Research and analysis

Information needs and preferences relating to a choice between clinician sampling and self-sampling for HPV testing in cervical screening

Published 23 July 2026

This project aimed to provide an evidence base to inform the development of communication materials for a potential in-service evaluation (ISE) in the NHS, specifically addressing the information needs and preferences of people offered a choice between clinician-taken and self-sampling methods for human papillomavirus (HPV) testing in the NHS Cervical Screening Programme (CSP).

The research was commissioned by the UK National Screening Committee (UK NSC), which is hosted by the Department of Health and Social Care (DHSC). It was delivered by Claremont, in partnership with the National Centre for Social Research (NatCen).

Executive summary

This executive summary presents the key findings and recommendations drawn from focus groups, interviews and deliberative workshops. There was a focus on the complexities surrounding decision-making, such as perceptions of HPV test sensitivity and accuracy.

It is important to note that self-sampling was recommended by the UK NSC for under-screened groups in June 2025, with roll-out in the NHS planned to begin from 2026. This project, however, examined information needs for potentially offering a choice of clinician testing or self-sampling for HPV to all eligible participants of the NHS CSP (including regular attenders). Accordingly, any discussion of the accuracy of self-sampling in this report refers to the whole population context, where evidence on test performance is still emerging.

Research design and scope

The research employed a mixed-methods qualitative design comprising focus groups (33 participants), semi-structured individual interviews (25 participants), and deliberative workshops (30 participants, with 26 attending all 4 sessions). Data was analysed using a thematic analysis approach, enabling identification and refinement of key themes across iterative phases. In summary, the research included:

• focus groups – to explore experiences and attitudes towards cervical screening and self-sampling, generating initial themes and ideas for communication materials
• individual interviews – to provide in-depth, nuanced insights from specific cohorts, including trans people, those with prior abnormal screening results, and international stakeholders from countries where self-sampling is already offered as a choice for all
• deliberative workshops – to enable in-depth consideration of the topic and evidence by participants, and collective reflection and prioritisation of informational needs, with participants engaging in group exercises and reviewing communication mock-ups to articulate their requirements for making informed choices

The recruitment approach was guided by a review of academic literature, project team expertise, and input from a multidisciplinary steering group. Audience segments were selected to capture variation in capability, opportunity, and motivation to engage with cervical screening and to make informed choices between screening methods. While balancing depth and breadth, participant groups were chosen for their potential to highlight challenges and opportunities for implementing a choice of HPV self-sampling at scale.

The recruitment strategy aimed to:

• represent populations most likely to face barriers to clinician-led screening
• include diverse perspectives on autonomy, trust, and communication preferences
• identify informational needs for inclusive and effective communications

Aspirational quotas ensured diversity across:

• education, including over-recruitment of women with low educational attainment (up to A-Level or equivalent)
• ethnicity, with no more than 50% White British; remainder included Black African, Black Caribbean, South Asian, and Eastern European participants
• age, with 20% under 35, 50% aged 35 to 50, and 30% over 50 years of age

The sample was purposively selected to ensure diversity in education, ethnicity, age, and screening history, including seldom-heard groups such as Muslim women, people with disabilities, and those in rural or isolated areas. Ethical approval was secured, and all participants gave informed consent.

A multidisciplinary steering group, comprising experts from academia, public health, clinical practice, communications, and policy (including representatives from NHS organisations, the UK NSC, and relevant organisations) provided ongoing oversight and specialist input throughout the project. Meeting regularly, the group played a critical advisory role by refining research methodology, sense-checking emerging findings, and adding nuanced perspectives to data interpretation and project outputs. Their contributions ensured the research was robust, contextually relevant, and impactful for cervical screening practice in the UK. Full details about the terms of reference for the steering group and membership are available in Appendix G.

Main findings

This section summarises the main findings from all phases of the research, highlighting the dominant themes that were generated from the research and people’s information needs and preferences for HPV self-sampling versus clinician-taken sampling. The findings are organised around ‘3 Cs’ (credibility, clarity, and choice).

The ‘3 Cs’ were based on the thematic analysis of the initial focus groups. It was subsequently validated and refined through individual interviews and deliberative workshops and serves as an overarching structure for understanding participants’ priorities in communication about HPV self-sampling.

Effective communication about HPV self-sampling must be anchored in credibility, clarity, and choice. These principles were consistently valued across all research phases.

Credibility (trust in self-sampling) was closely linked to perceptions of test accuracy, professional endorsement, and international precedents. There was also a need to understand the rationale for the introduction of a new method of screening. Participants wanted transparent evidence, including a desire for comparative accuracy data and specific examples from other countries.

Clarity (clear information and support) was highlighted by participants requesting clear, step-by-step instructions, visual aids, and plain-language explanations about both self-sampling and clinician-taken screening methods. Simple guides, diagrams, videos, and reassurance about the process were seen as essential for building confidence and reducing anxiety.

Choice (between test options) – the offer of self-sampling was most positively received when presented as a neutral, equally valid option alongside clinician testing. Participants valued autonomy and wanted communications to emphasise personal agency, not system-imposed recommendations.

Information needs and preferences  

The information below covers the main themes generated across all research phases. These reflect participants’ priorities for making informed choices between screening methods.

Test accuracy

Concerns about the sensitivity and accuracy of self-sampling were paramount. Although quantitative data on comparative accuracy was not available, participants consistently expressed a desire for clear, honest statements comparing self-sampling with clinician-taken samples. They wanted to understand not only that there may be a slight difference in accuracy, but also the reasons behind any discrepancies (such as differences in sample collection methods or potential for user error). Participants emphasised that even qualitative or narrative comparisons, supported by transparent explanations, would help them make informed choices. Many also requested examples from other countries where self-sampling is already in use, to provide reassurance and context for the accuracy of the method.

Guidance on the overall process

Participants asked for practical details about the self-sampling kit (for example, swab type, instructions, pain or discomfort, kit collection or drop-off) and wanted reassurance about user error, contamination, and what happens after a positive result.

Results and follow-up

Clear information was needed on what different results mean, the necessity and timing of follow-up clinician appointments, and the difference between HPV positivity and a cancer diagnosis.

Comparative risks and benefits

Participants preferred side-by-side comparison tables over narrative text for understanding differences, pros and cons, and suitability for specific groups. Neutral, factual language was favoured to avoid leading or judgemental phrasing.

Support and accessibility

The availability of helplines, online resources, and opportunities for professional guidance was viewed as critical, especially for users lacking confidence or facing practical barriers.

