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context for the discovery and alpha phases of the HPV Self-Sampling service +date: 2025-03-31 +tags: + - cervical screening + - hpv self sampling + - nhs ambitions +--- +This post explains the background and context for HPV Self-Sampling and the ambitions and vision the NHS has for cervical screening uptake and inclusion of under-served groups. + +## Project background + +### NHS cervical screening ambitions +Cervical cancer is a preventable disease, yet it remains a significant public health issue in the UK. Uptake rates have declined over recent years, with coverage in England falling from 76% in 2010/2011 to 70% in 2020/2021, particularly among the underrepresented groups. [BMJ Open](https://bmjopen.bmj.com/content/bmjopen/13/6/e068940.full.pdf) + +Nearly all cervical cancers are caused by an infection with certain types of Human Papillomavirus (HPV). [NHS A-Z](https://www.nhs.uk/conditions/cervical-cancer/causes/) + +**Risk:** Low screening uptake poses a risk of increased cervical cancer incidence and mortality. [STI BMJ](https://sti.bmj.com/content/96/1/20) + +
+ +### NHS launch of HPV self-sampling to underscreened women and people with a cervix +Approximately 3 in 10 people do not take up the offer of screening. Barriers like pain, embarrassment and inconvenience can put people off cervical screening. Individuals who rarely or never attend their screening appointment are described as ‘under-screened’ and are at higher risk of undetected cervical abnormalities and associated disease.​ + +National and international evidence now suggests that offering the option of HPV self-sampling could help overcome some of these barriers among the under-screened group, leading to improved participation in screening and preventing more cervical cancer deaths.​ + +Based on the guidance from the UK National Screening Committee, the cervical screening programme will launch a national roll out of an HPV self-sampling offer to under-screened participants across England. To manage the implementation of this service, HPV self-sampling will be offered based on a risk based roll out model:​​ + +- **Initial priority:** Those who have never responded to an invite to cervical screening ​ + +- **Second priority:** Those who have failed to take up their 2 most recent screening invites​ + +- **Following cohorts:** Will be broken down by riskiest age band to target those at highest risk first e.g. approaching the end of the age covered by the screening process​ + +Once these priority cohorts have been offered the service, it will be rolled out to any other non-responders e.g. new non responders to their most recent screening invite. + +[The UK National Screening Committee announcement for HPV self-sampling](https://nationalscreening.blog.gov.uk/2024/12/04/uk-nsc-consults-on-offering-hpv-self-sampling-option-to-under-screened-people-in-cervical-screening-programme/) + +**NHS Ambitions** + +1. [Ambition to Eliminate Cervical Cancer by 2040](https://www.england.nhs.uk/2023/11/nhs-sets-ambition-to-eliminate-cervical-cancer-by-2040/): This goal will be achieved through a combination of increasing HPV vaccination uptake and enhancing cervical screening programs.​ +2. [Improving Screening Uptake](https://www.gov.uk/government/news/new-national-cervical-screening-campaign-launches-as-nearly-1-in-3-dont-take-up-screening-offer): Efforts include sending more frequent reminders, offering flexible appointment options, and promoting awareness through campaigns like Cervical Screening Awareness Week. Special attention is given to reaching women who missed previous invitations. +3. [Targeted Outreach and Community Engagement](https://www.gov.uk/government/news/health-secretary-announces-new-womens-health-priorities-for-2024): According to new women’s health priorities 2024, there will be focus on reducing disparities in screening uptake by targeting outreach efforts to specific groups, such as ethnic minorities and older women.​ +4. [Introduction to Self-Sampling](https://www.england.nhs.uk/2021/02/nhs-gives-women-hpv-home-testing-kits-to-cut-cancer-deaths/): [YouScreen](https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(24)00251-7/fulltext) piloting self-sampling as a new method to increase screening uptake among women who might be reluctant to attend in-person appointments due to cultural, personal, or logistical reasons.​ +5. [Reducing Health Inequalities](https://www.gov.uk/government/news/health-secretary-announces-new-womens-health-priorities-for-2024): This involves better data collection to identify and reach underserved populations, offering more flexible services, and using digital tools like the NHS App to make it easier for individuals to book and manage their appointments. ​ +6. [Innovation and Early Diagnosis](https://www.gov.uk/government/news/early-cancer-detection-and-survival-to-be-prioritised-by-nhs): Investing in new technologies and innovative approaches to enhance early cancer diagnosis. [The Faster Diagnosis Standard(FDS)](https://www.england.nhs.uk/cancer/faster-diagnosis/) aims to provide a diagnosis within 28 days for patients referred for suspected cancer, which is crucial for improving outcomes and survival rates.