How can we enhance HIV Pre Exposure Prophylaxis (PrEP) awareness and access?: Recommendation development from process evaluation of a national PrEP programme using implementation science tools
1School of Psychological Sciences & Health, University of Strathclyde, Glasgow, UK, 16 Richmond Street, Glasgow G1 1XQ
2School of Health & Life Sciences, Glasgow Caledonian University, Glasgow, UK, Cowcaddens Road, Glasgow, G4 0BA
3Institute for Social Science Research, The University of Queensland, Brisbane, Australia, Brisbane St Lucia, QLD 4072
4College of Medical, Veterinary & Life Sciences, University of Glasgow, Glasgow, UK, University Avenue, Glasgow, G12 8QQ
5School of Health & Life Sciences, Glasgow Caledonian University, Glasgow UK, Cowcaddens Road, Glasgow, G4 0BA
6Centre for Biomedicine, Self & Society, University of Edinburgh, Edinburgh, UK, Usher Institute, Teviot Place, Edinburgh, EH8 9AG
7Institute for Global Health, University College London, London UK, Mortimer Market Centre, London, WC1E 6JB
8HPA Health Protection Services, Public Health England, London, UK, 61 Colindale Avenue, London, NW9 5EQ
9Chalmers Sexual Health Centre, NHS Lothian, Edinburgh, UK, 2A Chalmers Street, Edinburgh, EH3 9ES
10Chief Medical Officer Directorate, Scottish Government, Edinburgh, UK, St Andrew’s House, Regent Road, Edinburgh, EH1 3DG
*Corresponding Author: Paul.Flowers@strath.ac.ukABSTRACT
Objectives
HIV Pre-Exposure Prophylaxis (PrEP) is a highly effective biomedical intervention for HIV prevention and is key to HIV transmission elimination. However, implementation is challenging. We identified barriers and facilitators to PrEP awareness and access during the roll out of Scotland’s national PrEP programme to develop recommendations for future provision.
Design
Multi-perspectival qualitative approach incorporating implementation science tools.
Setting
Sexual health services and sexual health/HIV community-based organisations (CBOs) in Scotland.
Participants
Semi-structured telephone interviews and focus groups with geographically and demographically diverse patients seeking/using/declining/stopping PrEP (n=39), sexual healthcare professionals (n= 54), CBO users (n=9) and staff (n=15).
Analysis
Using deductive thematic analysis we mapped barriers and facilitators to PrEP awareness and access. We then applied the Theoretical Domains Framework, Behaviour Change Wheel, and Behaviour Change Technique Taxonomy to analyse barriers and facilitators to generate targeted solutions. Finally, we applied APEASE criteria, expert opinion, and the socio-ecological model to synthesise and present multi-levelled and interdependent recommendations to enhance implementation.
Results
Barriers and facilitators were multifaceted, relating to the macrosocial (e.g., government, service ecology), the mesosocial (e.g., values and practices of organisations and dynamics and norms of communities) and the microsocial (peer influence). We derived 28 overarching recommendations including: incentivising organisations to share expertise, addressing future generations of PrEP users, expanding the reach of PrEP services, cascading effective service innovations, changing organisational cultures, instigating and managing novel outreach, establishing monitoring systems, supporting diverse PrEP users, providing training addressing awareness and access to professionals, and development of “PrEP champions” within a range of organisations.
Conclusion
Improving awareness and access to PrEP sustainably will require intervention across the whole system, changing policy and practice, organisations and their cultures, communities and their social practices, and individuals themselves. These evidence-based recommendations will prove useful in extending the reach of PrEP to all who could benefit.
Article Summary
Strengths and limitations of this study
- We used novel methods and a rigorous study design to create auditable evidence-based and theoretically informed recommendations, moving beyond simple thematic analysis or sole use of expert opinion
- The recommendations are built upon multi-perspectival qualitative data from diverse stakeholders and varied expert opinions.
- Where meta-analyses or meta-syntheses of implementation studies are not available, we offer a structured, practical, evidence-based approach to generating recommendations.
- Limitations include the sole reliance on qualitative insights and our focus on a single national context (Scotland) in the early years of programme delivery.
Article notes
Competing Interest Statement
The investigators named have no financial interests that impact on their responsibilities towards the scientific value or potential publishing activities associated with the study. However, the team has other interests within the field including various roles relating to HIV and sexual health within Government (Steedman, Estcourt, Nandwani, Clutterbuck), policy generation (Steedman, Nandwani, Estcourt, Saunders, Young, Flowers, HIV Scotland), practice (Steedman, Estcourt, Nandwani, Clutterbuck, Saunders) and advocacy (Young, HIV Scotland). PF reports research grants from National Institute of Health Research UK, Chief Scientist Office of Scotland. RN reports research grants from National Institute of Health Research UK, Chief Scientist Office of Scotland and non-executive director membership of the Board of Public Health Scotland from April 2020. JF reports research grants from Chief Scientist Office of Scotland. CSE reports research grants from National Institute of Health Research UK, Chief Scientist Office of Scotland, Engineering and Physical Sciences Research Council, UK Clinical Research Collaboration, Health Protection Scotland, European Centres for Disease Control. JM, JS, IY, DC, NS, LM & JD report no competing interests.