Privacy and data security

Concerns were raised about the confidentiality of samples and personal data, particularly regarding the discretion of kit delivery for individuals facing stigma. While broader issues of data security were mentioned by participants, it is important to note that, for the purposes of information materials, the focus should remain on how personal data is used and protected within the cervical screening programme itself. Other aspects of data security, such as general NHS data handling or external privacy risks, are outside the scope of the information content for this project

Communications format and tone

Participants expressed strong preferences for communication materials that:

• are concise, accessible, and visually engaging (including tables, bullet points, diagrams, videos)
• are respectful and neutral in tone, avoiding patronising or overly casual language
• provide reassurance and legitimacy for both screening options, not pressuring invitees towards one method
• offer clear and practical guidance, including timelines for results and follow-up steps

Implications and recommendations

The overarching implications and recommendations are that:

• communications should clearly explain what is known about the accuracy of self-sampling compared to clinician-taken samples, including any differences and the reasons behind them; where scientific uncertainty remains, this should be acknowledged openly and transparently
• both screening options (clinician and self-sampling) should be presented as valid choices, empowering individuals to make informed decisions based on the best available evidence
• side-by-side comparison tables presented in a neutral language and step-by-step guides with visual aids supporting understanding and accessibility should be used
• clear, upfront information about potential screening results, follow-up procedures and available support resources should be offered
• information should be inclusive and considerate of different needs such as cultural background, trauma experiences, and accessibility requirements; where specific needs arise (for example, translations or alternative formats for accessibility), supplementary materials should be considered – but the core content should take account of these issues within the main materials to ensure broad relevance and reach
• information resources should be updated to include self-sampling accuracy data as it becomes available from UK implementation

Limitations

The research sample, while diverse, was relatively small within each segment, limiting generalisability. As self-sampling has not yet been implemented in the UK, findings are based on anticipated attitudes and hypothetical scenarios rather than observed behaviours or actual experiences. The absence of participants with lived experience of abuse, despite targeted recruitment efforts, means that trauma-related perspectives may be underrepresented. Finally, the ongoing lack of scientific consensus on self-sampling accuracy constrains the practical application of some insights.

Future research opportunities 

Claremont recommends:

• testing and refining tailored communication strategies for specific population segments, including co-production with users and community organisations
• further exploration of trust in healthcare systems and institutions as a mediator of screening uptake
• ethnographic research on social and community influences in decision-making about cervical screening

Conclusion

This research underscores the importance of credible, clear, and choice-driven communication in enabling informed decisions about cervical screening. Effective messaging will be vital as the NHS introduces self-sampling as an option, ensuring that diverse populations are empowered to engage confidently and equitably in decisions about cervical screening.

Introduction and project aims

The UK NSC commissioned Claremont (working with Natcen) to deliver research to support better understanding of the information needs and preferences of people regarding making an informed choice between HPV sampling conducted by a clinician or through a self-sampling process (usually done at home). The research is intended to help inform the development of communications materials (such as the screening invitation letter and leaflet) that will be shared with people eligible for cervical screening when they are invited for screening as part of an NHS ISE of HPV self-sampling.

This project examined information needs for potentially offering a choice of clinician testing or self-sampling for HPV to all eligible participants (including regular attenders) in the NHS CSP. This means that any discussion of the accuracy of self-sampling in this report refers to the whole population context, where evidence on test performance is still emerging.

DHSC hosts the UK NSC, which advises ministers and the NHS in the UK on all aspects of screening, supports programme implementation, and evaluates conditions using evidence-based criteria. In 2017, the UK NSC reviewed the evidence on potential changes to the NHS CSP, including the introduction of HPV self-sampling, identifying the need for further research before implementation. A public consultation confirmed the necessity of UK-specific studies and pilots.

Since then, the YouScreen study in the NHS CSP (in north London) has shown that self-sampling can increase participation among under-screened women. Positive results prompted a UK NSC consultation (November 2024 to February 2025) on offering self-sampling to this group, with a subsequent positive UK NSC recommendation in June 2025. Meanwhile, an ISE is planned to assess the feasibility of offering self-sampling to all those individuals eligible for the CSP.

HPV self-sampling is a promising, effective test that performs well when compared to clinician taken HPV sampling. Australia, New Zealand, the Netherlands, Sweden and Denmark all offer the option of self-sampling as part of their national cervical screening programmes. Research shows that many women find self-sampling convenient and comfortable, enhancing their experience and supporting the programme’s acceptability.

However, as recommended by the UK NSC, further research is needed to understand the effectiveness and acceptability of offering HPV self-sampling to all participants within the UK screening context. This includes comparing the performance of self-sampling to clinician-taken sampling, as some studies suggest it may have slightly lower sensitivity. The ISE will explore whether extending self-sampling to all participants maintains or enhances programme effectiveness while ensuring no harm. The aim of this project is to inform the potential ISE communications strategy of offering all participants this choice.

The aim of offering HPV self-sampling to all people eligible for NHS cervical screening is to improve their experience of the process and increase the acceptability of the screening programme.

There has also been public demand for access to HPV self-sampling, given its benefits, and its popularity and use in other countries. (Note this demand may increase due to the June 2025 UK NSC recommendation to update the current cervical screening programme to offer HPV self-sampling to the under-screened population[1] (to encourage increased uptake of the programme and mitigate inequality in access), with a planned roll-out in the NHS from 2026. This change may lead to increased awareness among more regular attendees for screening. As a result, they might advocate for the option to be made available to them as well.) 

Throughout this project, the project team worked closely with a steering group, bringing together a diverse range of experts from academia, public health, communications, and policy. Its membership included behavioural scientists, epidemiologists, health psychologists, communications and engagement managers, and representatives from key organisations such as NHS England, NHS Wales, NHS Scotland, the UK NSC and other relevant organisations. Members contributed perspectives from research, clinical practice, policy, and public engagement, ensuring that the group reflected the multidisciplinary nature required for robust oversight of the project.

The steering group served as an expert advisory body at all stages of the project, meeting regularly to provide critical guidance and oversight throughout. Members contributed their specialist knowledge to refine the study’s methodology, recruitment strategies, and research materials, and played a key role in sense-checking emerging findings to ensure their contextual relevance. These meetings provided a forum for nuanced discussion, allowing the group to interpret data, address evidence gaps, and consider the practical and policy implications of the research. The group’s input was instrumental in shaping project outputs, supporting the development of robust and contextually appropriate materials and approaches, and ultimately enhancing the quality and impact of the research.

Research aims

The research focused on identifying what information is needed for people to understand these complexities and make an informed choice between clinician-taken sampling and self-sampling for cervical screening. In addition, this research considered what information is needed at different stages in the invitation process: for example, information needs and preferences of all people eligible for screening when they receive their initial invitation as well as the needs and preferences of people who are overdue for screening and sent reminders. More widely, this research can contribute to the UK evidence on cervical screening communication, to support optimal engagement with the offer of cervical screening in the UK.

Narrative literature review  

At the outset of the project, we conducted a narrative literature review to identify key academic and grey literature relevant to HPV self-sampling and cervical screening communication. We searched databases such as PubMed, ScienceDirect, and Google Scholar using targeted keywords including “HPV self-sampling”, “cervical screening barriers”, and “information needs” among others.  In addition, we reviewed policy documents and reports from organisations such as the NHS and the UK NSC, and incorporated recommendations from project experts and the steering group. Literature was selected based on relevance to information needs, communication strategies, and barriers to screening, with a particular focus on UK and comparable international contexts. This approach was iterative and narrative rather than systematic, aiming to highlight critical insights and gaps to inform the research design.