​ + + +### Vision and scope for HPV self-sampling Digital Screening team ​ + +> A trusted, reliable and accessible service which allows eligible individuals to order an HPV test, self-sample, return their kit and receive a result and the next action to take/expect.​ + +The HPV Self-sampling Digital Screening Team is responsible to accurately identify non-responders within England and invite them to order an HPV self-sample kit. ​ + +- We must be able to **verify** they are eligible ​ + +- Offer them a **trusted** method for sharing their personal information to get the test kit delivered to them.​ + +- We must be able to **record their result** in the existing system of record and **share the result** with the participant.​​ + +We may contribute to and have dependencies on the wider HPV self-sampling operational and non-digital considerations, but we are not responsible for delivering the operational and wider service design. This includes: ​ + +- The operational design of service (e.g., kit provider specification, lab requirements, CSMS integrations and reporting) ​ + +- Wider HPV self-sampling awareness and guidance strategies (e.g., screening campaigns, NHS UK content, GOV.UK content) ​ \ No newline at end of file diff --git a/app/posts/hpv-self-sampling/2025/03/2025-03-31-hpv-self-sampling-work-so-far.md b/app/posts/hpv-self-sampling/2025/03/2025-03-31-hpv-self-sampling-work-so-far.md new file mode 100644 index 000000000..ad5215141 --- /dev/null +++ b/app/posts/hpv-self-sampling/2025/03/2025-03-31-hpv-self-sampling-work-so-far.md @@ -0,0 +1,225 @@ +--- +title: Design work so far +description: This is a recap of what our design team has done in Q3/Q4 2024-25. +date: 2025-03-31 +tags: + - cervical screening + - hpv self sampling + - research + - workshops +--- + +This post summarises what the HPV Self-Sampling service is about, going into some detail about the design and research work that has been done between November 2024 - March 2025. Artefacts from Mural, Sharepoint or Figma that are mentioned will be linked. + +## Overview of HPV Self-Sampling + +### The difference between HPV Self-Sampling and Cervical Screening + +[Cervical screening](https://www.nhs.uk/conditions/cervical-screening/) detects types of human papillomavirus (HPV) which can cause cells in the cervix to become abnormal. Removing these abnormal cells can prevent cervical cancer developing.​ + +Cervical screening is where a clinician collects a sample of **cervical cells**, which is sent to the lab and first tested for HPV. ​ + +- If HPV is **not found**, no further tests are conducted on the sample, and the participant is invited for cervical screening in 3-5 years time.​ + +- If HPV is **found**, the cervical sample will be tested for abnormal cells.​ + +![A diagram showing the flow of the HPV self-sampling service in the context of cervical screening](diagramhpvss.png) + +In our service design, HPV self-sampling is an **at-home test** to check for the presence of HPV. The participant collects a sample of **vaginal cells**, via a swab and it is sent for analysis of HPV. ​It is not a requirement for the participant to try and reach their cervix. + +- If HPV is **not found**, no further tests are conducted on the sample, and the participant is invited for cervical screening in 3-years time. ​ + +- If HPV is **found**, the participant will be advised to have a traditional cervical screening, where a clinician will collect a sample of cervical cells to be retested for HPV and abnormal cells ​ + +HPV self-sampling is **not an alternative** to cervical screening and a clinician taken sample is prefered. However, self-sampling provides an indication of whether the participant is at higher risk of developing abnormal cells which may encourage reluctant participants to attend. ​ + +### YouScreen pilot overview + +> *"YouScreen demonstrated that for GPs, being able to offer self-sampling to under-screened women when they attend for other appointments is a pragmatic way to deliver cervical screening to those at risk"* - [King's College London](https://www.kcl.ac.uk/news/self-sampling-hpv-kits-could-screen-an-extra-million-people-for-cervical-cancer) + +After the success of the YouScreen pilot in London that enabled people to complete HPV self-testing at home, the NHS wants to scale this service nationally and initially use it to address some of the barriers that non-responders have about cervical screening.