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CHAPTER 10: INFORMATION TECHNOLOGY AND MANAGEMENT SUPPORT FOR GENETICS IN SCOTLAND
A recurring theme throughout the Report so far has been the pressing need for the considerable development of IT&M support for both NHS genetic services, and genetic research in Scotland and the development of mechanisms which allow closer collaboration between the two.
Information Technology and Management ( IT&M) support is required for coordination of genetics services.
In chapter 6 the group conclude that there would be a gain in moving to national coordination and management of clinical genetics, cytogenetics and molecular genetic diagnostic laboratory services across Scotland. This would follow the successful model of the Scottish Molecular Genetics Consortium. However such a strategy will " necessitate common IT platforms and information sets and the development of appropriate IT links" and the group recommend to the Scottish Executive that these be developed. It will be important that attention is paid not only to the technology component but also to agreement of what data requires to be gathered and shared.
Providing IT&M to allow coordination of services is an extension of current strategy. Pre-natal and newborn screening in the West of Scotland are already co-located and a new state of the art, common IT platform installed in 2005 will allow closer links that will underpin the further development of both screening services. These links will be extended across Scotland as the new IT platform is rolled out to the remaining three pregnancy screening laboratories in the other Centres.
Information Technology and Management ( IT&M) support is required for clinical research and development of novel therapeutics.
In chapter 10 the group recommend better integration of clinical genetic services with the genetic research community and life sciences industry. Scotland already supports a research capability allowing IT tool developments for effective and secure data handling through the National e-Science Centre. A nascent eScience for eHealth strand to this work may address the need for radical developments in information management for the NHS, and for medical researchers, in Scotland. This group has found through our consultations that this need is well established, urgent and of particular importance in genetics-related activities. The exchange of data among clinical and research communities may well be an area where Scottish expertise could profitably seek to lead UK progress.
In summary, the appropriateness of the IT&M infrastructure and provision across Scotland, to enable reciprocal access of scientists to the clinical data, and clinicians to research data requires serious attention. A system is required that links genetics laboratories and research institutes with clinical centres. Genetic data should also be made accessible, in a need-to-know basis, to other clinical specialties and to primary healthcare. In short, all the relevant bodies should be able to readily interface with the genetic and clinical data they require to do their job, but we must also address important issues of confidentiality and privacy. Since other parts of the UK are addressing similar issues, cognisance should be taken of IT&M systems being developed elsewhere in the UK.
An eHealth strategy for Scotland
A wide variety of disparate computer systems, many with unique datasets, are installed at present across NHS Scotland and this raises many issues of compatibility and inter-operability. The presence of fragmented records precludes the delivery of joined up care and hampers quality improvement activities, service management and planning. An eHealth strategy has therefore been crafted to guide the development of IT&M across NHS Scotland. Option appraisal of the best delivery mechanism continues and an implementation programme is currently being developed.
The vision of the eHealth strategy is to develop One Patient, One Record. The strategy sets out a number of principles in support of this, including:
- Individual single patient records should be jointly managed by patients and professional NHS staff, with in-built security of access governed by patient consent.
- Endeavours will be clinically led in partnership with IT professionals and senior management to achieve improvements in patient care.
- A universal unique patient identifier (Community Health Index - CHI) will be used in all NHS Scotland systems.
- Technical and information standards in health systems will support inter-agency working with local authority and other caring agencies.
- Projects/procurements under way in NHS Scotland which are not consistent with the strategy principles, plans and timescales should be reviewed in conjunction with SEHD to establish whether they should continue.
- A big bang migration to a completely new single IT system poses a high risk. This will be avoided by accelerating building the single record through linkage of existing systems and filling gaps among them. To aid this a national technical architecture has been developed.
The consequence of this eHealth strategy for the provision of IT&M support for genetics is to mandate an approach in common with other clinical specialties, wherever this is possible. Further work is required to establish how the eHealth strategy approach can support the specific needs of genetics services.
The Group are aware that a DH commissioned project has recently compiled an IT system output based specification ( OBS) to cover the needs of NHS genetic services (laboratory and clinical) which was well received in discussion at a stakeholders workshop. It was concluded that the OBS showed that the systems needs of the clinical genetics service were very similar to other clinical services, with the exception of two important issues: family data and linkages and consent and confidentiality. Further work on these issues as they affect the IT needs of clinical genetics is to be taken forward in England and the results could usefully inform the debate in Scotland.
In order to take forward the required IT&M developments that have been identified, the Review Group recommend that the SEHD, in collaboration with ISD should establish a project to:
- Consult with potential users and draw up a description of the functions that will be required of IT&M systems to support the development of genetics services and research outlined in this report. The description should include both the technology and dataset requirements for:
- Molecular genetic and cytogenetic laboratory test management, reporting, research and development
- Operation of clinical genetics services, including scheduling of clinics and call-recall, support for intra-family linkages and the generation of summaries for non-genetics care services
- Support of information exchange among clinicians and researchers, including bioinformatics tools and access to databases where health history and genetic data are linked.
- Related work in England for Connecting for Health should be used to aid development of this description.
- Examine how the approach outlined in the e-Health strategy can be tailored to deliver these functions. This analysis should explore to what extent issues of confidentiality, consent and security, and of handling family relationships, differ in genetics from other clinical specialities.
- Assuming that, in the interests of cost efficiency, maximum use will be made of facilities funded within the context of GHI and of the joined up common systems to be made available through the e-Health strategy, assess the additional resources which will be required to fund the specific needs of the genetic services, which will be above and beyond this provision.
The project should report to both the e-Health programme board, chaired by the Chief Executive of SEHD - (on aspects to support genetics services), and to the Scottish Genetics Research Network (on aspects of interaction with the research and life sciences communities).
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