Funding Statement
This study was funded by Chief Scientist Office grant number [HIPS/17/47].
INTRODUCTION
Oral HIV pre-exposure prophylaxis (PrEP), involves taking antiretroviral medication to prevent HIV acquisition. PrEP has an established and increasingly important role in HIV prevention [1, 2] and will be a key component of HIV transmission elimination strategies. However, major challenges to its implementation remain.[3-5] There are inequities in PrEP roll out globally,[6] and uptake varies across minoritised populations such as men who have sex with men, women of colour, people who inject drugs, migrants and trans people.[6-9] International models of PrEP provision are diverse and include provision by HIV specialists, sexual health specialists, family medical practices, and outreach programs.[6]
Current evidence on PrEP implementation draws on a broad range of disciplinary lenses and takes disparate focal points.[10] Specific approaches to conceptualising PrEP implementation include Liu’s PrEP cascade [11] the PrEP continuum of care [12] and the PrEP care continuum.[13] These conceptualisations, and associated literature, are intended to assist with framing, auditing and responding to PrEP implementation challenges. However, the mechanisms by which these high-level conceptualisations enhance future PrEP implementation remain opaque and they fail to provide detailed recommendations for action. Emerging literature, primarily from the USA, also highlights the multi-levelled nature of barriers and facilitators to PrEP implementation, such as individual, relational, community and policy-related influences.[14, 15] To date, no studies have taken a systematic approach to addressing these multi-levelled influences on implementation. We address this gap directly, drawing upon experience of the first two years of Scotland’s national PrEP programme, to develop evidence-based and theoretically informed recommendations to enhance PrEP implementation. In parallel papers, using the same datasets (published elsewhere) we explore issues of PrEP uptake and initiation (Estcourt et al., in preparation) and adherence and retention (MacDonald et al., in preparation). Here we focus on PrEP awareness and access, the first critical steps towards extending the advantages of PrEP to all who may benefit.[16]
Research questions
- What were the key barriers and facilitators to PrEP awareness and access within Scotland’s PrEP programme?
- What evidence-based and theoretically informed recommendations to enhance PrEP awareness and access can be made?
METHODS
Overview
Increasing awareness and access to PrEP requires consideration of settings, contexts, participants, actions and targets.[17] The breadth of these considerations requires a comprehensive methodological approach making use of a range of analytic techniques and explanatory frameworks.[18] We conducted a multi-perspectival qualitative study, using semi-structured telephone interviews and in-person focus groups with geographically and demographically diverse participants.
We used thematic analysis as a starting point then applied implementation science tools to systematically develop recommendations for enhancing implementation.
The four tools were; the theoretical domains framework (TDF),[19] the behaviour change wheel (BCW),[20] the behaviour change technique taxonomy (BCTT),[21] and the APEASE (Acceptability, Practicability, Effectiveness, Affordability, Side-effects, and Equity) criteria.[20] We also use Bronfrenbrenner’s Socio-ecological model [22] as an explanatory model (see Figure 1).
Context
Scotland was one of first countries worldwide to implement a national PrEP programme.[23] The programme was implemented in specialist sexual health services and was made available to Scottish residents who met HIV risk-based eligibility criteria.[23] All clinical care and medication were provided free of charge in concordance with all NHS delivered sexual health care in Scotland. The program was successful in reducing HIV incidence,[24] but has primarily served gay, bisexual and other men who have sex with men (GBMSM) with less impact on other groups and has only identified a minority of individuals with ‘potentially PrEP preventable’ HIV infection.[25] There was no large-scale awareness intervention when the programme was launched to avoid overwhelming clinic-based services due to the anticipated high early demand for PrEP. Instead, awareness-raising occurred within clinics and via community-based organisations (CBO).[26]
Data collection
Recruitment
We purposively sampled diverse key stakeholders across Scotland. HCPs offered sexual health clinic attenders the opportunity to take part in the study across the four urban Health Boards (large organisations within Scotland responsible for their population’s health) in which over 90% of PrEP in Scotland is prescribed. CBO service users were invited to participate in the study via interactions with CBO staff. We recruited these CBO staff, others working within the same CBOs, and HCPs from all 14 Health Boards by email invitation to specific staff.