​ + +- The YouScreen trial offered 31,000 HPV self-sampling kits in 133 GP practices across North London from Jan 2021- Nov 2021 + +- These were offered to women with a cervix, between 25-64 who were at least 6 months overdue for their screening + +- Those invited YouScreen kits were offered in two different ways: direct posting of kits or opportunistically at GP practice​ + +- Self-samples were returned from:​ + - 65.5% (6061/9248) who accepted an opportunistically offered kit ​ + - 12.9% (2777/ 17,604) directly-mailed kits​ + +- The self-sampling intervention resulted in a 22% increase in non-attenders screened per month​ + +​ +NHS London team are due to restart this pilot in summer 2025, trialing the opportunistic offering with a larger cohort across London practices. Their kit will be used in a clinical setting. + +[The research findings from the YouScreen Nov 2021 Pilot](https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(24)00251-7/fulltext) + + + +### What our team will explore during Alpha + +The below demonstrates the proposed high-level service we will be exploring throughout alpha, and to be tested during private beta. This is a simplified happy path and does not depict every communication channel or reminder message, as well as unhappy scenarios. + +![Simplified service journey](simplifiedjourney.png) + +[The detailed service blueprint can be found here](https://app.mural.co/t/nhsdigital8118/m/nhsdigital8118/1734623454017/b17b3e3374bdaf6356393225ff24d1c427d58587) +​ + +### Timelines + +This is subject to change based on UKNSC decisions and dependencies on procurement of the kit provier, lab logistics and technical development. + +![Slide screenshot of timelines for the HPV SS project](timelines.png) + +​ +## Service design and research activities so far +Time period: November 2024 - March 2025 + +**Key workshops ran:** + +- Internal service design workshop (November 2024)​ - [8th November Workshop write-up](https://nhs.sharepoint.com/:p:/r/sites/X26_SSD/screen/PMO/CSMS/02.%20Delivery/Product/HPV%20Self-Sampling%20(CRM)/Workshops/Workshop%20write-up_8th%20November%202024.pptx?d=we1d04815bc9b45f899c553e72584ed49&csf=1&web=1&e=ZDRgVy) +- Defining the service design phases with V&S stakeholders (December 2024)​ - [3rd December Workshop write-up](https://nhs.sharepoint.com/:p:/r/sites/X26_SSD/screen/PMO/CSMS/02.%20Delivery/Product/HPV%20Self-Sampling%20(CRM)/Workshops/Workshop%20write-up_3rd%20December%202024.pptx?d=wae1615b943d34466bdea5b06fad56f16&csf=1&web=1&e=V8JTMi) +- Notifications and messaging workshop (December 2024)​ - [4th December Workshop write-up](https://nhs.sharepoint.com/:p:/r/sites/X26_SSD/screen/PMO/CSMS/02.%20Delivery/Product/HPV%20Self-Sampling%20(CRM)/Workshops/Workshop%20write-up_4th%20December%202024.pptx?d=w08e53c9bf6784f17a7154f33d8f121b7&csf=1&web=1&e=v9yRL4) +- Service design x technical considerations working sessions​ +- Clinical considerations with NHS App and Screening clinical teams (January 2025)​ - [21st Jan Workshop write-up](https://nhs.sharepoint.com/:p:/r/sites/X26_SSD/screen/PMO/CSMS/02.%20Delivery/Product/HPV%20Self-Sampling%20(CRM)/Workshops/Workshop%20write-up_21st%20Jan%202025.pptx?d=w9091d243f98446b49cb530a3e4774e9c&csf=1&web=1&e=lh1gif) +- Content strategy workshop with V&S stakeholders and NHS App + NHS.UK (29th Jan)​ - [29th Jan Workshop write-up](https://nhs.sharepoint.com/:p:/r/sites/X26_SSD/screen/PMO/CSMS/02.%20Delivery/Product/HPV%20Self-Sampling%20(CRM)/Workshops/Workshop%20write-up_Morning%2029th%20Jan%202025.pptx?d=w68743dfe1c1547a8a88ae85b357972e1&csf=1&web=1&e=GqOu0c) +- London Opportunistic Offering team collaboration session (29th Jan) + +**Key artefacts created so far:** + +- [Extensive Secondary research pack​](https://nhs-my.sharepoint.com/:p:/g/personal/ellie_milne1_nhs_net/EWd8-yJn19ZKhKYq1ihXPOsB7YT4UP0lrjMktQjptOzmdA?e=XpMNOU) +- [Market research and benchmarking​](https://app.mural.co/t/nhsdigital8118/m/nhsdigital8118/1729853470288/f816d7d07eb2c0a04154b7add69c6ce785915d3b?sender=u6c791d975632f39bdf923204) +- [User demographics matrix​](https://nhsd-confluence.digital.nhs.uk/x/YQTENw) +- [Hypotheses and risky assumptions documentation​](https://nhsd-confluence.digital.nhs.uk/x/BnUXNw) +- [WIP Service blueprints​](https://app.mural.co/t/nhsdigital8118/m/nhsdigital8118/1734623454017/b17b3e3374bdaf6356393225ff24d1c427d58587) +- Experience Based Maps with OKRs​ +- Process flows and high-level user flows​ +- Unhappy paths mapping and prioritisation +- [COM-B model for behavioural change strategy](https://nhs.sharepoint.com/:p:/s/X26_SSD/screen/EdfCMcinMERBkczdSpj0FTgBByudTI-uD00vlHWnrCDdTA?e=9VJ2kw) + +**Research done so far:** + +- 1 Qualtrics surveys sent out to NHS App panel + - Aim: To understand user needs surrounding HPV self-sampling and how personalisation within the NHS App, could be used to drive uptake and awareness of HPV self-sampling, alongside traditional cervical screening. + - 240 participant responses + - [October 2024 survey deck](https://nhs.sharepoint.com/:p:/s/CitizenExperience1/EcE9M0hdx0BJnQ9wkNVKhq8BebKIh__rrNPEhZna3EYdhg?e=uLk9oa) +- 1 Qualtrics survey sent out to Lived Experience panel and Citizens Panel + - Aim: To gather more information on how much users understand about HPV in the context of cervical screening, preferences for receiving inivtations and messages about the service and explore user motivations + - 391 participant responses + - [January 2025 survey