NGRL Manchester has commenced a project with UKGTN and the Department of Health Informatics Directorate to develop a draft NHS information standard for genetic medicine, which will define the content and representation of data in IT systems used in this field.

The project consists of two parts; the first will draw together existing data standard sets, such as those developed for genetics laboratory information management systems (to support STARLIMS procurement), the Do Once and Share project and Commissioning frameworks, and updating these. The second part of the project will review IT systems (incorporating patient administration, clinical and laboratory systems) across genetics centres and identify requirements for data exchange between these and/or other health IT systems, and the standardisation required for this. Clinical coding will not be included in this project as work on this area is being undertaken separately.

Specialist consultants have been appointed to carry out the work required to complete the project; Dr Eunice Bamgboye from Innovative Consultancy Solutions (ICS) will work on the first part of the project, and a team led by Dr Ali Anjomshoaa from AIM Technology Partnership Ltd will focus on the second part.
 

The project is now underway and is due to be completed in May. As a part of the research required to complete the two parts of the project, the consultants will contact a number of genetics staff to conduct interviews and collect information. NGRL Manchester, UKGTN and the Department of Health Informatics Directorate are grateful for the cooperation and participation of the UK genetic testing laboratories in this process.
 

The project outputs will undergo external peer review by the IT steering group, the UKGTN Lab Membership and Audit Group and the project Board. Final outputs will be reported to the UKGTN Clinical and Scientific Advisory Group and the HGSG Bioinformatics Group.
 

For further information about this project, or if there is specific information that you would like to contribute, please contact Andrew Devereau, Director, NGRL Manchester (andrew.devereau@cmft.nhs.uk or 0161 276 8703).