RDM in Public Health: Reporting from the NHS-HE Forum

17 December, 2013

The boundary between academic research and the UK National Health Service is an interesting place to be. There is a large and valuable pool of data held within the NHS that could prove to be a powerful driving force for research, provided that access can be handled correctly.

The members of the NHS-HE forum are negotiating this complicated frontier in a variety of ways and the lessons learned are often widely applicable across the academic sphere. Some were highlighted at the forum’s most recent meeting on the 28th of November at Regent’s University, London.

There was a lot of interesting discussion around the day’s presentations, two likely to be of particular interest to the DCC community came from the University of Leicester’s Jonathan Tedds and UCL’s Trevor Peacock.

 

BRISSKit

Jonathan Tedds gave the forum an update on forward plans for the BRISSKit project, which was most recently developed under the JISCMRD University Modernisation Fund. BRISSKit provides a means for researchers in a university environment to connect with NHS patient data, facilitating cohort studies, with modules handling patient registration, clinical sample management, questionnaire delivery and data management. The project has now secured further funding from HEFCE and Jisc, which will support the continuation of pilot integration studies and allow the team to bring the service to the public. The project’s target is to have the first BRISSKit module available for public use by the middle of 2014 with the full platform accessible by the end of 2015.

BRISSKit has expanded its base of collaborators to include IBM, the ALSPAC longitudinal study (University of Bristol) and University of Leicester groups working in Genomics and Data Knowledge.

The sustainability of the platform is facilitated through a dual model, in a similar vein to that used by the Ubuntu community. The code for the platform will be owned and maintained through an .org site allowing licensing and development to be delivered in a not-for-profit manner, whilst service offerings based on the platform will be delivered through a separate .com domain.

 

UCL Information Governance Advisory Service

Creating a joined-up support service from the ground up is a delicate balancing act, incorporating elements of requirement gathering, infrastructure development, training and advocacy.

Trevor Peacock discussed the progress that’s been made setting up UCL’s Information Governance Advisory Service. The service offers comprehensive support for researchers wishing to access NHS patient data not covered by consent or confidentiality agreements through compliance with the NHS Information Governance Toolkit. In part this is thanks to new, self-contained infrastructure which offers a secure and scalable way to store and access data in line with IGT and ISO 27001/2 information security requirements.

This is coupled with an advice service that helps guide researchers through the application process for IGT compliance. As we have seen before, without experienced support researchers can find the process taking upwards of 18 months to complete. At UCL, the turnaround time for an IGT application is now one month.

The advice service is also responsible for training and advocacy, their website hosts useful materials on information security and encryption, and they have successfully trialled events such as USB amnesties and encryption clinics.

 

Other discussions

Stephen Andrews from the Harrogate and district NHS trust spoke about testing collaborative spaces for research data. His experiences were primarily with the Google+ and Jive platforms, with the Google offering edging ahead thanks to its greater focus on data handling. However, many delegates require secure platforms for collaboration using sensitive data - not a feature of either of these systems. Two potential solutions to this problem were suggested in discussion. The government managed GCloud has collaborative tools that have achieved IL2 accreditation and are aiming to achieve IL3 in the future. Another option mentioned was the Workshare platform; developed by the legal profession, this offers a secure collaborative platform and stores all data within the EU in servers based in Ireland.

Betty Anagnostelis gave an update on the Access to Research initiative, which completed a technical pilot at the start of December and will expand into a two year, UK-wide phase. The scheme improves public access to the outputs of research by making a range of scientific journal articles available online through local libraries.

I’ll finish with a thought from John Ainsworth of the Farr Institute who said that one of the key challenges to the health research sector as it moves forward is addressing the skill gap in health data science; a challenge I’m sure colleagues in many other disciplines could identify with.