deck](https://nhs.sharepoint.com/:p:/s/CitizenExperience1/EWrRRI9IfmZMmurKrf0K6LkBCO0mo6aEZgfOvUMuXu08Qg?e=5nYQhc) +- 1 unmoderated research study with 32 participants +- 1 pop-up research study with 27 participants across 5 locations in Leeds + +### What we have learned so far and design decisions + +![](Slide18.jpg) +![](Slide19.jpg) +![](Slide20.jpg) +![](Slide21.jpg) +![](Slide22.jpg) +![](Slide23.jpg) +![](Slide24.jpg) + +#### First iteration of design + +In the first iteration, we explored: +- Different ways we can write the invitation to the service, looking at the barriers, myths and misconceptions people have about HPV and cervical screening​ +- We looked at all the channels we can use to send the invitations out: App message, SMS, email and letter. We are also collaborating with the CSMS Notify UCD team as they are conducting research into the digitalisation of cervical screening invitation, reminder and result letters. +- The flow of questions and branching in the journey (happy and unhappy paths, NHS App focused)​ +- Patterns for verifying someone's address, asking for a new address, confirmation pages​ +- Brainstormed the name of the programme and the service (public facing) +- Brainstormed all the content we may have to write for this service + +![](Slide26.jpg) +![](contenttowrite.png) +![](userflow1.png) + +#### Unmoderated research study - February 2025 + +In this study, we tested 2 journeys: +1. One that started with an NHS App message, that would then take the user to a mobile browser view of an NHS.UK website with the ordering journey + +2. One that started with an email, in a desktop client, that would then take the user to a web browser view of an NHS.UK website with the ordering journey + +The invitation message and the start page had different content so we could test which version addresses the needs of users better. + +![](Slide29.jpg) + +**Design findings and decisions made based on the unmoderated research findings** + +1. There needs to be content about the age eligibility to ensure people of their own eligibility. +2. The invitation message needs to clearly address why a person has been invited. Futher research is needed to better understand how to make the invite more personalised so that the "why" is clearer and what specific content is needed to reinforce that "why" behind they have been invited. +3. If technically feasible, we should display the registerd address from PDS we have on the user. Most participants felt that the NHS should have their addresss on file so they do not have to re-enter this information. It was also not clear that they can choose **any** address, even one that is not their place of residence. For those that were clearer on the fact they could enter an alternative address, they thought this would be updating their address on the system too. Content to making these aspects more explicit will be needed. +4. Explore including an order reference number and the address of delivery on the confirmation page as that matches the user's mental models better. Futher content and usability testing on the confirmation page, notifications and specific updates on this will be needed to get the balance between the right content on sceen and which pieces of information users prefer to follow and which channels. +5. Signpost to traditional cervical screening as an option that is still available to them. This seems to comfort people and to assure them that the NHS is not taking that service away from them. +6. Clearer content around results. Further testing will be needed to get the balance of how much information users will find helpful in regards to how long different parts of the process take such as the swabbing, how long it usually takes a kit to arrive to the lab and in particular results, how long it takes to receive them and how will they receive them. + + + + + +#### Pop-up research study - March 2025 + +With this round of research, we focused solely on Invitation content, to better understand which content users engage with and why. ​ + +**Research aims** + +- To better understand user needs for an invitation to take part in HPV self-sampling​ +- To engage with a more diverse participant pool, including non-responders to cervical screening and understand preferences on being invited to take part in HPV self-sampling.​ + +**Hypotheses​** + +Research conducted by the CSMS team showed users better engaged with invitations via SMS in comparison to other invite content options, trusting the tone and links over those in email invite.​ + +Based on this our hypotheses for this round of research were:​ + +- Including specific information on cervical screening overdue status will mean users are more likely to continue with the journey as they will feel a greater sense of trust that the NHS knows their medical history, and the invite is for them. ​ +- Adding specific content on how the self-sampling kit works and that it does not involve reaching the cervix will mean greater uptake of as users will feel reassured this is something they are able to do themselves.