Main findings and knowledge gaps

Self-sampling has been widely researched as a potential alternative to clinician-based cervical screening, specifically as a first screening test within cervical screening programmes. It is important to note that self-sampling typically involves collecting a vaginal sample, which does not include cervical cells; if HPV is detected, a follow-up clinician-taken sample from the cervix is required for further assessment. Academic literature indicates high acceptability rates among women across different demographics, and that self-sampling is generally well-received, with women often reporting reduced anxiety about the procedure as well as reduced feelings of shame, discomfort and embarrassment (see Nelson and others, 2017, Polman and others, 2019, Morgan and others, 2019, Nishimura and others, 2021 and Drysdale and others, 2022). International research is aligned with these narratives, revealing that self-sampling can accommodate individual, societal, cultural and logistical preferences, and therefore reduce accessibility gaps in screening (see Arrossi and others, 2016 and Sormani and others, 2021).

However, decision making around self-sampling versus clinician sampling may not be straightforward for many people due to several complexities. For instance, there are slight variations in sensitivity in detecting HPV through self-sampling compared with clinician sampling, with varying data and opinions about the specific sensitivity of each method (see Arbyn and others, 2019, Yeh and others, 2019 and Rijkaart and others, 2023). In addition, if HPV is detected through self-sampling, the person will be asked to attend an in-person appointment where a clinician will collect a sample of cells from the cervix for further assessment. This follow-up typically involves a clinician-taken cervical sample and, if indicated by abnormal results, may lead to referral for colposcopy. Research points to slightly lower rates of attendance for follow-up colposcopy after a positive self-sample HPV test, in comparison with follow-up after clinician-collected cervical screening samples (see Arbyn and others, 2018). 

A study from McCaffery and others (2005) adds to this argument and reiterates that more needs to be done to truly understand how to meet the informational needs of women, to enable them to make an informed decision to either have a screening sample collected by a clinician or to self-sample. It is important to generate clear communications to inform people and provide them with the right level and depth of information so they can make an informed decision. Personalised communications and easy-to-follow instructions have been associated with higher participation and return rates of home-test kits (see Costa and others, 2023 and a report from Healthwatch, 2024). This becomes even more important when considering specific sociodemographic sub-groups, where elements like culturally sensitive information, accessibility challenges, different perceptions of risk and experiences of trauma are central to their decisions.

Research design and methodology  

This project employed a mixed-methods qualitative research design to explore information needs and preferences relating to HPV self-sampling versus clinician-taken sampling. The research was structured in 3 iterative phases (focus groups, semi-structured interviews, and deliberative workshops) allowing insights from each stage to inform and refine subsequent discussions. We used an inductive, thematic approach to analyse qualitative data. First, we identified recurring themes in the types of information people said they needed and the main drivers of their choices. We then agreed on the main categories and organised the data under these themes. This approach ensured that key findings were grounded in the data collected across all research phases.

Sampling

Sampling was guided by academic literature, project team expertise, and input from a multidisciplinary steering group. Audience segments were selected to capture variation in capability, opportunity, and motivation in line with the COM-B framework (see Michie and others, 2011) to engage with cervical screening and to make informed choices between screening methods. While balancing depth and breadth, participant groups were chosen for their potential to highlight challenges and opportunities for implementing HPV self-sampling at scale. The recruitment strategy aimed to:

• represent populations most likely to face barriers to clinician-led screening
• include diverse perspectives on autonomy, trust, and communication preferences
• identify informational needs for inclusive and effective communications

While different phases of the project were intended for different subsets of participants (further details below) across the project there were aspirational quotas designed to fulfil 3 main demographic and socio-cultural targets:

• education level – as educational levels are a reliable predictor of screening behaviour, we over-recruited women with low educational attainment (A-levels or equivalent and below) (see Damiani and others, 2015); at least 75% of participants with low to medium educational attainment (up to A-Level or equivalent) were recruited
• ethnic diversity – no more than 50% of the sample identified as White British; the remainder included participants from Black African, Black Caribbean, South Asian, and Eastern European backgrounds
• age profile – participants were stratified across 3 bands, 20% under 35, 50% aged 35 to 50, and 30% over 50 years old

Ethics and informed consent

As part of this project, ethical approval was sought to ensure that the research adhered to established standards of research and engagement with participants. The study received favourable ethical approval from the NatCen Research Ethics Committee (reference: P19423), which oversees the ethical integrity of research conducted under its remit and ensures the rights, wellbeing and dignity of participants are safeguarded.

Participants were approached through a recruiter, and the purpose of the research was explained to them in plain language. They were informed of the objectives of the study, what their participation would involve, potential risks and benefits, and how their data would be handled. Participants were also informed of their right to withdraw at any time without giving a reason or facing any consequences. Consent was sought using an explicit opt-in approach, whereby participants were asked to sign a consent form after having the opportunity to ask questions. Where appropriate, verbal consent was recorded. All materials were tailored to meet the needs of the target populations, ensuring that the information was inclusive and easy to understand. This process ensured that participation was fully informed, understood, and voluntary.

All participants were given appropriate guidance and information about the research and understood its purposes and context and were able to give informed consent to take part. We ensured participants fully understood the study, including the types of questions they would be asked. We reiterated at different stages that people had the right to withdraw at any time, without providing a reason, and that withdrawing would not affect their relationship with the research team or any health-related services. Additionally, before taking part participants were assured that they would not be obligated to answer any questions they found uncomfortable and were free to skip any question.

Due to the nature of this research, participants also received a list of relevant organisations to follow up with for HPV-related questions and any mental health support (these included Cancer Research UK, The Eve Appeal, Samaritans and Mind).

Data collection

To ensure a comprehensive understanding of information needs and preferences around HPV self-sampling and clinician-taken screening, the research was designed with 3 distinct qualitative data collection stages. Each phase built on insights from the previous one, allowing for iterative refinement of research questions and materials and ensuring that findings reflected the perspectives of a diverse participant sample.

Phase 1 – focus groups: 6 focus groups were conducted with a total of 33 participants from under-represented and seldom-heard groups, capturing diverse experiences and attitudes towards cervical screening and self-sampling. These sessions generated initial themes and communication concepts for further exploration.

Phase 2 – individual interviews: 25 semi-structured interviews were carried out, including 14 with individuals not involved in the focus groups, 8 with participants from specific cohorts (trans men and/or proxy organisations, and those with prior abnormal cervical screening results), and 3 with international stakeholders from Australia, New Zealand, and Sweden. These interviews provided nuanced insights and allowed for deeper exploration of themes identified in the focus groups.

Phase 3 – deliberative workshops: 4 workshops were held with 30 participants (26 attended all 4 sessions), designed to build on qualitative findings, prioritise informational needs and understand how information should be conveyed to support informed choice. Participants engaged with refined materials and communication mock-ups, enabling richer, actionable insights.

