1
Minutes
Health Informatics Research Advisory Group (HIRAG) held in the Seminar Room, Level 6, Clinical Research Centre, Ninewells Hospital, Dundee on
Wednesday 23 January 2013 at 13.30 – 15:30.
Present: Professor Sir Lewis Ritchie (LR; chair), Professor Andrew Morris (AM), Dr Peter Craig (PC), Professor Charles Swainson (CS), Julia Brown (JB), Professor Marion Bain (MB), Professor Tim Hubbard (TH), Dr Roger Halliday (RH) (by teleconference; until 14:00), Professor Ronan Lyons (RL) (by teleconference).
Apologies: Derek Feeley (DF), Professor Sir Ian Diamond (ID), Dr Graham Spittle (GS)
Minutes: Dr Michael Barber (MiB; Secretary)
1. Welcome, introductions and membership of HIRAG HIRAG 2013/2
1.1 LR welcomed members to the meeting, and asked AM to comment on the membership, and the vision for HIRAG.
1.2 HIRAG is constituted to develop a strategy and recommend investments for enhancing Scotland’s capability for research using electronic health records and is to report within a defined timeline of 18 months. AM stressed the importance of having a broad representation of experts on HIRAG, including those working within Scotland, other areas of the UK, and from industry. HIRAG will work predominately at the interface between the NHS and the academic community, but has cross-representation from the eHealth Strategy Board and the Scottish Government’s National Data Linkage Framework. HIRAG’s role is to add value, rather than duplicate activity, and be outward looking. HIRAG will anticipate and assess the impact of new datatypes becoming routine in electronic health records.
2. A vision for Health Informatics Research in Scotland HIRAG 2013/3
2.1 AM gave a short presentation in support of the ideas expressed in the paper.
2.2 The position of CSO is that Scotland has a huge opportunity with potential to be world leading in health and biomedical informatics, and enhancing progress over the last 30-40 years. However, the landscape is fragmented, and to maximise benefit, coordination with other Government supported initiatives such as the eHealth Strategy Board, and the Scottish Government’s National Data Linkage Framework is imperative.
2.3 The UK Government Strategy for Life Science (2011) flagged innovation in health and wealth creation with the building of a life science ecosystem with synergies between developments in biology and clinical care. Scotland has a competitive position, within the UK, and internationally, and has a strength in a demonstrably collaborative environment (Health Science Scotland, NRS Infrastructure, ISD and Health Board informatics), but significant investment is being made elsewhere that threatens Scotland’s competitive position. Notably, the recent £75m investment in the CPRD informatics portal that aims to contain clinical data for a population of 52 million, and £100m to sequence the genomes of cancer patients, developments restricted to building research capability in the NHS in England.
2.4 Investment in informatics aids patient care and promotes policy analysis. The investment in SCI DC (clinical database for diabetes care) has resulted in Scotland reporting as a nation less strokes and amputations.
2.5 Proportionate information governance in the NHS still presents a challenge. SHIP has produced a guidance document to aid proportionate decision making by data controllers.
2.6 The success of SHIP in forming part of the MRC co-ordinated UK network of eHIRCs has provided some momentum, but Scotland’s competitive advantage may be threatened by a relatively small population size, insufficiently optimised GP data, and initiatives are not currently coordinated with government, and reliant on ad hoc grant funding
2.7 A Health and Biomedical Research Strategy is proposed that includes informatics solutions for all chronic diseases, and for government to support a Scottish Health and Biomedical Informatics Research Centre to promote academic-NHS-industry collaboration.
2.8 HIRAG will report to CSO/eHealth Strategy Board by April 2014.
2.9 LR asked HIRAG members to respond to the paper and presentation.
2.10 HIRAG broadly supported and welcomed the ambitions expressed in the paper and presentation, and expressed the opinion that it would provide a focus for investment, industry engagement and development of a marketing strategy.
