of the National COVID-19 Chest Imaging Database: data quality and cohort analysis" has just been published at Giga ScienceJournal. You can find it here

Exciting new paper just out

Desiderata for the development of next-generation electronic health record phenotype libraries:

https://academic.oup.com/gigascience/article/10/9/giab059/6368631?login=true

Announcing the launch of the HDRUK Phenotype Library

A new powerful tool is now on the table for health data research. Launching today, 4th November 2021,  The HDRUK Phenotype Library is a comprehensive, open access resource providing the research community with information, tools and phenotyping algorithms for UK electronic health records.
https://phenotypes.healthdatagateway.org/

A new exciting leadership role

An exciting leadership role has opened up with the Health Informatics Centre to be our Deputy Director for a UK Wide Research Data Hub. We are looking at candidates now for this post, if you are interested in finding out more we would love to hear from you. Full details of the role can be found on the University of Dundee website.

HIC support this Joint Statement from the Medical and Social Research Community

GP health data are crucial for the planning and provision of health services and to enable research discoveries that save and improve people’s lives  

Combatting the COVID-19 pandemic has depended upon the ability to collect, link, access and use health data for research. It has allowed the NHS to identify and protect millions of people at high risk from COVID-19, to deliver and monitor the safety and effectiveness of the COVID-19 vaccination programme, and to identify life-saving treatments for COVID-19, including dexamethasone. These benefits must not stop with COVID-19. They must also extend to people living with other conditions such as mental illness, cancer, heart disease and diabetes.

As representatives of the UK’s medical and social research community, we support the goals of NHS Digital’s GP Data for Planning and Research (GPDPR) – an improved collection of primary care data from general practice systems. NHS Digital’s plans for making health data available for research are not new. NHS Digital has been collecting health data and enabling access by approved organisations for healthcare planning and research for public benefit for many years. What is new is the addition of GP data, which – as has been seen with COVID-19 – can support an even wider range of research to benefit patients.

We are therefore concerned to see the recent portrayal of this as a ‘data grab’. We believe that the trustworthy use of patient data for research that is in the public interest will enable better care, better treatments and better outcomes for the citizens of the UK.

Ensuring the confidence of GPs and patients is crucial and so we are pleased to see there will be more time taken to build transparency, clear communication and ongoing engagement, particularly around how the data will be accessed and commercial use. Whilst undertaking research involving health and social care data it is essential to demonstrate trustworthiness. The UK has expertise in applying safeguards in a scalable and verifiable way. This is exemplified through the UK Health Data Research Alliance’s leadership on Trusted Research Environments (TREs) centred on the “five safes framework”, data use registers, and meaningful public and patient engagement and involvement.

For those who do not wish their data to be included, the National Data Opt-out, which was developed with much consultation across the NHS over several years, provides an important way for people to opt-out of the wider use of their data across the whole NHS system, at any time. However, we hope that with better information on both the benefits and the safeguards of this improved approach, people will choose not to opt-out. It is vital that healthcare planning and research includes and represents all people so that we find treatments, improve care, and deliver positive outcomes for everyone.

 

 

HIC are to lead and collaborate on 3 major new projects researching chronic pain

Pain Hub

HIC are delighted to announce their leadership and collaboration in 3 major new projects researching chronic pain.

University of Dundee scientists and clinicians have secured £5 million in funding to aid research that aims to establish the causes of vulnerability to chronic pain and advance treatment.

Two Dundee-led projects within the University’s School of Medicine have been awarded the funds by the Advanced Pain Discovery Platform (APDP), a funding mechanism created by UKRI, Versus Arthritis and Eli Lily.

Chronic pain affects millions of people in the UK and is often linked to conditions that include headaches, arthritis, cancer, nerve pain, back pain, fibromyalgia and more. To help address treatment challenges and improve the lives of people affected by pain conditions, a better understanding of the mechanisms of pain is needed.

The Alleviate APDP Pain Research Data Hub is led by HIC and aims to deliver a consortium-based platform of national scale, generating discovery and translational science that will break through the complexity of pain and reveal new treatment approaches to address a wide spectrum of chronic and debilitating clinical conditions.

Dundee’s Consortium Against Pain Inequalities (CAPE) project was awarded almost £3M, and Alleviate - APDP Pain Research Data Hub, was awarded £2M. Additionally, more than £1 million of funding will come to the School of Medicine from PAINSTORM, another APDP consortium led by the University of Oxford. HIC is supporting both projects.

The CAPE team will establish whether exposure to adverse childhood experiences contributes to higher levels of chronic pain in the most deprived communities, which fuels more frequent prescriptions of opioid analgesics and may contribute to drug misuse and increasing drug associated deaths.

Professor Tim Hales, Principal Investigator of CAPE, said, “We are delighted with the success of our proposals. This will enable us to build on our preclinical work, which links early life adversity to increased vulnerability to long term pain and adverse effects of powerful opioid pain killers.

“CAPE will now explore the impact of more complex adverse childhood events on chronic pain and responses to treatment in adult patients. If these relationships are evident from our research, the evidence will inform public health approaches and the development of better treatments for chronic pain in vulnerable populations.”

Research to assist Oxford’s PAINSTORM project will also be undertaken in Dundee, directed by Professors Lesley Colvin and Blair Smith, joint leaders of the School of Medicine’s Chronic Pain Research Group. The consortium aims to discover the causes of neuropathic pain, one of the most common and most distressing types of pain, with a view to preventing it and improving its treatment.

The project will make good use of the unique resources already available at Dundee, including the Clinical Research Imaging Facility led by Professor Douglas Steele, enabling large population studies of pain in diabetes, and innovative assessment of people who develop pain because of chemotherapy treatment for cancer. 

Data from CAPE, PAINSTORM and two other ADPD consortia will be captured, hosted, and curated by Alleviate, led by Professor Emily Jefferson, Director of the School of Medicine’s Health Informatics Centre.

Professor Jefferson said, “Our UK-wide pain data hub will deliver world class health data infrastructure and services for pain research, guided by leading experts in pain research and in partnership with the NHS, the APDP consortia, industry partners and people with lived experience of chronic pain.”

Success securing these awards positions the School of Medicine as a major centre for translational chronic pain research.

Further information on the Alleviate APDP Pain Research Data Hub can be found here and on the HDRUK webpage, Twitter and LinkedIn. Also, the UK Research and Innovation website.

 
 
 
 

"Data Saves Lives: The Fight Against COVID-19"

Emily Jefferson, from the University of Dundee, covers the importance of timely, good quality data for both research and public health. Emily describes her group's research and the journey of the Health Informatics Centre (HIC) over the past decade. She describes how the innovative technologies developed by the group are being used to protect patient confidentiality and maintain public trust in the use of health data for research. Such technologies and expertise are now being utilised at scale to support the UK-wide fight against Covid-19 using population-wide health data.

To hear more on what Emily had to say about HIC's fight against COVID-19 click this link https://youtu.be/CKuuY1LNv-0 
 

Cohort Discovery on the HDR Innovation Gateway

Delighted to announce exciting new functionality within the Health Data Research gateway, delivered by the Dundee jointly led CO-CONNECT project. "Cohort Discovery" is a new tool that allows researchers to search by specific population criteria across multiple datasets.  Read the full story 

Using machine learning approaches for multi-omics data analysis

Excited to announce a new publication lead by HIC: Using machine learning approaches for multi-omics data analysis: A review