Focus group participants and rationale

A total of 33 participants took part in 6 focus groups, and these were segmented to reflect specific audience groups, guided by the existing literature and practical considerations related to diversity, feasibility, and available literature. These segments covered the following specific audiences.

a) Muslim women: Islam is the second most common religion after Christianity and 6.5% of the UK population identified as Muslim in the 2021 census, compared with less than 2% for any other religion (Office for National Statistics, 2024). Cultural and religious beliefs play a role in Muslim women’s participation in cervical screening. Studies indicate that stigma, embarrassment, limited knowledge about cervical screening, and preferences for female healthcare providers can be barriers to screening (see Marlow and others, 2015 and Al-Naggar and others, 2016).

b) Women who do not attend screening regularly and women who never attend: research shows these groups might experience fear, embarrassment, lack of time, or previous negative experiences as barriers to screening and women from these groups have highlighted the convenience of self-sampling  (see Lim and others, 2017; Yeh and others, 2019 and Marlow and others, 2024).

c) Women who regularly attend screening: research suggests this cohort might perceive self-sampling as a less uncomfortable and more convenient option in comparison to clinician-taken sampling, although some might have concerns about collecting the sample accurately (see Drysdale and others, 2022 and Marlow and others, 2024).

d) Women with physical disabilities: women with physical disabilities may face unique barriers to accessing traditional cervical screening services. In addition to logistical challenges such as transportation difficulties and inaccessible facilities, discrimination  might come from negative attitudes or assumptions from healthcare providers, lack of appropriate accommodations, or insufficient training in disability-inclusive care. These factors can contribute to feelings of exclusion and discourage women with disabilities from attending screening appointments (see Osborn and others, 2012, Gichangi and others, 2003 and Sherman, 2024 (video presentation)).

e) Women living in rural areas or who are geographically isolated or without proximal access to healthcare facilities: geographical isolation can limit access to healthcare services, including cervical screening (see Giorgi and others, 2015 and Arbyn and others, 2018).

f) Women aged 50 to 64: research shows older women might prefer clinician involvement due to concerns about collecting the sample accurately. They may also experience higher discomfort post-menopause during cervical screening with a speculum, lower perceived risk of cervical cancer, and lack of access to HPV vaccination (see Marlow and others, 2019, Waller and others, 2006, De Pauw and others, 2021 and Kasting and others, 2021).

Focus groups were facilitated by trained qualitative researchers using a semi-structured guide developed in collaboration with the project steering group. Focus groups were chosen to allow interactive discussions and enable participants to build on each other’s ideas, as well as to understand shared experiences and attitudes. Each session explored participants’ knowledge of HPV, awareness and perceptions of HPV self-sampling, and communication preferences. Focus groups took place online and discussions were audio-recorded and transcribed.  

Characteristics (and numbers) of focus group participants

Gender: male (0), female (33), non-binary/other/prefer not to say (0).

Age: 25 to 34 (7), 35 to 49 (11), 50 to 64 (15).

Ethnicity: White or White British (16), Asian or Asian British (9), Black African or Black Caribbean (3), Eastern European (1), mixed or multiple ethnic groups (4), other ethnic group (0).

Education: qualifications of A-levels or above (21), qualifications below A-levels (including no qualifications) (12).

Region of UK: England (28), Wales (3), Scotland (2), Northern Ireland (0).

Screening attendance: regular attenders (18), irregular attenders (7), never attenders (9) – see note below.

Note:

• regular attenders are people who attend cervical screening consistently within recommended screening intervals.
• irregular attenders are people who attend cervical screening occasionally or inconsistently
• never attenders are people who have never had cervical screening despite being eligible

Individual semi-structured interview participants and rationale

Building on Phase 1, this phase aimed to gather deeper insights from cohorts identified (through literature reviews, discussions with the steering group and initial findings from the focus groups) as particularly relevant to understanding barriers, preferences, and informational needs around HPV self-sampling and cervical screening. In total, 25 individual interviews were conducted

Of these, 14 interviews were with individuals who had not participated in the focus groups but shared similar demographic and experiential characteristics. The selection of these participants was informed by initial findings  from the focus groups, which highlighted the need to further explore perspectives from groups such as women from ethnic minority backgrounds, and individuals with varying levels of health literacy. Key participant characteristics are available below.

We also conducted 4 interviews with trans men and/or representatives from lesbian, gay, bi-sexual, transgender (trans), queer plus (LGBTQ+) organisations, and 4 interviews with individuals who had experienced an HPV-positive result or abnormal cytology from cervical screening. These interviews provided an opportunity for participants to discuss sensitive or personal experiences in greater detail than might have been possible in a group setting. To minimise tokenism, some interviews were conducted with representatives of OUTPatients, an LGBTQ+ organisation, who shared common insights and attitudes relevant to the subject matter.

Additionally, 3 interviews were conducted with international stakeholders from Australia, New Zealand, and Sweden – countries with established HPV self-sampling programmes. These interviews helped us capture broader context and learning from the implementation of self-sampling in other national screening programmes.

The individual interview format enabled us to explore nuanced issues such as trust in healthcare, experiences of stigma, practical barriers, and preferences for specific messages and communication approaches. It also allowed us to probe areas of consensus and divergence identified in the focus groups. enriching the findings and ensuring recommendations would be relevant to a wide range of populations. Details of the cohorts and insights gained are provided below.

Stages 1 and 2 supported us to have an in-depth understanding of the experiences and attitudes of seldom-heard groups towards cervical screening  and self-sampling, and what information they would benefit from having to make an informed decision regarding HPV self-sampling versus clinician-taken cervical screening. We also generated content and ideas for communications from the different groups to serve as discussion points and prompts in the deliberative sessions. These qualitative insights ensured that the materials and concepts presented in the final deliberative session were well-informed and relevant. Placing the deliberative stage last allowed participants to engage meaningfully with these refined materials, generating richer, more actionable insights.

Characteristics (and numbers) of qualitative interview participants

Gender: male (0), female (14), non-binary/other/prefer not to say (0).

Age: 25 to 34 (4), 35 to 49 (2), 50 to 64 (8).

Ethnicity: White or White British (12), Asian or Asian British (1), Black African or Black Caribbean (0), Eastern European (0), mixed or multiple ethnic groups (1), other ethnic group (0).

Education: qualifications of A-levels or above (9), qualifications below A-levels (including no qualifications) (5).

Region of UK: England (12), Wales (0), Scotland (1), Northern Ireland (1).

Screening attendance: regular attenders (6), irregular attenders (6), never attenders (2).

In addition, we spoke to and conducted interviews with a further 11 people, including:

• 4 representatives from the LGBTQ+ community
• 4 people who had received HPV-positive or abnormal results
• 3 international stakeholders

The characteristics of these individuals were not recorded and so have not been included in the key characteristics information above.

Deliberative workshop participants and rationale

Following the conclusion of the qualitative research phase, the Centre for Deliberation (a specialist deliberative team in NatCen) designed and delivered a series of 4 deliberative workshops with 30 members of the public; 26 participants completed all 4 workshops. The objectives of the deliberative workshops were to:

• build on and deepen qualitative findings regarding people’s informational needs
• identify the information required for people to make a clear and informed choice between self-sampling and cervical screening; more specifically to:
  • ascertain the specific topic areas or categories of information people need
  • place these topics or categories in order of priority
  • understand how this information should be conveyed or formatted

Deliberative workshops were designed with the specific aim of understanding what information people need to make an informed choice about screening method, rather than investigating which option they preferred.

