Enclosure M

2015/16 WORK PROGRAMME - Approved by CSAG March 2015

Progress Report – March 2016

No. / LEAD / OBJECTIVES / TARGET FOR COMPLETION / Progress at
September 2015 / DATE
COMPLETED
STRATEGY
1 / Dir / Manage the outcome of the DH independent review of UKGTN and the implications on the organisational arrangements / Summer 2015 / Outcome of the review not yet published. Under discussion as part of item #.3 SECSU issued notice to NHS England on 24 Dec to stop hosting UKGTN in 2016/17 / Estimate 2016
2 / ALL / To manage the implications for UKGTN from the 100,000Genomes Project arising from the Government’s Life Science Strategy / Half Yearly reviews / Links with Genomic England established A collaborative project being undertaken to align core genes across the two organisations / As at March 2016
Ongoing
3 / Chair/Dir/
SDA/PHA / Participate and contribute to NHSE Review of Laboratories providing assurance for the transition of services provided by member laboratories / March 2016 / NHS England’s committee process for approval complete. ITT to be issued shortly once resource issues are clarified. / As at March 2016
Ongoing
4 / Dir / Actively participate in the Rare Disease Stakeholder Forum that oversees the implementation of the UK Rare Disease Strategy / Ongoing / Contribution to progress report to Minister’s complete / As at March 2016
Ongoing
5 / Dir/PHA/
CA / Work with NICE Diagnostic Programme Board on evaluation of diagnostic tests / Half Yearly reviews / NICE observer status on the GTEWG / As at March 2016
Ongoing
6 / ALL / Continue collaborative work with key stakeholders including Royal Collages, Health Education England, Genomics England, PHG Foundation, Patient Organisations, BSGM & International liaison. / Ongoing / Liaison continues / As at March 2016
Ongoing
7 / PM/C&I / Manage corporate communications e.g. website, newsletters, briefing reports & links with the body of genomic professions, patient support groups, media, internationally the four countries / Ongoing / Updates continue / As at March 2016
Ongoing
8 / ALL / Attend national & international meetings and conferences to influence policy / Half Yearly reviews / Reported in Project Team meetings / As at March 2016
Ongoing
GENETIC TEST EVALUATION WORKING GROUP
9 / ALL / Evaluation of Gene Dossiers / Ongoing
10 / SA / Review Gene Dossiers for Panel and Exome submissions on behalf of the Genetic Testing Evaluation Working Group to identify gaps in submissions / Oct 15
August 2015
Feb 2016 / Gene dossiers submitted 31.01.15. reviewed by August 2015. Gene dossiers submitted 31.07.15 July reviewed by Feb 2016 / August 2015
February 2016
11 / CA/PM/C&I/BA / Document agreed new tests the clinical implications to be recommended to the UKGTN Clinical & Scientific Advisory Group. / Sept 2015 March 2016 / New tests recommendations to September 2015 & March 2016 CSAG. / Sept 2015
March 2016
12 / Dir/PM / Inform relevant UK NHS administrations of CSAG decision and the implications on investment/efficiency/cost savings / April 2015
October 2015 / Impact of submissions noted above provided to the four nations
13 / C&I / Publish Directory and update web site / Dec 2015
March 2016
April 2015 / Version 12 April 2015 available on the website / April 2015
14 / CA/SPL/
PM / Complete audits on actual activity and costs compared to expected activity and costs for approved gene dossiers after 2years’ service. / August 2015
January 2016 / This has been deferred to prioritise#30 below the Guide to centres with specialised expertise. / Deferred to 2016/17
15 / PHA/CA/C&I / Develop Testing Criteria for cancer sub panels recommended to the September 2014 CSAG. / March 2016 / Cancer Genetics Group approached for workshop. / Deferred to 2016/17
16 / C&I/BA / Update the web site and the relevant supporting publications / Ongoing / Some minor delays due to staff shortages
LABORATORY MEMBERSHIP AND AUDIT WORKING GROUP
17 / PHA/PM / Work with HSCIC to request data for the 2012/2013 2013/14 review of genetic testing rates & analyse and report. / March 2016 / NHSE Directions signed off by HSCIC, July 2015 and by NHSE.Burden Assessment completed.
Information Standard Notice published in August.
HSCIC Data Provision Notice to be published shortly. Returns to take account of ITT timetable
18 / PHA/PM / Work with HSCIC to request data for the 2014/15 review of genetic testing rates & analyse and report. / March 2016
19 / SA/PM / In collaboration with the ACGS, audit the use of GenUs and make amendments to the system as required, monitoring consistency & application / Ongoing / Reviewed with ACGS in February / March 2016
20 / SA/PM / Collect and measure GenUs activity and produce an annual report on benchmarked activity / Sept Dec 2015 / Request for labs to complete annual returns by 30 September sent out August 2015. / March 2016
No published due to commercial sensitivity
21 / SA/PM / Ensure that laboratory members meet required quality standardsfor UKGTN services and develop appropriate documentation and processes. / Sept Dec2015 / As per item #20. / Moving to ISO 15189 standard
Updating lab membership forms for process and criteria
22 / SA / Drive forward, in collaboration with ACGS,standards/UKGTN developments holding relevant meetings. / Ongoing / ACGS meeting attended in June 15 re NGS, Rare Disease and Data sharing. Feb 16 Quality Sub- committee attended
23 / SPL/PM / Review test performance to assure the quality of the results of NGS panel tests 1 year after service / Dec 2015 / Laboratory Membership & Audit Working Group signed off process. / Deferred to 2016/17
RARE DISEASE SERVICE IMPROVEMENT WORKING GROUP
24 / PHA/PM / Explore variations in the most recent Genetic testing rates report and recommend actions / March 2016 / Data collection N/A / Deferred to 2016/17
25 / Dir/PM / Engage with NHSE commissioningand work arising from specialised services Clinical Reference Groups. / Ongoing / Input continues to all CRG meetings / Ongoing
26 / CA/PHA/PM / Hold a Cardiology workshop to promote the interface of gene testing within the care pathway with relevant professional & patient groups / Dec2015 / UKGTN sessions at BCS annual conference. Report published 24 September 2015. / Completed Sep 15
27 / PHA/CA/PM / Develop clinical outcomes that are measurable for wider consultation in liaison professional bodies and patient organisations / March 2016 / Initial discussions have taken place with HSCIC. Diagnostic Odyssey draft proposal completed / Diagnostic Odyssey being taken forward through the Rare Disease Forum
28 / PHA/CA/PM / Develop a process to establish testing criteria for genetic tests without testing criteria / March 2016
29 / ALL / Advise on aspects of the UK Rare Disease Implementation Plan / Ongoing / Reviewed DH submission #4 and amendments included in final version / Report to Ministers being launched Rare Disease Day in Feb 16
30 / PM/SPL / Review and Update the UKGTN Guide to centres with specialist expertise for rare genetic disorders and align specialties with the website / Ongoing / Draft produced 24.09.15. / Completed Feb 16
31 / SDA / Report on the trends for Healthcare Outcomes for the new tests recommended to commissioners since 2013 / March 2016 / Being produced for March 16 CSAG / March 16

Abbreviations:

Chair(UKGTN Chair)

Dir(UKGTN Director)

CA(Clinical Expert Advisor)

PHA(Public Health Expert Advisor)

SA(Scientific Expert Advisor)

SDA(Scientific Development Advisor)

SPL(Scientific Project Lead)

PM(Programme Manager)

C&I(CorporateInformation Manager)

BA(Business Administrator)

1

Completed
Work has started
Work is yet to commence or past target date
Ongoing items that have no end date in year