adds breast screening pathway section (#253)

---------

Co-authored-by: Ralph <[email protected]>
Co-authored-by: Frankie Roberto <[email protected]>

Author: 3 people

app/breast-screening-pathway.md

@@ -0,0 +1,11 @@
+---
+layout: collection
+title: Breast screening pathway
+description: Replacing legacy technology to build a clinically‑safe, integrated screening service that better supports breast screening office staff
+area: screening
+pagination:
+  data: collections.breast-screening-pathway
+  reverse: true
+  size: 50
+permalink: "breast-screening-pathway/{% if pagination.pageNumber > 0 %}page/{{ pagination.pageNumber + 1 }}{% endif %}/"
+---

app/breast-screening-pathway/2025/09/what-we-learned-about-breast-screening-data/index.md

@@ -0,0 +1,92 @@
+---
+title: What we learned about breast screening data
+description: Findings from the first round of interviews with over 30 breast screening offices (BSOs)
+date: 2025-09-30
+tags:
+  - breast screening
+  - NBSS
+---
+
+In the summer of 2025 we set up the breast screening pathway team. Our mission is to enable the creation of a modern, clinically safe and integrated breast screening service. 
+
+In practice, this means that a large proportion of our time will be spent on understanding the needs of breast screening offices (BSOs) and screening participants so we can replace the legacy National Breast Screening System (NBSS). NBSS has been effective for almost 3 decades, but increased patient expectations and evolving technology mean that it needs rebuilding to better deal with complexity. 
+
+Following the [announcement of NBSS replacement](https://design-history.prevention-services.nhs.uk/manage-breast-screening/2025/07/the-future-of-nbss/), we asked BSOs to contact us if they wanted to help shape the design of the new digital service. 
+
+We know that some BSOs are already working with [Team Manage](https://design-history.prevention-services.nhs.uk/manage-breast-screening/) and [Team Invite](https://design-history.prevention-services.nhs.uk/screening-invite/) on pilots that are parts of what will eventually become the new service. The [Reporting team](https://design-history.prevention-services.nhs.uk/breast-screening-reporting/) has already started to look at some of the data challenges. 
+
+In July we spoke to 32 of the 77 BSOs. Here are some of our learnings on breast screening data. 
+
+## Fragmented data
+
+Breast screening is run on many different systems and services. For example, BS-Select provides participant data, and picture archiving and communication system (PACS) provides mammogram images. NBSS should record breast screening data nationally but it's actually run as 75 local instances, which means that we don't have a single national view of breast screening data. 
+
+The electronic patient record (EPR) systems run by Trusts and GP IT systems further add to this complex landscape. 
+
+This means that if BSOs want to understand the whole person or the performance of their BSO, they have to assemble this data from many disjointed data sources. 
+
+### No clinical history
+
+Patients are in disbelief that the routine screening service doesn’t link to the symptomatic service. If someone is being treated for breast cancer, they will still receive invitations to routine screening - because invitations cannot be turned off in the IT systems. 
+
+Even when the two services - routine and symptomatic - are in the same building, they are sometimes managed separately. 
+
+BSOs cannot easily access previous mammograms that radiologists may need to decide if an image is normal or abnormal. They do not know if someone is being treated for cancer in the symptomatic pathway or if they have breast implants or a mastectomy. 
+
+### Access needs and communication preferences
+
+BSOs often do not know about participants’ access needs, such as whether they use a wheelchair. BSOs are surprised that despite being in general practice for 50 years, participant preferences and relevant clinical history are not shared with them. 
+
+They don't know if someone needs a plain English version because of low literacy or if they don't understand written English at all. 
+
+### Geographical boundaries
+
+Because each NBSS instance is run locally, BSOs don’t know if people move from one area to another. When Trusts merge or change boundaries, it often takes years to link up their IT systems, so that they can share information. One BSO told us that after numerous boundary changes, they could finally access the other Trust’s images on PACS, but not the patients' screening records. 
+
+### Plugging the gaps using paper and spreadsheets
+
+To plug the data gaps, staff feel like they have to be their best self, on their best day. They cross-reference everything multiple times, which usually involves counting the number of participants screened and making sure their results add up. 
+
+There are many manual failsafes in place to prevent incidents. As our clinical colleague Dr Jim Steel explained:
+
+
+> The process is different in each unit because it evolved to deal with incidents over the years. Adding failsafes - usually paper - is the easy default thing to do.
+
+
+The manual process causes BSOs to adopt even more manual workarounds, leading to a more complex process and a higher overhead. 
+
+### Compiling data manually
+
+Some BSOs have entire staff roles dedicated to looking for records across different systems or exchanging data with GP surgeries. At least 4 BSOs mentioned incidents caused by human error when GP surgeries did not have breast screening outcomes data electronically - these are still shared with GPs on paper. 
+
+Operational data that should just be available to BSOs takes months to prepare, as it needs to be manually wrangled. BSOs told us they are usually very busy in the autumn months when they compile their KC62 reports.
+
+BSOs are expected to understand uptake patterns, for example, by areas of deprivation or by GP surgery, and to form local partnerships to address these. This level of analysis is hard to do without accurate data and the tools. 
+
+## What does better service data look like?
+
+A modern and clinically safe breast screening service would allow clinical and admin staff to see the whole person, including:
+
+
+- relevant clinical history, such as whether they’ve had cancer before, surgery on their breast area, implants or any relevant symptoms
+- what happens to a person after they are screened, including whether they go on to have any further tests and the outcomes of these
+- communication preferences, which might include plain English, Braille or another language
+- a choice of where, when and how someone is screened, for example, if they need a wheelchair-accessible venue or need to schedule screening around work
+
+
+Beyond seeing the whole person, good service data would enable BSOs to know how they are doing (against historical data and national averages) in real time. They would know they can trust this data, resolve data conflicts and reallocate time savings to better patient care or to listening to their local populations and encouraging them to take up breast screening. 
+
+Accurate data would allow BSOs to measure how effective their interventions are and improve them over time. 
+
+
+## What's next?
+
+We've already started sharing these emerging findings with the different teams. One piece of feedback we received is that some data will be much harder to obtain.
+
+We could understand and map:
+
+- what data is essential to know or nice to have
+- what data is easy to find or hard
+
+
+We'll be working  on the new service to try and solve these problems.

app/breast-screening-pathway/breast-screening-pathway.json

@@ -0,0 +1,6 @@
+{
+  "layout": "post",
+  "eleventyNavigation": {
+    "parent": "Breast screening pathway"
+  }
+}

eleventy.config.js

@@ -83,6 +83,7 @@ export default function (eleventyConfig) {
     'screening',
     'bowel-screening',
     'breast-screening-reporting',
+    'breast-screening-pathway',
     'select',
     'diabetic-eye-screening',
     'explore-team',