Research and analysis

Appendix D: deliberative workshop findings, themes and implications

Published 23 July 2026

This appendix summarises the main themes that were generated in the deliberative workshops. The findings reflect a range of opinions and preferences and also highlight where participants continued to be confused by elements of cervical screening and what information they found most valuable.

Accuracy

This section explores the importance of information about accuracy in helping people make decisions between screening options. ‘Accuracy’ was the term used to refer to the specificity and sensitivity of human papillomavirus (HPV) testing options. Discussions also touched on participants’ concerns about test-user error and how this could impact the accuracy of results.

Workshops 1 to 3 touched on the question of test accuracy but did not focus on how information on accuracy should be communicated. In workshop 4, several exercises probed participants’ informational needs regarding accuracy more deeply. Facilitators communicated that the self-sampling option is thought by some academics to be slightly less accurate than the clinician option, but that there is currently no consensus on this. Participants were then asked to review a series of 5 qualitative statements on test accuracy, and rank these from most to least helpful. They were also asked how they would like information about the uncertainty surrounding accuracy to be conveyed, given the absence of consensus quantitative data. Additional exercises elicited participants’ views on what information they would require more generally and allowed for further discussion of accuracy.  

Main findings

The main findings identified were that:

• accuracy was the most important factor driving participants’ choice of screening method
• the statements judged ‘most helpful’ communicated accuracy concisely, in qualitative terms, and made clear the slight discrepancy between the self-sampling and clinician-taken sampling options
• many participants also appreciated statements which offered assurance that self-sampling is being used in other countries, and that its accuracy is being evaluated - however, some participants felt that other countries were too different from the UK for this framing to be helpful
• the statements judged ‘least helpful’ compared both methods to the cervical screening
• many participants expressed a desire for quantitative data on accuracy once it becomes available and emphasised that this would be a crucial factor for decision-making
• concerns about accuracy of the self-sampling option led some participants to express a preference for clinician-taken sampling

Communicating and framing accuracy

The accuracy of the self-sampling test cannot currently be expressed quantitatively (using percentages or numbers) due to uncertainty in the evidence base and a lack of scientific consensus in the context of whole population screening. An important question for rolling out the new self-sampling option is how to communicate the accuracy of this option as compared with clinician-taken sampling.

At the start of exercise 2 on communicating test accuracy, facilitators read out the following statement to participants, which had been agreed with the Department of Health and Social Care (DHSC) prior to the workshops: 

Evidence suggests that HPV self-sampling may be slightly less accurate than samples taken by a clinician, although there is some uncertainty and no clear consensus on this. What is widely agreed, however, is that self-sampling is still a very good test. As a result, you may hear different views on its accuracy. Given this uncertainty, we are taking an exploratory stance in this exercise and starting with the view that there may be a slight loss in accuracy for a self-taken sample compared to a clinician sample. 

Participants were then asked to consider a series of statements about accuracy, and to rank these from most helpful to least helpful in making a decision between screening options. The 5 statements were as follows.

A. (Comparative.) Comparative evidence suggests that HPV testing using a clinician-taken sample may be slightly more accurate than a self-sample.

B. (Better than in the past.) Since 2019, cervical screening has checked for high-risk HPV. Any HPV testing (done by a clinician or using self-sampling) is more accurate than the previous testing method for cervical screening used before 2019.

C. (No academic certainty in terms of percentages.) There is not yet conclusive scientific evidence to confirm exactly how accurate self-sampling is (in terms of percentage) compared to clinician screening. Self-sampling is already used in some other countries, including Australia and New Zealand.

D. (No academic certainty in UK context/being evaluated.) It is not yet known how accurate self-sampling will be compared with clinician screening in the UK context. This is being evaluated. However, it is already used in some countries including Australia and New Zealand.

E. (Better than not screening.) There is not yet conclusive evidence that HPV self-sampling is as accurate as clinician screening. However, there is evidence that shows either form of HPV testing is much better than not being screened at all.

While there was no consensus, most participants found statement A to be the most helpful. Participants who preferred statement A indicated that this was because it was concise and ‘to the point.’ However, some participants expressed that statement A would be more helpful if it included quantitative data to make its point. Participants also queried why there is a slight discrepancy in test accuracy between the self-sampling and clinician-taken sampling. They wondered if this reflected user error when employing the self-sampling option, problems with the equipment used to ascertain results, issues with posting the sample, or other factors. Participants stressed that the reason for the discrepancy in accuracy needed to be clarified.  

