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Systemic Anti-Cancer Therapy (SACT) Data Newsletter
National Disease Registration Service | September 2023
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Welcome to the SACT data newsletter
We are pleased to share news from the SACT data team, including recent publications and upcoming events. Please share this newsletter with networks and colleagues and send your comments and suggestions for future newsletters to the SACT Helpdesk ndrs.datasets@nhs.net. You can subscribe to the newsletter here.
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This issue includes updates on:
The new SACT data set community, CancerStats2 reports, SACT data webinars, 30-day mortality post-SACT outputs, The Cancer Drugs Fund, SACT v3 data set review, SACT Helpdesk Team updates, and NDRS website updates.
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The new SACT data set community has launched
We are delighted to invite you to join the new SACT data set community on FutureNHS. Please note this replaces the previous community on KnowledgeHub and is only available to NHS staff working within an NHS trust in England.
The community offers a space for members to make connections with other NHS trusts and access important guidance and updates from the SACT data set team. Whether you work as a cancer manager, pharmacist, nurse, clinician, analyst or any other SACT data supporting role within your trust, this is a great network to be part of.
Once registered, you will have access to the community forum which provides a space to ask questions to other members and view or join discussions. You can also access important updates, information, webinar recordings and slide decks. Keep an eye out for upcoming events and the SACT data set team's 'What Happened This Month' updates on the community homepage.
To request an invitation, please complete this short online form.
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We have now completed the initial engagement stage of the SACT v3 data set review where we collected feedback on the current data set and potential changes for future versions. Thank you to everyone who submitted feedback – the form has now closed. We had an encouragingly high volume of responses from a range of stakeholders, including clinicians, pharmacists, pharmaceutical companies, and patient groups culminating in over 100 suggestions for changes, including requests for new SACT data set items.
The graph below summarises the types of responses received:
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Changes to the Outcomes and Regimens sections were popular topics. We will now process all suggestions through our phased review process with the aim to create a new alpha version of the data set in early 2024 ahead of the formal consultation stage of the review. | |
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CancerStats2 update
CancerStats2 (CS2) is available to all NHS staff on the Health and Social Care Network (HSCN) with an account. Users have the ability to adapt the reports to show detailed information on all SACT activity across NHS trusts in England.
Work is ongoing to provide further improved versions of the SACT reports on CS2 to allow users to navigate the reports and access the information they need more easily. We have a range of reports available which include annual summary dashboards where users can access the high-level data, and complementary reports which display more detailed information.
New report releases
The analysis and business intelligence teams have produced several new reports during the last quarter:
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SACT Time to First Treatment (TTFT) dashboard – presents the time taken for patients to be treated with SACT drugs brought into routine commissioning, including those coming via the Cancer Drugs Fund. It aims to identify variation in uptake to support the understanding, and then improvement, in equitable access of new SACT drugs across England. Data is available by trust and cancer alliance, alongside a summary measure for England.
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SACT Data Quality and Completeness (DQDC) dashboard - aims to help trusts to identify issues with data quality and completeness and support improvements in SACT data reporting. Data quality is shown alongside completeness to highlight areas where data completeness may be high but data quality is low. This dashboard will help the SACT data set team and NHS trusts to ensure the data submitted is as complete and accurate as possible.
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SACT Activity dashboard – contains detailed data on all SACT activity submitted by NHS trusts in England. Data is available at NHS trust, Cancer Alliance, Integrated Care System, and all England level, and includes patient demographics, tumour groupings and drug treatment activity.
To log in or register for an account, visit the CancerStats2 platform.
Please note – for optimum functionality on CancerStats2, we encourage you to use Mozilla Firefox, Google Chrome or Microsoft Edge when accessing the reports.
Visit the 'SACT data set events' section below to register for our upcoming CancerStats2 webinar in October 2023.
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SACT data set events
Members of the SACT data set team recently hosted a public webinar to provide detailed information on our 30-day mortality post-SACT data feeds. Over 130 stakeholders registered to attend the session on Thursday 14 September with over 80 attendees on the day.
If you were not able to join, you can access the recording and slides on the community. If you work outside of an NHS trust, please email the helpdesk to request access to the webinar resources.
Towards the end of the session, we shared details of our upcoming workshop to discuss the 30-day mortality post-SACT outputs in more detail. This is due to take place on Thursday 16 November 2023 11am to 12:30pm. If you are interested to find out more, please email the helpdesk. We ask that attendees have used either the Rapid Data Review (RDR) and/or the Case-Mix Adjusted Rates (CMAR) report and are happy to discuss their experiences during the session.
Upcoming CancerStats2 webinar: 'How to get the most out of the SACT data reports on CancerStats2'
The Team’s next webinar will be on Wednesday 25 October 12:00 – 12:50 pm and will cover the range of SACT reports available to registered users on CancerStats2 (CS2), including the Time to First Treatment, Data Completeness and Quality, and SACT Activity dashboards, all of which launched over the last quarter.
