Digital transformation to enable a FAIR approach for health data science
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The document outlines the efforts of Health Data Research UK to unite the UK's health data for better access and discovery in health data research. It emphasizes the importance of improving findability, accessibility, interoperability, and reusability of health data, while actively involving the public and patients in the process. The Innovation Gateway is highlighted as a key platform for researchers to discover and access diverse health datasets, supporting data-driven research for improved health outcomes.
Digital transformation to enable a FAIR approach for health data science
- 1. Digital transformation to enable a FAIR approach for health data science ConTech Pharma 2022 Varsha Khodiyar, PhD 1st March 2022
- 2. What I’ll cover • Introduction to Health Data Research UK and our work • Infrastructure for data discovery (Findability) • Facilitating access to data (Accessibility) • Improving data linkage (Interoperability) • Demonstrating data reuse (Reusability) • Public patient partnerships (considerations beyond FAIR)
- 3. HDR UK is the national institute for health data science Our mission is to unite the UK’s health data to enable discoveries that improve people’s lives. Our 20-year vision is for large scale data and advanced analytics to benefit every patient interaction, clinical trial, and biomedical discovery. | 3
- 4. Working in partnership with patients, the national health service (NHS), universities, business & charities to create a world-leading and robust health data infrastructure | 4 Gearing up the UK for quality health care, research and innovation Enabling data science and innovation as a catalyst for change Facilitating standardization of data access and information governance
- 5. | 5 The Alliance: network of experts committed to define best practice in the use of data Hubs and DSCs: Data science centres and research hubs that provide services of data curation and access Research: Data- driven research through our research sites and promote open science Training for researchers through our HDR UK Future platform The Gateway: platform for discovery of and access to UK data and samples available for research Our strategy focuses on uniting, improving and using health data
- 6. Infrastructure for data discovery Findability
- 7. The Innovation Gateway for health data discovery | 7 “Really impressed with this resource. I think as a gateway to search by data type and indication, it’s a really powerful tool.“ David Leather, GSK
- 8. ✓ Search datasets by keywords/publisher or by themed collection. ✓ For some datasets: a Cohort Discovery Tool enables search population data based on characteristics required. ✓ Find summary and technical metadata for datasets. ✓ Transparency on requirements for accessing data. ✓ Request access directly via the Gateway, user-friendly end-to-end data access request management system. ✓ Upload your papers and tools and create your own thematic collection. The Gateway for Researchers www.healthdatagateway.org/about/innovators-and-researchers
- 9. Searching for data in the Gateway • Wide-range of health datasets from cardiovascular, to maternal health, primary care, mental health to diabetes and of course COVID-19. • Biobank physical samples and tissues also listed. • Range of disciplines: e.g. emergency care, cardiovascular, maternal health, cancer • Types: primary care, secondary care, acute care, palliative care, research cohorts • Purpose of initial data collection: clinical care (40%), clinical trials (38%), administration (34%) Covering all four nations of the UK and discoverable via a shared ‘front door’ 49% 19% 17% 9% 7% England Wales Scotland NI International
- 10. Cohort Discovery on the Innovation Gateway Co-vars Inc. Crit Exc. Crit Custodian controlled Cohort Query Agents Statistical Disclosure Control Policies: • User validation (e.g. Bona-fide Researcher) • Low number suppression (e.g. >50) • Query Count binning (e.g. 50, 60, 70, -) • Query Rate limiting • Researchers can reuse the cohort query to define their research protocol when submitting their data access request • Researchers will be able to reuse and compare cohort definitions between similar protocols • Cohort definitions will be able to reuse phenotype definitions (asthma, diabetes) without the need for ICD-10, Read, SNOMED-CT codes Cohort Discovery enables researchers to discover, assess and request access to potential datasets that exactly match the research project cohort definition using standardized inclusion & exclusion criteria and co-variates Datasets with female patients between 18-35 who have asthma and diabetes and who are not smokers and not pregnant Innovation Gateway Query Engine Dataset 1: 20K Dataset 2: 3K Dataset 3: 1K … Total Patients: 23K Demo: https://www.youtube.com/watch?v=L50nqIR6k98
- 11. Facilitating access to data Accessibility
- 12. The Gateway for Data custodians ✓ Facilitate discoverability and accessibility of your data resources. ✓ Implement best practice for health data governance and sharing. ✓Cohort Discovery tool to improve discovery of your consented patient cohorts. ✓ Create collections of datasets and samples to increase findability of your resources. ✓ Provide data access in a trustworthy manner, using the Five Safes framework. ✓ Fully digital system to manage your data access requests
- 13. Gain insight into data reusability prior to requesting access | 13 Technical details & metadata wheel Data utility
- 14. Enabling a common, transparent approach to data access management based around the Five Safes framework | 14 1. Safe People e.g. Approved researchers scheme 2. Safe Projects Project proposal reviewed by governance board convened by the data custodian 3. Safe Settings Data access provided within a Trusted Research Environment 4. Safe Data Data supplied as deidentified to minimize identification of individuals 5. Safe Output Analysis outputs checked by data custodians prior to release
- 15. Aligning approaches to evaluation of public benefit in data access request applications The National Data Guardian guidance on public benefit will be published later in the year ➢ How will you demonstrate that use of data requested will deliver public benefit? ➢ Do you anticipate any risks to individuals, and if so, what steps have you made in your proposal to mitigate the risks?
