Aim

As part HDR UK’s Transforming Data for Trials Programme, the Alliance aims to establish a regular forum for stakeholders to discuss barriers to effective use of healthcare systems data (HSD) in clinical trials, how these can be addressed and to prioritise the necessary actions to realise these potential benefits. This forum will facilitate an exchange of ideas between data providers, consumers of trial results and the clinical trials community. This includes prioritising, providing, endorsing, or commissioning research and/or practical guidance on obtaining and using HSD efficiently, with internationally reliable interpretability.

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Progress to date

The inaugural meeting of the Alliance, held on 5th December 2023, brought together over 50 key stakeholders from the health research and clinical trials sectors to explore ways to address challenges in delivering data-enabled trials. Chaired by Professor Matt Sydes and Associate Professor Marion Mafham, the meeting aimed to articulate the forum’s rationale, purpose, and the hurdles in data-enabled trial delivery. Presentations included introductions to HDR UK and the Alliance, insights into the COMORANT-UK study’s use of routinely collected health data, and discussions on dataset quality and data utility comparisons from the ASCENT study.

Meeting 1 outputs (5th December 2023)

The second meeting, convened on 18th April 2024, gathered 35 stakeholders from diverse sectors to establish priority actions for improving data access for clinical trials and consented cohorts. Again chaired by Professors Matt Sydes and Marion Mafham, the meeting explored challenges faced by data custodians, the costs and impacts of overcoming these barriers, and facilitated a conversation around prioritising challenges that need to be addressed. Presentations covered various topics, including appropriate wording for participant materials in trials, the NHS DigiTrials service portfolio, data linkage for national research by SAIL Databank, and lessons on dataset quality from CPRD.

Meeting 2 outputs (11th April 2024)

The 3rd meeting, convened on 11th September 2024 delved into the priority area of administrative burdens/challenges that trialists face when navigating complex legal/information governance frameworks and varied regulations across regions. In particular, when obtaining and maintaining approvals during data application processes.

Meeting 3 outputs (11th September 2024)

Next Steps

  • Begin drafting a green paper to articulate the need and describe potential approaches that will be of use to policy makers and key decision makers.
  • Reach out to volunteers to form a working group of stakeholders to support the development of this paper.

Future meetings have been scheduled as below.

  • Tuesday 10th December 2024 (13:00 – 14:30)

Please contact us via ukalliance@hdruk.ac.uk if you would like to be involved.