Please note, due to the content included, this webinar is open to NHS staff only.
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30-day mortality post-SACT outputs | |
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Case-mix adjusted rates (CMAR) report
We informed you in our June newsletter that the new 30-day mortality post-SACT case-mix adjusted rates (CMAR) report is now openly accessible on the NDRS website. This report considers patients diagnosed with breast cancer who received SACT in 2021 and was the first release since February 2022 when we paused for methodological review.
The next report will be shared with NHS trusts in early January 2024 ahead of the public release in February, and will include the following two cancer types:
- Prostate cancer patients receiving SACT during the period of 2020-2022
- Renal cell carcinoma patients receiving SACT during the period of 2019-2022
We hope this continues to be a useful tool and creates an opportunity for NHS trusts to review their own practice and explore any reasons for variation.
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The Rapid Data Review (RDR)
In July, we shared the latest Rapid Data Review (RDR) release which included patients who were treated between January and March 2023 and who died within 30 days of receiving systemic anti-cancer therapy (SACT) with all NHS trusts who requested it. Ahead of each release, we contact all RDR contacts from each NHS trust to ask them to confirm they would like to receive the next quarter. As a result, the July release was sent to contacts from 75 NHS trusts.
The next release will be sent in early November and will cover activity from April to June 2023. We will contact all trusts ahead of this release to confirm who would like to receive it. Please note, this is part of our GDPR process to ensure data is being shared with the correct contacts.
If you do not receive the RDR and would like to, or if you have any questions, please contact the Helpdesk.
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To find out more about the two outputs, you can access the webinar recordings on the SACT data set community on FutureNHS. Request an invitation to the community here.
Please continue to share feedback on both outputs; we would be particularly interested to hear how they have impacted internal NHS trust reviews and collect any best practice. Please send any thoughts or feedback to ndrs.datasets@nhs.net.
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The National Disease Registration Service (NDRS) website and bitesize series
You can use the NDRS website to discover how NDRS sources, records and analyses data on people with cancer, rare diseases and congenital anomalies.
Website resources include information on data sets, data tools, publications and data collection processes within the service. The NDRS strategic plan for 2023-24 which sets our vision, core business and strategic priorities over the next 12 months is also available.
You can find out more about the SACT data set and a range of other NDRS data sets and products through the recently launched NDRS bitesize series.
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SACT Time to First Treatment (TTFT) report
Also available on the NDRS website is the new public facing Time to First Treatment (TTFT) dashboard. The dashboard launched in August 2023 and reports the time taken for patients to be treated with SACT drugs once they been approved by the National Institute of Health and Care Excellence (NICE) for routine commissioning in the NHS. The dashboard provides a summary measure for England and is updated regularly to include newly approved drugs and the latest SACT data.
This report has been developed with clinical guidance from the SACT Clinical Leads Group (CLG).
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The Cancer Drugs Fund
The SACT team have recently completed two final reports:
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Tisagenlecleucel - a CAR-T therapy used to treat relapsed or refractory Philadelphia negative and positive B-cell ALL in people aged 25 years and under.
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Selpercatinib for treating advanced thyroid cancer with RET alterations.
The reports have been shared with NICE who are due to re-appraise these indications mid-2024.
Following the NICE re-appraisal of CDF drugs, the SACT team have had a CDF report published for Olaparib for maintenance treatment of recurrent, platinum-sensitive ovarian, fallopian tube and peritoneal cancer, this treatment was approved for routine use in the NHS. This report shows how the SACT dataset provides essential real-world evidence to inform committee decisions.
The September CDF queries were sent out to all applicable NHS trusts week beginning 11 September. If you have received an email from nhsdigital.ndrs.cdf@nhs.net, please respond and provide the missing data by the deadline of 28 September 2023. Requests for missing data for Selercatinib treatments for non-small cell lung cancer (RET fusion positive) which entered the CDF on 25 November 2021 were included in the queries this month. CDF data collection for this drug is now ending, so please ensure you make a particular effort to return the requested information so the data can be used within the final SACT report.
If you have any questions or concerns regarding your monthly CDF returns, please contact nhsdigital.ndrs.cdf@nhs.net
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The list of treatments currently funded by the CDF can be found on the NHSE website via the link below. | | |
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SACT data submissions and escalations - Helpdesk Team update
Thanks to all NHS trusts who continue to upload and submit their trust’s SACT activity each month. For August, we noticed a drop in submissions where only 80% of NHS trusts submitted their May data file before the deadline. Please reach out to the team if you have concerns or need support.
We continue to monitor uploads and submissions and initiate the formal escalation process for those that are behind. We currently have five NHS trusts who are in stage 1 escalation, with several others who we are monitoring. Please ensure you meet deadlines where possible and contact the Helpdesk Team if you have any concerns.
You can access the SACT data submission calendar and SACT escalation process on the NDRS website.
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