Some participants preferred statements C and D, which mention the use of the self-sampling test in other countries. Participants who found statement C most helpful liked that it provided reassurance about self-sampling by mentioning it is being used currently outside the UK. Some participants preferred statement D because it emphasised that self-sampling is ‘being evaluated’. They felt this framing more clearly highlighted that something is being done to address uncertainty and potential differences in test accuracy.

There was no consensus among participants about how best to frame statements C and D and which country comparisons were most useful to them in deciding between screening options. Some felt that these statements were reassuring as they indicate that the UK population would not be ‘guinea pigs’ for self-sampling, referring to the fact that self-sampling is new in the UK context. For these participants, it was helpful to know that self-sampling has already been introduced elsewhere. Others felt that the comparisons were not convincing because the countries mentioned were too different from the UK. Some participants expressed confusion as to why there is no certainty about accuracy when the self-sampling test is already used in other countries.

Participants disagreed as to whether statement E, which states that either form of HPV testing is better than not testing at all, was helpful or not. Some ranked this as helpful as it communicated that either form of testing would yield a result and information about HPV status. Others found the statement to be flippant or unprofessional and ranked it least helpful.

Across groups, statement B was generally considered the least helpful. Some participants felt it could imply that self-sampling and clinician-taken sampling are equally accurate, when in fact there is a slight discrepancy. Others felt the statement was ‘irrelevant’ because the historical comparison did not clarify or help participants make a decision in the present-day. 

Some participants indicated that the discrepancy between the self-sampling and clinician-taken sampling made them prefer the latter. This shows their overall attitude towards the screening options was impacted by reading the different statements on accuracy, as well as by listening to the DHSC statement read out by facilitators.

Communicating uncertainty

Facilitators shared the following information with participants, to gauge how helpful these statements would be in communicating the uncertainty around test accuracy.

‘The accuracy of a test varies between populations, so until we have tried it here, we will not know exactly how accurate it is (but this will be monitored) – however, trying to explain why populations may or may not be comparable is complex.’

and

‘There is no academic consensus on the discrepancy.’

Participants were asked whether they found this type of information helpful. Many participants did, viewing it as greater transparency and as being positive. However, other participants found the additional context too vague and indicated that they still wanted quantitative statistics to lay out the differences in accuracy despite knowing these are not available. Many participants felt discussion of uncertainty left them with ‘more questions than answers.’

Some participants felt strongly that the discussions were ‘pointless’ as they did not explain who was in disagreement and why. More detail would have helped them understand why these debates matter. Some participants thought that the NHS was ‘trying to put people off self-sampling’ and that the lack of clear information on accuracy, juxtaposed with the knowledge that self-sampling is being used in other countries, made the NHS seem ‘incompetent’.

Information on accuracy throughout the screening pathway

Concerns about accuracy also featured when participants were asked their information needs along the screening pathway. Participants were concerned with accuracy both in terms of test sensitivity, and regarding the possibility that user error could impact results. Participants were presented with a visual timeline illustrating a hypothetical future screening pathway including both the self-sampling and clinician-taken options, from the moment they were contacted for screening to the moment they received their results and follow-up communications. Participants were asked to imagine themselves at each critical juncture along this pathway (for example, evaluating their options, committing to one of the 2 screening options, attending a GP appointment and/or using the self-test) and to indicate what questions they would have and their main informational needs at each point. Then, participants were asked to specifically imagine themselves taking the self-sampling option and being presented with a web resource. They were asked to share what information about self-sampling they would want to be included in this resource.

In both the timeline and web resource activities, participants indicated a desire for information on:

• test contamination
• what would happen if they performed the self-sampling test incorrectly
• how they would know they had done the test correctly
• whether they would receive a back-up kit in case they performed the test incorrectly

At the conclusion of workshop 4, some participants expressed that their concerns about being able to trust their results, due to worries about the potential for user error and test sensitivity of the self-sampling test - this steered them towards clinician-taken sampling. This contrasted with workshops 1 through 3, in which most participants expressed a preference for the self-sampling option. These participants expressed that when they pictured receiving a negative test result, they imagined questioning whether they could in fact trust this result or if they should be concerned about a false negative.  