Deliberation is a process in which a group of citizens come together to discuss, and make collective judgements about, a policy question of relevance to the wider community. The groups are designed to be broadly reflective of a larger population in terms of key demographic and/or attitudinal attributes. In advance of the deliberation, participants are given briefing materials outlining the key features of the topic due to be discussed. In the workshops, participants listen to expert presentations and are encouraged to ask questions. This ensures participants have a shared understanding of the evidence related to the topic. Throughout their discussions, participants are encouraged to engage with the views, values, and preferences of their peers. As deliberations usually run for many hours over several workshops, people have adequate time to reflect on the perspectives of others and reach considered conclusions both individually and as a group.

The deliberation was comprised of 3 online workshops (hosted on 2, 10, and 16 June 2025) and an all-day face-to-face workshop hosted in Birmingham on 28 June 2025. The focus of each workshop is described below.  

Workshop 1 (2.5 hours, online): the rationale for cervical screening; the connection between HPV and cervical cancer; the HPV vaccine; and the benefits and drawbacks of the two screening approaches.

Workshop 2 (2.5 hours, online): why a choice between screening options was being offered; what the different approaches would entail; and why there might be different socio-cultural perspectives on the choice.

Workshop 3 (1.5 hours, online): dialogue with expert speakers; asking questions of experts; sharing comments and views with experts; and experts asking questions of research participants.

Workshop 4 (6 hours, face-to-face): assessing informational needs for people making a decision about cervical screening.

To note, on 24 June 2025 (during the time period that the deliberative sessions were taking place) it was announced that the UK NSC recommended that HPV self-sampling should be offered to women who have not attended a routine cervical screening appointment within 6 months or more of their invitation being sent. The announcement received widespread coverage in national media and may have had an impact on the discussions that took place during the deliberative workshops.

The aim of workshops 1 and 2 was to set out the context and substance of the choice being offered, while workshop 3 allowed participants the opportunity to speak directly with experts. The aim of these early workshops was to discuss how participants felt about being given a choice of HPV screening option, and to cover basic information about HPV and screening required for the exercises in the final workshop.

Briefing materials were circulated in advance of workshops 1 and 2. These materials were drafted with contributions from subject matter experts. Each workshop moved between plenary (full group) and breakout (smaller group) discussions and featured expert speakers (for the full list of speakers, their titles and institutional affiliations see the accompanying appendices). Participants also had opportunities to respond to the presentations and ask questions. Workshop 3 was solely comprised of a 90-minute dialogue between experts and participants. 

Discussions in workshops 1 through 3 laid the foundation for the content of our longer, in-person workshop on 28 June 2025. Building on what participants had already discussed (about the different screening options, and the nature of the choice being offered), this workshop asked what information people felt they needed to make a choice between the screening options. Findings in this report primarily reflect data collected in workshop 4, as this was where participants’ informational needs were directly discussed through a series of exercises led by facilitators. The basis of many of the exercises were communications tools or ‘mock-ups’ designed based on insights from the focus group and interview phases of the research. These mock-ups were examples of possible ways information about the choice around screening method could be conveyed. Mock-ups were printed and facilitators showed them to participants as they led them through small group activities.

The exercises undertaken in workshop 4 – tasks, content, and research objectives – are outlined below. The full topic guide for this workshop can be found in the accompanying appendices. Images of the mock-ups used during the workshops are available in the ‘findings’ sections.

Summary of exercises and objectives of the deliberative workshops

Exercise 1: existing cervical screening letter and leaflet.

Discussion exercise: participants were given printouts of the NHS letter and leaflet currently used to invite people to cervical screening and asked to comment.

Objective: to introduce participants to the type and style of communications they will receive regarding self-sampling and cervical screening. Later, when discussing their informational needs, this gave participants the opportunity to point to existing communications as a template – indicating likely length, tone, language and so on.

Exercise 2: screening test accuracy

Discussion exercise: facilitators shared a statement developed by DHSC explaining that the test accuracy of the 2 screening processes for the detection of HPV varies. Facilitators explained that there is no current scientific consensus on the quantitative data available to express accuracy in terms of percentages. Participants were shown a range of mock-up statements conveying the relative accuracy of the 2 tests qualitatively, as well as previous screening processes, and asked to rank them from most to least helpful. Participants were asked if cross-country comparisons (of test use) would be helpful, and whether they would benefit from an explanation about why the accuracy discrepancy was difficult to capture numerically.

Objective: to understand how people want any discrepancy in accuracy between the 2 tests to be conveyed. To know which accuracy statement(s) best enable people to make an informed choice between the 2 approaches.

Exercise 3: differences between screening tests

Discussion exercise: participants were given mock-ups of communication tools comparing self-sampling and clinician-taken sampling. The first 2 mock-ups illustrated different formats for conveying the practical and procedural differences between the 2 screening options. The second 2 mock-ups illustrated different formats for conveying the relative benefits and drawbacks of each. Participants discussed each format and stated their preferences.

Objective: To understand people’s preferred means of conveying the differences between the 2 screening options. To know which renderings (narratives, comparisons tables, pros and cons lists, decision aids) people thought would best enable them to make an informed choice between the two approaches.

Exercise 4: screening timeline

Discussion exercise: participants were shown a cervical screening timeline (including the option of HPV self-sampling and clinician-led screening). For each stage in the timeline, participants noted their informational needs

Objective: to collate the full spectrum of participants’ information needs relating to cervical screening, and to understand when in the decision-making process that information is necessary.

Exercise 5: web resource on self-sampling

Discussion exercise: facilitators explained that a webpage will be made available with information about the self-sampling option specifically, as this option is new. Participants were asked open questions about what information they would like to have on this webpage. This could include things like further information about self-sampling instructions and the logistics of receiving and mailing back the kit.

Objective: To understand what participants needed to know about self-sampling specifically.

Exercise 6: information priorities

Discussion exercise: participants were given a list of different pieces of information (derived from previous discussions) and asked which items were most likely to drive their choice (regardless of their screening preference). Choices were listed on an A3 piece of paper. Using stick dots, participants indicated the main consideration driving their choice.

Objective: to ascertain what is essential for people to know or understand before making a choice (as opposed to what is ‘nice to have’).

In workshop 4, participants worked primarily in small groups (between 5 to7 people). Each discussion then concluded in plenary, with participants sharing their perspectives and the reasons for their judgements. The full-group timeline activity mapped out the range of information participants felt they needed, as well as when they would like or need to receive it. On specific discussion areas (such as how to make the differences between self-sampling and clinician screening clear), participants logged detailed considerations on handwritten worksheets. Discussions were also audio recorded. Workshops were led by a lead facilitator, and small group discussions were moderated by facilitators. British Sign Language (BSL) and Welsh language facilitation and translation provisions were available, however no participants requested them.

Characteristics (and numbers) of deliberative workshop participants

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 ethnic groups (4), other ethnic group (0).

Education: qualifications of A-levels or above (24), qualifications below A-levels (including no qualifications) (6).

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

Screening attendance: regular attenders (12), irregular attenders (7), never attenders (11).