2.11 However, industry is confused by the prevailing landscape and uncertain how to access datasets held by the NHS, and it would be important for HIRAG to consider how engagement with industry should be managed, and to promote a model of engagement where benefit persists.
2.12 MB expressed the opinion that data linkage is currently not sufficiently optimised to maximise benefit. ISD have recently established the eDRIS portal that provides advice to researchers on data held by ISD and elsewhere that aims to address this point. MB offered to give a short presentation on eDRIS at a subsequent HIRAG meeting.
2.13 A gap in the strategy is the provision of funds to sequence the genomes of Scottish patients with chronic disease.
2.14 The strategy should incorporate analysis of datasets/information sources which are text-rich.
2.15 In response to the point made by AM that a relatively small population size may represent a competitive disadvantage, it was noted that Scotland may achieve comparative efficiencies by maximising on its collaborative environment and the potential for quicker decision making, and many clinically relevant questions do not require a population size of 52 million.
2.16 That the vision provides for activity that is both potentially collaborative and competitive was welcomed.
Actions
2.17 AM to arrange for the presentation to be circulated to HIRAG members.
2.18 MiB to circulate SHIP document: A blueprint for health records to HIRAG members
3. Mapping the landscape- relevant parallel developments HIRAG 2013/4
3.1 LR asked the meeting to comment on whether any key developments had been missed from the paper.
3.2 The reports: Building on our Inheritance (Human Genomics Strategy Group, January 2012) and Towards Precision Medicine, 2011, published by the National Research Council of the National Academies, USA should be included.
3.3 Information about ISD was a little outdated. MB would provide an update.
Action
3.4 MiB to update paper with additional information.
4. Terms of reference and way of working for HIRAG HIRAG 2013/5, HIRAG
2014/6 and HIRAG 2013/7
4.1 PC presented the paper HIRAG 2013/5 and asked the meeting to consider the terms of reference for HIRAG, and whether the three working-groups (Datasets, Infrastructure and Governance) were appropriate to drive the strategy and promote the establishment of the Health and Biomedical Informatics Research Centre.
4.2 Agreement by HIRAG over terms of reference.
4.3 Agreement to advance HIRAG business by email between formal meetings, where possible.
4.4 Agreement that Datasets working group should consider what datasets are available now, their robustness, their relevance to questions of interest, and what datasets are anticipated subject to adoption of new technologies. The creation of a datasets inventory should be explored. The feasibility of linking to household level, and the potential for mining text-rich data should be considered.
4.5 Agreement that the Governance group’s remit should be expanded to include industry engagement and development of a marketing strategy. This group will be convened as: Governance, engagement and communications group. This group should consider models for benefit sharing on the basis there is dormant value with a potential revenue stream for the NHS.
4.6 PC tabled HIRAG 2013/7 – proposed membership of the sub-groups. HIRAG members were invited to provide names of additional members.
4.7 The importance of having lay-representation on the sub-groups was acknowledged.
4.8 HIRAG supported in principle the creation of a Scottish Health and Biomedical Informatics Research Centre.
4.9 Agreement for minutes of HIRAG meetings and biographies of members to be posted on the CSO website.
Actions
4.10 CSO will expand draft strategy and ask subgroups to comment, and report to the HIRAG meeting on the 22 May.
4.11 CSO to convene sub-groups as soon practical with revised terms of reference. HIRAG members to comment on revised terms of reference and to provide recommendations on membership of subgroups.
4.12 CS would arrange for communication on HIRAG to be placed in eHealth newsletter.
4.13 MiB to circulate contact details of HIRAG members in the form of a mailing list.
Any other competent business
none
Dates of next and subsequent HIRAG meetings
Subsequent meetings will be held at St Andrews House, Edinburgh. The next meeting will be held on 22/05/2013, starting at 11:00. Subsequent meetings and provisional start times were agreed as follows:
03/07/2013 09:30
18/09/2013 11:00
06/11/2013 09:30