Test accuracy as the main driver of choice

At the conclusion of the workshop, participants were asked to vote on the main factor driving their decision-making between the 2 screening options. Test accuracy was identified as the top consideration across all groups. Some participants expressed that accuracy was the main driver of choice because it underpinned all the other considerations. Some participants queried the purpose of testing if the test used was ‘less accurate. This was echoed by participants who remarked that if the test was not accurate, this would undermine any other considerations about timelines, processes, or receiving and acting on results. While the information shared with participants stressed that the differences in test accuracy were very small, some participants took this to mean the self-sampling option may not be accurate at all and approached the exercises through this lens. 

For many participants, concerns about accuracy appeared to have shifted their view on the self-sampling option over the course of workshop 4, making them more likely to choose clinician-taken sampling. In other words, beyond wishing to have information about accuracy shared with them to inform their choice, participants’ preferences were shaped by understanding that the self-sampling option might be slightly less accurate than clinician-taken sampling.

Comparison of screening methods

This section uses insights from exercise 3 (differences between tests) in the final workshop to outline participants’ preferences for presenting the pathway, the pros and cons of each screening method and preferences regarding format and tone of language.

To understand preferences for how information on both screening pathways should be conveyed, participants compared a narrative text explanation of the 2 pathways with a side-by-side comparison table of the 2 pathways. To assess preferences for presenting screening pros and cons, they also reviewed a side-by-side pros and cons table and decision aid statements of the 2 pathways which presented statements to help choose the most suitable test for different situations.

Main findings

In the comparison exercise, participants:

• preferred the side-by-side comparison table over narrative text as they found the language and format easier to read and felt it was more accessible to different reader populations
• preferred the side-by-side pros and cons table over the decision aid statements as they found it easier for locating important information  about each procedure to support decision-making
• had divided views on informal language used in statements – some found the use of “you” to be personal and relatable, while others saw this as less factual
• found the side-by-side pros and cons table to convey honesty and trustworthiness and felt that it appeared factual and familiar – some participants, however, found the table to be leading and felt that ‘pro’ and ‘con’ should be replaced with more neutral language

Explanation of the screening pathway – tabular presentation preferred

Information was presented to participants in 2 different visual formats:

• a 2-column table, with each main step in the screening pathway in a separate cell below the column headings ‘Clinician-taken HPV sampling’ and ‘HPV self-sampling’
• 2 sections of standard text ,comprising 3 paragraphs under each heading ‘Clinician-taken HPV sampling’ and ‘HPV self-sampling’

Most participants preferred tabular presentation over the block narrative text for explaining the differences between the 2 testing procedures. Navigating the table format was deemed easier because it broke the screening pathways into clear steps, making the information more digestible and easier to compare. Participants described the table as user-friendly and visually appealing, referring to features such as bold subtitles, bullet points, colours, and a friendly tone. Participants felt this format would better serve diverse groups, including older people and those with visual impairments or learning disabilities. They also appreciated that the table format was more detailed and clarified what each screening option tests for – an area they had previously found unclear. One participant described it as ‘more manageable; it’s broken down into smaller chunks,’ while another stated that with the table format, ‘you manage to take it on board…a lot [easier] to make decisions.’ 

By contrast, participants found the dense nature of the narrative text off-putting. They felt the condensed format made it harder to understand and locate relevant details, suggesting this could lead to lower engagement with the content. For example, one participant noted that with the narrative text, ‘you’re having to pick out the relevant bits’ whereas with the table, ‘it is a lot clearer’ which information was relevant.