Approach to analysis

Following the workshops, researchers ordered and coded workshop data on Miro (an online whiteboard) and thematically analysed the data. Data was organised by pre-set codes, reflecting participants’ views on basic informational requirements (like clarity, coherence, accessibility), as well as ideas and principles intrinsic to cervical screening (like comparative accuracy). Inductive codes (for example ‘practical information’) emerged as we studied the data and helped us interpret the findings. These cross-cutting themes helped us capture and explain participants’ informational needs and also ascertain people’s highest and lesser priorities.

The deliberative workshops were designed with the specific aim of understanding what information people need to make an informed choice about screening method, rather than investigating which option they preferred. Though participants expressed their views on the different screening options during the workshops, it was emphasised throughout that the research team was not promoting any particular option.

Results

This section draws together findings from the 3 phases of the research, with a focus on how recurring themes presented in each of the 3 phases. The themes are presented in order of importance, to highlight which aspects have the greatest bearing on supporting informed choice.

Clarity and accessibility of process Information

Across all 3 phases, participants consistently emphasised the need for clear, comprehensive, and easily accessible information about both self-sampling and clinician-taken sampling procedures. They wanted step-by-step guidance explaining what each method involves, how samples are collected, what to expect physically and emotionally, and practical details such as where and when tests can be taken. Resources that demystify the process, address common concerns, and include visual or demonstrative aids were seen as essential to support understanding, regardless of health literacy or language background.

Focus groups: across all groups, participants frequently highlighted the importance of practical, easy-to-follow instructions for both sampling methods. They stressed the value of clear timelines and guidance on when and how tests should be taken.

Interviews: interviewees reinforced these points, particularly the need for visual aids and demonstrative resources to make the process more understandable and inclusive for people with varying literacy levels or language needs. This theme recurred throughout the interviews.

Deliberative workshops: participants indicated that initial communication about screening needed to clearly explain the reasons for being invited to screening, why self-sampling was being introduced, and why it was being offered as a choice (emphasising it is a personal choice). Information outlining a person’s eligibility to be able to request and receive the tests as well as the differences between the 2 screening methods was also seen as important. When discussing clinician-taken sampling, some participants felt it was useful to know whether there were ways to make the procedure more comfortable, or whether adjustments could be made to reduce discomfort and encourage attendance. Views were mixed on whether information should include guidance on which groups might be better suited to each test.

Uncertainty about the details of the practical aspects of self-sampling was also expressed. Participants raised questions about what the self-sampling swab looked like and what instructions would accompany the kit. Concerns were expressed about the level of discomfort for each test. Participants were also not always aware that the self-sampling swab collected a sample from the vagina rather than the cervix. Discussions therefore highlighted the importance of providing clear and accessible information on what the kit contains and how it looks, warnings about the level of discomfort, and where the sample is collected from, to help address concerns. Suggestions included the use of diagrams, simple explanations of the procedure, and online video demonstrations to provide reassurance.

Understanding test accuracy and its limitations

A main theme across all phases was the need for transparent information about the accuracy of both self-sampling and clinician-taken sampling. Participants wanted clarity on how the 2 approaches compare in terms of sensitivity, the likelihood of invalid or inconclusive results, and the factors that might influence outcomes. They also sought practical guidance on how to minimise errors during self-sampling and what steps to take if results are unclear. Confidence in self-sampling was closely tied to the quality and clarity of this information. Communicating test accuracy remains challenging, given the lack of a definitive scientific consensus on the relative accuracy of the 2 testing methods.

Focus groups

Participants repeatedly called for clear explanations of accuracy, including comparisons between methods and the potential for inconclusive results. Their trust in self-sampling was strongly linked to receiving clear, practical information about the offer in general.

Interviews

Interviewees expressed interest in quantitative data on accuracy. They valued reassurances that self-sampling is used internationally and that its accuracy is under active evaluation.

Deliberative workshops

Discussions in the workshops indicated that accuracy was the most influential factor in participants’ choice between self-sampling and clinician-taken sampling. Concise statements that directly addressed the slight discrepancy in accuracy between the 2 options were viewed as most helpful. Many participants valued reassurances that self-sampling was being used in other countries and that its accuracy was actively being evaluated, although some felt that comparisons with other countries were not always relevant or convincing. There was a notable desire for quantitative data on accuracy, despite the recognition that such data are not currently available for self-sampling in the UK – if this becomes available in the future it is likely to be beneficial to add it into information materials.

Participants expressed varied preferences for the way information on accuracy was communicated. Statements that clearly acknowledged the slight reduction in accuracy for self-sampling, and explained the reasons for this, were rated most useful. However, other participants felt frustrated by a lack of quantitative detail and transparency regarding why this discrepancy exists. Statements referencing international use of self-sampling were reassuring to some. Additionally, participants were divided over whether it was helpful to simply state that any form of HPV testing is better than none at all. 

The communication of uncertainty around test accuracy was also important. Many participants appreciated transparency about the lack of academic consensus and the complexities of comparing data across populations. However, for some, this openness about uncertainty led to increased confusion or scepticism, particularly in the absence of clear statistics or explanations of the disagreements within the scientific community. Concerns about the accuracy of self-sampling influenced some participants to prefer clinician-taken sampling, especially as questions about user error and trust in negative results persisted. For many, any perceived reduction in accuracy with self-sampling outweighed other practical or emotional advantages, reinforcing a preference for clinician-taken sampling.

Result interpretation and next steps

The need for guidance on how results would be communicated, what different result scenarios mean (positive, negative or invalid), and what actions would follow each outcome was emphasised by participants throughout the research. They wanted information not just on the immediate test outcome, but also on what the pathway would look like after receiving results, including timelines, follow-up procedures, and who to contact for further support or clarification.

Focus groups

Participants expressed a concern about the absence of immediate confirmation (as seen in other ‘at home’ tests, for example for pregnancy, Covid and so on) leading to a fear their test would be invalid. Many worried about false positive results and needing to attend additional (and unnecessary) clinician appointments, while some also worried about missed diagnoses.

There was some confusion regarding why a person who completes self-sampling might be recalled for clinician-taken sampling, with some assuming it was because the test was invalid and others assuming it meant something was wrong. Clear up-front information about the role of clinician follow-ups is important, both to manage expectations and to preserve the credibility of self-sampling.

Interviews

Interviewees emphasised the need for clear information on result interpretation and next steps. They wanted to know what different result scenarios mean (positive, negative, invalid) and what actions would follow each outcome.

Deliberative workshops

Participants highlighted a need for greater clarity around timeframes for receiving results. They wanted to know how long it takes to get a test and receive results, and whether turnaround times differ between self-sampling and clinician-taken sampling. Participants also sought clearer information about what to do if a result is positive, what testing positive for HPV means, and emphasised the importance of explicitly explaining the difference between testing positive for HPV and having abnormal cells. This misconception was seen as requiring clearer and ‘reassuring’ communication.

Some participants expressed concern about making errors that could invalidate results, questioning whether self-sampling kits might ‘expire’ and how quickly they should be completed once received.