- 17. Towards an interoperable infrastructure: Federation – Metadata Catalogues, Cohort Discovery & Trusted Research Environments Query Engine Federated Data Custodian Environments (No Direct Access) Cohort Discovery Link Agents Federated Analysis Federated Trusted Research Environments Common API Trusted Research Environments Federated Metadata Catalogues A TRE is a highly secure environment used for saving, accessing and analysing health and care data. Within any TRE there are multiple layers of security and safeguards in place, to minimise the risk of data being misused.
- 18. | 18 Data Utility Matrix International links Data Quality Tool Evaluation Data Officers Groups / Hubs Position/consultation papers Projects (Eg COVID-19) Metadata completeness SIGs (FHIR, Synthetic data,etc) Gateway development and streamlined access management are underpinned by harmonisation of principles and best practice as driven by the Alliance Developing and implementing community agreed standards to maximise interoperability
- 19. Improving Data Utility: produce guidance and policy regarding data quality, standards, dataset publishing, data provenance, ontology / terminology services and use. Output: data utility framework Promoting participation and improving access: Ensure consistency and harmonise principles, definitions, process steps to develop a best practice for assessing requests to access UK health data. Output: harmonised five safe DAR Enabling FAIR data Aligning approaches to trusted research environments: secure analytics environments. Output: recommendation for a TRE standard Improving transparency in data use: understand interests and values of people in health data. Output: recommendations for a data use register standard
- 21. | 21 | 21 • A data use register is a record showing when and why a dataset has been shared with another organisation. • Data uses are not always made public. There is also a lack of standardisation for data use registers (content, functionality and purpose). Data Use Registers
- 22. By establishing a core set of standards for Data Use Registers, we hope to… •develop a culture of openness amongst health data custodians •increase transparency in the use of health data for research and innovation • HDR UK Alliance members agree to transparency of governance and operations •build public trust by demonstrating the value and benefit of using health data • National Data Guardian and Understanding Patient Data highlight that ‘transparency cannot be separated from public benefit’ •generate insights into how health data are used and accessed | 22 - Public contributor- “Being clear how data is used, is a vital step to ensure the whole process is meaningful and trusted, in terms of outcomes, cost effectiveness and public trust.”
- 23. Developing the Data Use Register standard Community involvement • Collaborative approach with input from public and lay representatives, data custodians, researchers, policy makers and funders (more than 100 people and 50 orgs contributed to the standard) Analysis of 48 health data custodian entities - May 2021 green paper • Nearly 50% of data custodians do not publish information about data use Public consultation on green paper - July 2021 • Recommendations supported by 93% of respondents Recommendations for Data Use Registers - Jan 2022 white paper • Recommendations presenting a minimum standard for data use registers Development of a Gateway data use register - ongoing • Implementation of the Data Use Register recommendations on HDR UK’s Innovation Gateway Data use register standards white paper doi.org/10.5281/zenodo.5902743
- 24. Inclusion of patient and lay public groups for fairer health data Moving beyond ‘FAIR’
- 25. | 25 I am glad you're involving me from what seems to be the beginning so that you can actually take my concerns and address them whilst helping the greater good Patient / Public Voice Rep “ It is essential that the public is included in this ground-breaking work. Margaret Rogers Member of the HDR UK Public Advisory Board “ 92 people consulted to inform decisions on methods and process for clinical trial recruitment Consultation on COVID work across 7 UK- wide patient and public networks with 168 responses. 16,500 contacts with patient & public contributors across the institute in 2020 Strong Public Advisory Board providing strategic guidance on all our work HDR UK exemplifies working with public and patients on all aspects of health data science
- 26. Webinars for the lay public on health data science | 26 www.hdruk.ac.uk/events/data-access-discovery
- 27. Summary • HDR UK is uniting the UK’s health data access for researchers. • The Innovation Gateway facilitates discovery and access to health data • Increasing the FAIRness of data, by increasing the F, A, I of (meta)data, and indicating the R of data. • Demonstration of the importance of patient and lay public involvement in all aspects of health data research. • HDR UK is laying the foundations for an international alliance to enable a data-centric response to COVID-19 and other health challenges | 27
- 28. Thank you Varsha Khodiyar, PhD @varsha_khodiyar [email protected] Health Data Research UK www.hdruk.ac.uk @HDR_UK Visit the Gateway www.healthdatagateway.org
- 29. Links and resources Health Data Research UK: https://www.hdruk.ac.uk/ UK Health Data Research Alliance: https://ukhealthdata.org/ The Health Data Research innovation Gateway: https://www.healthdatagateway.org/ Data use register standards green paper: https://zenodo.org/record/5084761#.YZq_t9DP02w HDR UK Futures: https://www.hdruk.ac.uk/careers-in-health-data-science/continued-professional- development/power-up-your-health-data-science-knowledge/ Working in a Trusted Research Environment: https://www.youtube.com/watch?v=8CBy7mGFcEY The importance of public and patient engagement and involvement: https://www.youtube.com/watch?v=tustdIQu4ZQ An introduction to the Innovation Gateway: https://www.youtube.com/watch?v=U7mZ7cNE_KQ