Pros and cons of HPV self-sampling

Information was presented to participants in 2 different formats:

• 2 side-by-side columns of text under the headings of ‘clinician sampling’ and ‘self sampling’ – each column containing information under 2 subheadings of ‘pros’ and ‘cons’
• 2 side-by-side columns of statements under the headings ‘Clinicians sampling might be better for you if’ and ‘Self-sampling might be better for you if:’ – this format was described as a decision aid

Participants were divided on the language and format of the side-by-side pros and cons table and decision aid statements. Some felt both employed negative language and were poorly formatted. Some participants felt that the language in both was leading and preferred a neutral presentation that would be informative and enable individuals to make decisions based on factors important to them. Others felt the opposite. They also identified an information gap in both and suggested adding a message emphasising that individuals may change their preferred screening methods during the process if necessary. However, when asked to choose, most participants preferred the table as they felt it was formal and less leading, which they associated with being factual and honest. Some participants highlighted that they found the factual language and table format ‘familiar’ and therefore reassuring, as it resembled other health communications they were used to, with the decision aid statements feeling different and unfamiliar. They did, however, value the ‘personable’ tone of the statements. One group noted they would choose neither, citing a lack of statistics, evidence, and user-friendliness. 

Perceived negative framing

Opinions on the pros and cons presentation were split. Many participants felt that the simple and factual statements (for example, ‘In cases where HPV is found…’) came across as honest, reliable, and direct, with a good level of detail. They appreciated the inclusion of warnings, such as the possibility of ‘discomfort or pain’ because it gives them the facts they need to make an informed choice. One group noted that a pros and cons list reflects the thought process they would have used to come to a decision about screening.

Other participants criticised the terms ‘pros’ and ‘cons’ as negative and leading, feeling that this phrasing dictates what is considered good or bad rather than allowing individuals to form their own judgments. Pre-categorising information was seen as emphasising the drawbacks of screening methods, making them appear more significant than they are. For example, self-sampling is described as ‘slightly less accurate.’ While this difference is minor, placing it under the ‘cons’ column – with its negative connotations - makes it appear more significant than it is. Participants suggested using a neutral term, such as ‘differences,’ to avoid implying value judgments. Participants also noted that an uneven number of cons created a perceived bias towards clinician-taken sampling. Additionally, words like ‘some’ were considered vague and less factual, with numerical figures preferred for clarity. The pros and cons format was also viewed by some as less personal than the statements (explored in the next section).

Views on the format were also split. Some participants found the absence of separation lines or bullet points (in the pros and cons information) made it too wordy and overwhelming. Others appreciated the level of detail, describing the table as clearly laid out and helpful for quick decision-making, with the longer, more detailed suggestion statements helpful as supplementary resources for those who need more guidance when deciding. Some participants felt both resources could be useful. As one participant noted, the pros and cons information could be used initially to convey ‘topline’ information, while ‘anybody that wants further reading…can link to the statements.’

Some participants commented that the format of the pros and cons reinforced their fears about screening. They felt the layout of having their common concerns about screening separated into a section labelled ‘cons’ highlighted and re-emphasised their apprehensions about screening.

Perceived formality of the decision aid statements

Many participants appreciated the reassuring, concise, and personable tone of the statements. They liked the use of ‘you,’ which made the content feel direct and relatable and suggestive language such as ‘you like…’, ‘you’re worried…’  made it feel personal. This framing gave them a sense of freedom in choosing their screening method, making the statements feel informative rather than directive. Other participants, however, considered the use of emotive language (for example, ‘worried,’ ‘confident,’ ‘embarrassing’) to be informal and felt it pre-determined their reactions to aspects of each screening method, making the content seem less reliable and somewhat off-putting. Some felt the language used was also pushing them to pick a particular screening method if they identify with certain behaviours rather than allowing them to choose. For instance, if they identify with ‘you’re particularly worried about cervical cancer’ then clinician-taken sampling is ‘better’ rather than allowing them to choose which they prefer in these circumstances.

The format of the statements received less critique than the table, but some participants found the layout hard to navigate and felt it was difficult to locate the information they would need to make an informed decision. They suggested using bullet points to improve readability and user-friendliness.

Information needs and practical concerns

This section focuses on the information needs and practical considerations that participants identified as important to their choice. Participants expressed a range of practical concerns surrounding the logistics of HPV testing in cervical screening. Many of these related primarily to the self-sampling option as it is new, but some also included questions about the clinician-taken option.

During the workshop, participants were asked to think about the steps involved with cervical screening, starting with receiving a letter about screening options, and ending up with either going to a clinician-taken sampling appointment or receiving a self-sample home test. At each step, they wrote down what information they needed and put it on a timeline. Another activity in the workshop involved reviewing a mock webpage displaying information about both self-sampling and clinician-taken sampling. Facilitators asked participants to write what additional information they needed about these options.