​ + +![Screenshot of slides describing the methodology for the pop-up research](methodologypopup.png) + +**What did we test​** + +- Version 1 of NHS App message invite + +- Version 2 of NHS App message invite + +- Email invite + +- SMS invite + +![](messagestested.png) + +**Design findings and decisions made based on the unmoderated research findings** + +1. There are a few content decisions we had made that tested well. + +![](testedwell.png) + +2. Participants did not initially understand how HPV fits into traditional cervical screening. Using the non-abbreviated human papillomavirus first gives people a better sense of what HPV is, especially when followed up with further info about being overdue for traditional cervical screening as this makes the link between the two stronger.​ +3. There is a need for supporting content to help drive home what HPV is and why it is being tested for. This could be supported by a visual diagram for people who learn in different ways. +4. Some aspects of the invitation and next steps of the process are not clear. Although there is content on how results will arrive (by post) in the email invite it would be better placed in a 'how it works' section so users are more aware of what to expect. +5. Having access to previous screening would allow users a greater sense of confidence in the fact they are 'overdue' allowing them to trust their invite. ​ +6. Users with limited internet access or low digital confidence would benefit from accessing kits in locations like pharmacies or sexual health clinics. This will also allow the option to see the kit before deciding whether to use it. +7. Time-limited participants like to know as much as possible upfront. Having key information in the invite about how the process works, and if there is anything they need to do to prepare, as this will help participants understand what is needed from them. For participants with English as a second language there were specific questions about what was needed ahead of taking part.​ +8. Having information in an easily readable format that can be skimmed for key information is particularly useful for users with dyslexia. +9. There was still confusion around how the self-sample works. Clearly outlining how HPV Self-Sampling works and that there is not a need to touch the cervix may help those who are worried. +10. For some, there were questions on how to tell if the invitation they were receiving was trustworthy and truly from the NHS.​ There were also mention of feeling the invite did not seem personal enough and would then cause doubt in whether this was truly for them. +11. Many participants said they would be happy to click a link in a text message, however, if the link needed to be copy and pasted – they would be less likely to engage with it. +12. A forewarning of the invite would be useful for participants who felt the invite was out of the blue and would help with trust – this could act as a sort of GP endorsement which we know works well in bowel screening, creating more trust of links. + +**What's next** + +- Iterate content to better align with user needs and ensure clarity. Insights from the research have guided refinements in language, structure, and tone to improve understanding and engagement.​ +- Conduct content concept testing to assess how users respond to different messaging approaches​ +- Highlight testing to identify which parts of the content are most effective and engaging.​ +- A/B testing on invite content to determine which version drives higher participation and resonates best with users.​ +- Accessibility testing, to better understand how longer content performs + +**Considerations** + +- On the 21st March, a decision to use the NHS App as the front door for the service. This means we have to rework our user journeys and flows to identify all the scenarios involving the NHS App on web and mobile. +- Pre-election period between 10th April - 2nd May will delay the next usability testing. +- Our team is currently in the process of moving from NHS App governance to a Digital Screeing governance. \ No newline at end of file diff --git a/app/posts/hpv-self-sampling/hpv-self-sampling.json b/app/posts/hpv-self-sampling/hpv-self-sampling.json new file mode 100644 index 000000000..ed8a43b73 --- /dev/null +++ b/app/posts/hpv-self-sampling/hpv-self-sampling.json @@ -0,0 +1,5 @@ +{ + "eleventyNavigation": { + "parent": "HPV Self-Sampling" + } +} \ No newline at end of file diff --git a/eleventy.config.js b/eleventy.config.js index b160e07d2..edc1a2753 100644 --- a/eleventy.config.js +++ b/eleventy.config.js @@ -69,6 +69,10 @@ module.exports = function (eleventyConfig) { return collection.getFilteredByGlob('app/posts/bowel-screening/**/*.md') }) + eleventyConfig.addCollection('hpv-self-sampling', collection => { + return collection.getFilteredByGlob('app/posts/hpv-self-sampling/**/*.md') + }) + // Vaccination collections eleventyConfig.addCollection('book-a-vaccination', collection => { return collection.getFilteredByGlob('app/posts/book-a-vaccination/**/*.md')