There was also some confusion about why the self-sampling option is offered if a clinic appointment is still required following a positive HPV result. Some participants expressed that since a positive result from self-sampling could require seeing a clinician anyway, this made them more likely to prefer the clinician option overall as they believed it would be more efficient and streamlined, removing the number of steps required to receive care. Participants stressed the importance of clear communication about why a follow-up clinician appointment is necessary, and how soon it should be booked.

Across the group, uncertainty remained regarding the time intervals between tests. Some participants worried that symptoms might develop if too much time passes, while others suggested that testing should be offered more frequently and questioned why it is not.

Comparative risks, benefits, and suitability

To weigh their options, participants requested information comparing the risks and benefits of self-sampling versus clinician-taken sampling. This included contextual suitability such as which method might be recommended for particular groups, and whether there are circumstances in which one method is advised or not advised. Participants valued information that enabled them to consider their own personal preferences, screening history and any contraindications in their decision-making process.

Focus groups

Participants were particularly confused about why it was not necessary to take a sample from the same anatomical location for self-sampling as for clinician-taken sampling. This often led to questions around accuracy. For many, reassurance was needed that collecting a vaginal sample, rather than a cervical sample, would still yield reliable results for HPV testing. Clear explanations about the basis for sample collection methods, and how comparable accuracy is achieved, would help address these concerns.

Interviews

Interviewees requested information comparing the risks and benefits of self-sampling versus clinician-taken sampling. They wanted to know which method might be recommended for particular groups of people and whether there are circumstances in which one method is preferred or not advised.

Deliberative workshops

Participants wanted a neutral and positive language, tone and format to be maintained when presenting benefits and risks to allow a person the autonomy to make their own choice based on factors important to them. Participants were mixed about the language being formal or informal with some participants being comfortable with both styles. Opinions also varied on information provided suggesting suitability for different testing methods; while some found this helpful, others felt it was leading. 

Support resources and points of contact

Participants highlighted the importance of knowing what support would be available throughout both the decision-making and sampling process. This included clear information on accessible helplines, online resources, and options for face-to-face or virtual guidance when needed. Having opportunities to ask questions or resolving uncertainties was seen as essential for enabling an informed choice.

Focus groups

Participants noted that clinician involvement in screening made them feel “safe, supported, and connected to the healthcare system”. They stressed that, if this involvement were reduced, alternative forms of support would need to be clearly communicated to maintain reassurance. 

Interviews

Interviewees echoed these concerns, emphasising the value of knowing where to seek help and what resources (such as helplines, online tools, or in-person guidance) would be available during the process.

Deliberative workshops

Participants suggested that communications should provide links to further information or information in different formats, as well as signposting to places where questions can be addressed, such as to a professional, website, or helpline.

Confidentiality and data security

Information on how privacy is maintained throughout the screening process was important to many participants. Their concerns related specifically to how the NHS and healthcare professionals would handle their personal data and biological samples, and how confidentiality would be protected at each stage, whether using self-sampling or clinician-led approaches. This was particularly relevant for individuals worried about stigma or the sensitivity of their health information (receiving kits at home, or kits being lost), who wanted reassurance that their details would be kept private and not disclosed inappropriately by health service staff or through the logistics of kit delivery and sample processing.

Focus groups

This theme did not surface in the focus groups.

Interviews

To address concerns about self-sampling kits being lost in the mail, participants recommended implementing tracking and secure packaging to safeguard samples and provide reassurance. Additionally, they emphasised the importance of discreet packaging, noting that stigma or privacy concerns, particularly among certain ethnic groups, could make receiving such kits at home uncomfortable.

Deliberative workshops

Participants were concerned about self-sampling kits being lost in the post and suggested tracking and secure packaging would protect and reassure those using them. Some felt it was important that kits are discreet, noting cultural stigma that may make people from certain ethnic groups uncomfortable receiving them at home.

Wider NHS service concerns

There was some scepticism among participants regarding whether the introduction of self-sampling would genuinely be about increasing choice and patient experience, or whether it was the result of cost-cutting and linked to potential erosion of NHS services.

Focus groups

There was a curiosity about the underlying rationale for introducing self-sampling, with concerns expressed about the erosion of NHS services and reductions to direct engagement with health professionals. While these concerns may not directly affect information needed to make an informed choice, there is reputational consideration in terms of how the introduction of self-sampling is perceived requiring careful attention to communications regarding the rationale.

Interviews

Interviewees shared similar concerns about the potential erosion of NHS services and the reduction in direct engagement with health professionals. They emphasised the need for clear communication regarding the rationale behind introducing self-sampling.

Deliberative workshops

Participants expressed it was important to explain why the choice is being offered; elaborating that it should be specified that it is because they are being given a personal choice rather than it being a cost-cutting exercise.

Conclusions and recommendations

To guide the development of effective communications around HPV self-sampling, this research identified 3 core principles:

• credibility – confidence in the method and trust in the process
• clarity – understanding the nuances of the process and different scenarios
• choice – feeling empowered to make decisions and follow individual preferences

Findings from this project suggest that effective communication around HPV self-sampling must be anchored in 3 interdependent principles of credibility, clarity, and choice. The ‘3 Cs’ ensure that self-sampling is communicated in a way that builds confidence, explains the process transparently, and supports informed decision-making.

These values consistently surfaced across focus groups, interviews and deliberative workshops as essential to how people assessed the legitimacy, usability, and desirability of the self-sampling offer. Participants’ willingness to engage with self-sampling was not based on any single factor alone, but rather on the extent to which they could trust the method, understand the process, and feel free to make an informed decision.

Credibility emerged as the most foundational concern, particularly for participants unfamiliar with self-administered health testing. Many expressed deep-seated trust in clinician-taken cervical screening due to the perceived expertise and reassurance that comes with professional involvement. While participants were not necessarily opposed to HPV self-sampling, they wanted clear evidence that it was equally valid, effective, and safe. The knowledge of international precedents helped bolster this sense of trust, but scepticism remained where the rationale for introducing HPV self-sampling was vague or difficult to grasp. To build credibility, communication must transparently present information and data on accuracy and explain the screening methods in place, without overstating certainty.

To address credibility concerns, HPV self-sampling communications should provide clear, evidence-based explanations of what is known (and not yet known) about self-sampling accuracy, using plain language and visual resources where possible. Where uncertainty exists, it should be contextualised not only with practical instructions on how to perform self-sampling, but also with information about the safeguards and quality assurance measures in place, such as laboratory procedures, sample handling protocols, and steps taken if a sample is invalid, to ensure reliable results. As further evidence on the accuracy of HPV self-sampling for all those eligible in the cervical screening programme becomes available, particularly from large-scale UK implementation, this information should be updated and communicated transparently.

Updated data should be integrated into official guidance, educational materials, and public health messaging to reinforce credibility and address lingering uncertainties. This ongoing sharing of evidence will not only strengthen trust but also ensure that individuals can make decisions based on the most current and robust information available. This approach will be important to reduce confusion, counter scepticism, and maintain confidence in both self-sampling and clinician-taken options.