Main findings

The main findings of this workshop were that:

• participants expressed anxiety and uncertainty about the self-sampling process, and emphasised the need for clear, simple instructions to provide reassurance
• there were concerns about hidden financial costs for users, the convenience of accessing the kits and sending results, and privacy – and these significantly influenced decisions on which test to use
• clear communication is necessary to explain what a positive HPV result means and why it is important to attend follow-up appointments at the right times
• participants highlighted the importance of being given the choice between self-sampling and clinician-taken sampling
• participants emphasised the need for a clear explanation of the rationale for introducing the self-sampling option, to present it as a personal decision rather than a cost cutting measure

During workshops 1 and 2, participants received information on the self-sampling process, including how to perform the test and what to expect when they receive the results. The reasons for offering the choice between clinician-taken sampling and self-sampling was also explained – it was highlighted that providing options aims to encourage more people to participate and enhance their overall experience with the screening programme.

The discussions in workshop 4 highlighted where participants were still unclear about details of the process, and highlighted a clear need for straightforward, practical information to help people make informed choices about HPV testing as part of the cervical screening programme. Discussions revealed the importance of:

• providing clear information on how to use the self-sampling test
• explaining how it compares to clinician-taken sampling
• explaining why it self-sampling is being offered

The screening process

During workshops 1 and 2, participants were informed that the kit includes a swab and instructions, both written and in pictures. They were told the procedure involves using the swab to collect a sample from the vagina, which was described as like the nose and throat swabs used for Covid-19 testing. It was also explained that the test must be sent to a laboratory for processing, rather than providing an immediate result, and the instructions guide people how to package and post the sample.

Throughout the exercises in workshop 4, participants had further questions about how the self-sampling testing option is done and how long it takes. They asked about what the self-sampling ‘stick’ looks like, how to tell if the result is positive, and what instructions come with the kit. Participants suggested including diagrams, a simple explanation of the procedure in the self-sampling kit and having online video demonstrations to help provide reassurance. Some participants shared concerns about what self-sampling physically involves and expressed feelings of ‘dread’ and ‘anxiety’ about the process, particularly questioning if it was painful. Some were not clear that the self-sampling swab collects a sample from the vagina, rather than the cervix (as in clinician-taken sampling), which they expressed could be off-putting or confusing at first, as many people find the current procedure for cervical screening uncomfortable . Participants emphasised the need for clear information to explain this difference and help mitigate concerns.

Participants questioned whether self-sampling is being introduced to reduce costs of clinician-taken screening. Some also queried any potential costs involved with the self-sample kit such as postage and ordering expenses – there was a general feeling that such costs could create a barrier to using the self-sampling kit at home. During the workshops, facilitators clarified that self-sampling tests would be provided free of charge under the NHS.

Participants also discussed the practical details of where and how to receive self-sampling kits and send off the test to laboratories.  During the workshops, participants learned that the kit comes with instructions on how to collect the sample, package it, and post it. They were told if the self-sampling is done at a GP surgery instead of at home, the surgery staff will send the sample to the laboratory. In one instance, a participant who is often away from home due to work travel, mentioned it would be helpful to be able pick up a kit from a local pharmacy instead of having it delivered home, since collection and drop-off points are often in inconvenient locations. Participants were also concerned that self-sampling kits might get lost in the post and suggested that having a tracking system and secure packaging would help protect the kits and provide reassurance to those using them.

Some also questioned how ‘discreet’ the self-sampling kits would be and highlighted that certain ethnic groups may feel uncomfortable having them sent to their home address, due to stigma. When discussing clinician-taken sampling, some participants expressed concerns about potential pain or discomfort during the procedure. They asked whether there are ways to make the experience less uncomfortable, or if adjustments could be made to help them feel more at ease and encourage attendance, such as being able to request a female clinician. NatCen facilitators noted down these questions and, where possible, reiterated information that had been shared in earlier workshops about what adjustments could be made to the existing procedure.

Screening timeline

The timeline exercise required participants to consider the steps involved in cervical screening.  At each step, they noted the necessary information and placed it on a timeline. This exercise highlighted practical concerns around the timeframes, mainly focused on how long it takes to get a test and receive results, and what to do if the result is positive. Participants also pointed out that it would be helpful to know whether the self-sampling test ‘expires’ and how quickly they need complete it after receiving it.

Participants emphasised the need for clear communication explaining why they must book a clinician appointment after a positive result, and how quickly they should do it. Others questioned what being positive for HPV means and stressed that there needs to be an explicit explanation of the difference between testing positive for HPV and having cancerous cells, as  they did not find this to be clear in the information they had received. Participants discussed how this misconception needs to be addressed with clearer and more ‘reassuring’ information. Some also questioned whether they must be registered with a GP to book the appointment and if the turnaround times differ between self-sampling and clinician-taken sampling.

Across the group, some participants were unsure about the time intervals between tests. They worried that symptoms might develop if too much time passes, and some suggested offering tests more often and asked why the tests are not being done more regularly. 

During the workshop participants discussed the steps involved for HPV testing in the cervical screening programme, including the letters sent to invite people to screening, and results letters with next steps. Some participants felt that the letters needed to more clearly explain why they were being invited to screening, whereas others felt the letters were clear and did not need more information about the invite or the credibility of results. Participants wanted to know if there is somewhere to contact professionals for more information on self-sampling, such as a helpline or website.

Being given a choice

Participants highlighted several information needs and practical considerations when choosing between the two screening methods. They emphasised that although the new self-sampling option will be offered, they would want to be assured that they could continue to have a test done by a clinician. Additionally, some participants questioned whether cervical screening is mandatory, while others felt there should be more information and guidance to encourage people to attend, highlighting the importance of the test for their health.

Participants questioned why they now have a choice of screening methods  and discussed whether the aim is to reduce clinician-led tests and move towards self-sampling. During workshops 1 through 3, participants were given presentations from experts, and resources to explain why a choice is being offered between clinician screening and HPV self-sampling. This information highlighted that there are several reasons for offering a choice between clinician screening and self-sampling, and the aim of cervical screening is to reduce cervical cancer rates. By increasing the number of people who get screened by offering a self-sampling option, the number of cases of cervical cancer should decrease. It was also outlined that some people report clinician-taken sampling as physically painful or uncomfortable and can cause embarrassment or anxiety. Therefore, offering an alternative is a way to help mitigate potential drawbacks and increase the number of people being screened.

However, discussions in workshop 4 revealed that some participants were still unclear as to why a choice is being offered. Some participants felt that communications about screening  should emphasise a choice between the 2 options, otherwise there might be an assumption that people are being pushed to choose self-sampling in order to cut costs. They explained that this could make them feel like their health is being ‘deprioritised’ and reduce their confidence in the test. In the workshops and the materials provided to participants, it was discussed that some people might think the NHS is offering a choice between clinician screening and self-sampling to save money. However, individuals can still choose clinician screening if they prefer. The purpose of offering this choice is to provide more accessible and convenient options, empowering people to take part in the screening programme.   

Participants also discussed whether they would have to ‘commit’ to one type of test or if they could switch later. Some participants wondered why the self-sampling option is offered if they might still need to go to a clinic for a test if their HPV result is positive. They also felt it would be useful to have information about which groups each test might suit best, such as people with disabilities, before making a choice. This appears to clash with other findings relating to participants finding some of the communications tools too leading. Participants across the group expressed that having information about the differences between the two HPV testing options, and why the new self-sampling option is being introduced, is essential to help them make an informed choice. e participants still felt they did not have enough information about self-sampling to decide which option to choose.

Breakdown of deliberative workshop demographics

Gender: Male (0), Female (30), non-binary, other, prefer not to say (0)

Age: 25 to 34 (12), 35 to 49 (10), 50 to 64 (8)

Ethnicity: White or White British (14), Asian or Asian British (9), Black African or Black Caribbean (2), Eastern European (1), mixed or multiple ethnicity (4), other ethnic group (0)

Education: A levels and above (24), qualifications below A levels (including GCSEs and no qualifications (6)

UK Region: England (26), Wales (3), Scotland (0), Northern Ireland (1)

Screening status: Regular attenders - attending consistently every 3 to 5 years depending on national guidelines (12), irregular attenders - attending occasionally or inconsistently, often outside recommended screening intervals (7), never attenders - never attended despite being eligible (11)