Credibility alone was seen as insufficient without clarity. Many participants struggled to understand what self-sampling would involve, how it differed from clinician-taken testing, and what different outcomes (for example being offered a clinician-taken test) might signify. They also wanted to understand why there was a discrepancy in accuracy between the 2 test types. These gaps in knowledge often fed into concerns about whether people could use the test correctly or whether the results could be trusted. Participants called for highly practical resources, such as visual step-by-step guides, videos, and plain-language explanations on how to use the self-sampling kit – not only to reduce anxiety but to ensure procedural confidence. Importantly, clarity also applied to the broader context of self-sampling, that is people wanted to understand the journey, from receiving the kit to possible next steps, so they could engage with it as a coherent process, not an isolated one-time action.

Choice functioned as the ultimate expression of empowerment. Participants valued having options but emphasised that choice only felt meaningful when both self-sampling and clinician-taken testing were presented as reliable.  When choice was framed neutrally, supported by credible information and delivered with transparency and clarity, participants felt respected and in control. This sense of agency was especially important for those who have historically experienced exclusion, trauma, or mistrust in health services.

What became clear throughout the research is that taken together, the ‘3 Cs’ can offer actionable guidance for shaping public health messaging around HPV self-sampling. Successful HPV self-sampling communications should aim to be holistic, ensuring that all 3 elements are embedded from the first point of contact through to the final stage of follow-up. This is particularly important for populations with diverse needs, who may require additional reassurance, alternative formats, or culturally tailored content to fully engage with the offer.

Main takeaways from this research

The following provides a summary of the main themes identified in this research.

Credibility

Main message: build trust in self-sampling by transparently sharing what is known and unknown about test accuracy.

Supporting points: reference international experience, acknowledge uncertainties and consider professional endorsement for new approaches.

Clarity

Main message: clear instructions and visual guides are essential for people to feel that self-sampling is a safe option, and to feel confident they can collect a sample if they choose to do so.

Supporting points: use plain language, diagrams, and videos; address concerns about mistakes or kit handling through practical demonstrations.

Choice

Main message: empower individuals to choose between self-sampling and clinician-taken sampling without bias or pressure.

Supporting points: offer both options neutrally, highlighting personal agency and respecting diverse preferences.

Test accuracy

Main message: differences in accuracy should be explained honestly and with clarity.

Supporting points: use clear qualitative or quantitative data where possible, explain causes of any discrepancies, and reassure with evidence and references to ongoing research in the area.

Process guidance

Main message: people requested practical, detailed information about how to collect and submit their sample.

Supporting points: explain kit contents, instructions, pain or discomfort, collection/drop-off processes, and what to do if people receive positive results.

Result interpretation and next steps

Main message: results and follow-up steps must be communicated in a way that reduces confusion and anxiety.

Supporting points: clarify what results mean, when and why to see a clinician, and the distinction between HPV positivity and a cancer diagnosis.

Comparative risks and benefits

Main message: present risks and benefits of each sampling method clearly and without judgement.

Supporting points: use side-by-side tables and factual/neutral language to help people make informed decisions.

Privacy and data security

Main message: address and reassure people about the privacy of their samples and personal data.

Supporting points: highlight discreet delivery, secure data handling, and protection for those who might face stigma or confidentiality concerns.

Communication format and tone

Main message: all materials should be accessible, neutral, and respectful to foster understanding and legitimacy.

Supporting points: use concise, visually appealing formats, avoid patronising language, and provide practical timelines for results and next steps.

Wider NHS service concerns

Main message: clearly communicate the rationale for introducing self-sampling to maintain trust and programme credibility.

Supporting points: emphasise empowerment and service effectiveness, addressing scepticism about motives such as cost-cutting.

Limitations

One limitation of this project lies in the scope and representativeness of the sample. While the research deliberately targeted underrepresented groups such as Muslim women, individuals with physical disabilities, trans men and people in geographically isolated areas, the sample size within each segment was relatively small. This was necessary to allow for depth and nuanced exploration but limits the generalisability of findings for those groups and across the broader population.

Another important limitation relates to the reliance on hypothetical engagement with a choice of self-sampling, rather than observed behaviours. As the offer of HPV self-sampling has not yet been widely rolled out in the UK, participants were asked to reflect on mock materials, imagined scenarios, and abstract choices. While this approach generated valuable insights into perceptions and informational needs, it cannot fully account for how people will respond when making real-life decisions in the NHS CSP. Future research will be needed to assess how communication materials translate into behavioural outcomes once self-sampling is implemented at scale.

We had planned to include survivors of sexual abuse in the interview sample (Stage 2) to better understand how experiences of trauma may shape engagement with the offer of HPV self-sampling. Despite significant effort and multiple outreach attempts through trusted intermediaries and support organisations, it was not possible to recruit participants from this group. This limitation reflects the understandable sensitivities and barriers to participation among individuals with lived experience of abuse and highlights the need for future research to explore tailored, trauma-informed approaches to engagement. Their absence from the sample means that the findings may not fully capture the perspectives of those for whom issues of trust, privacy, and bodily autonomy may be particularly salient.

Future research opportunities

One main area for future research is evaluating the real-world impact of different types of self-sampling communications. While this project focused on anticipated attitudes and informational needs, longitudinal research will be needed to assess how people respond to and engage with various communication formats (such as written letters, videos, or in-person explanations) once they are implemented. This means examining whether stated preferences for self-sampling (for example, intention to participate or preferred format) are reflected in uptake of the self-sampling offer and levels of engagement with different campaigns.

Another valuable avenue for exploration is the design and testing of tailored communication interventions. While this study identified core messaging principles (the ‘3 Cs’) and used general mock-ups, future work should consider evaluating specific content strategies across population segments. Such as trauma-informed materials, translated or culturally adapted content, or digital tools with interactive elements. Co-production approaches involving community organisations, healthcare providers, and users themselves could help refine messaging for groups who face greater barriers to engagement, ensuring that self-sampling communications are not only inclusive but actively empowering.

Additional research is needed to better understand the psychosocial and emotional dimensions of cervical screening or HPV self-sampling choices. For some participants, self-sampling raised fears about doing the test incorrectly or having to interpret results alone, while for others it enhanced autonomy and reduced anxiety. Future qualitative studies could investigate how self-sampling intersects with health literacy, medical mistrust, and past experiences of care (particularly among people with complex health needs or prior trauma). Understanding these deeper layers will be essential in developing more empathetic, effective screening offers that respond to people’s lived realities.

On the other hand, future (qualitative) research could explore the role of trust in healthcare systems and institutions as a mediating factor in HPV self-sampling uptake. This study surfaced varying levels of trust in medical advice, government programmes, and screening initiatives, particularly among marginalised groups. In-depth interviews or focus groups could investigate how trust is built or eroded through past healthcare experiences, cultural narratives, and interpersonal interactions. Understanding these dynamics would help tailor communication and engagement strategies that resonate with communities who may be sceptical or disengaged from mainstream health services.

Finally, there is a clear opportunity for conducting ethnographic or community-embedded research to explore how self-sampling is discussed and understood within real-life social networks. Much of the current work draws on individual reflections, but future studies could look at how peer influence, family dynamics, cultural narratives, and community leaders shape decision-making. These insights would be especially relevant for groups with historically lower screening uptake or where collective decision-making norms prevail.