Data collection
All participants provided informed verbal or written consent immediately prior to the interviews and group discussions. We collected data with the aid of a guide that included open-ended questions designed to explore participants’ experiences and perceptions of the implementation of PrEP. Where possible within the group discussions, dialogue between participants was encouraged rather than between facilitators and participants. All participants talked from their own and others’ perspectives; data were taken at face value. Clinic attenders were offered a £30 shopping voucher as reimbursement for their time. Data collection was led by JM, with input from experienced qualitative researchers, PF, IY, and JF. JM, PF, IY, and JF reviewed and discussed early transcripts for quality assurance purposes. Interviews and group discussions were audio-recorded, transcribed verbatim, anonymised, and imported into NVivo.
Participants
In total, 117 participants took part in in-depth, semi-structured telephone interviews (n=71) or group discussions (n=46) between September 2018 and July 2019. The sample comprised: 39 clinic attenders; 54 healthcare professionals (HCPs); 9 CBO service users; and 15 CBO staff from across Scotland. Group discussions included one type of stakeholder only. All CBOs had an HIV prevention remit and served GBMSM, transgender, and Black African communities.
Clinic attenders were either using (n=23, 59%), stopping (n=6, 15%), declining (n=5, 13%), or assessed as ineligible for (n=5, 13%), PrEP. Ages ranged from 20 to 72 years with just over half (n=21, 54%) aged between 25 and 34 years. All self-identified as men, the majority of whom (n=34, 87%) were cisgender, and gay and bisexual men who have sex with men (GBMSM). Almost all clinic attenders reported their ethnicity as ‘White British’ (n=31, 80%) or ‘Other White’ (n=7, 18%). Most reported a university degree as their highest level of education (n=26, 67%) and that they were currently working (n=34, 87%). The area of residence of clinic attenders reflected a mix of affluence and deprivation.
HCPs were all involved in PrEP implementation and included specialist sexual health clinicians (doctors and nurses of varying seniority and experience), health promotion officers, a midwife, and a clinical secretary with responsibility for PrEP administration. They worked in a mix of rural (n=12, 22%), semi-rural / urban (n=8, 15%), or urban (n=34, 63%) settings. Demographic details of the CBO staff were not recorded and CBO service users were all of Black African ethnicity, predominantly women, and not using PrEP.
Patient and Public Involvement Statement
Public and patient involvement was central to the project and its iterative development, yet this was not limited to a formal PPI workstream. The project developed from and was continuously shaped by collaborations between those involved with making PrEP policy, community-based organisations working directly with PrEP users, clinicians and researchers in the PrEP field. PrEP users were also part of the research team.
Data analysis
Preliminary conceptual work
Given the complexity and span of the potential ways in which PrEP awareness and access could be improved, it was important to focus our main analyses where they were needed most (i.e., where future interventions could enhance PrEP awareness and access). To achieve this, we developed a series of visualizations to conceptualise PrEP awareness and access in terms of the sequential actors, actions, settings and processes involved. We drew on UK policy documents relating to PrEP (see Figure 2 in supplementary files). A group of five experts with experience of developing and implementing interventions to increase awareness and access within their professional/organisational roles used the visualizations to help select priority areas which they felt were most important. These predominantly focussed on actions to support the eventual PrEP user, and linked to CBOs and journeys to, and through, NHS clinical settings.
Priority areas were: (1) Potential PrEP users acquiring knowledge of HIV and its transmission risks in addition to acquiring knowledge of PrEP itself; (2) Potential PrEP users acquiring accurate perceptions of their PrEP candidacy; (3) PrEP users discussing PrEP with others; (4) CBO staff raising issues of PrEP with key communities; (5) HCPs acquiring knowledge of PrEP; (6) HCPs engaging potential PrEP users with PrEP; (7) Sexual health services providing access to PrEP; and (8) Potential PrEP users accessing sexual health services and PrEP care therein.
These eight priority areas were then used to frame the analysis of barriers and facilitators to PrEP awareness and access.
Creation of the recommendations (Research Question 2)
We initially used the TDF to theorise each salient barrier and facilitator (mapping their role as causal influences on implementation across 14 theoretical domains). The TDF is a meta-theoretical tool, synthesising multiple attempts to theorise causal influences on implementation behaviours.[19] Next, we used the BCW [20] to build on the TDF analysis to systematically generate novel intervention elements. The BCW is another tool that brings a meta-perspective to build new intervention content that is both theorised and matched to demonstrable need. As such we used the BCW to suggest corresponding intervention content for the salient barriers and facilitators. These intervention functions were described in further detail using the BCTT (a tool which allows behaviour change intervention content to be explicated in the most granular way possible). JM led these analyses and generated initial recommendations. These were double-checked for accuracy, validity, and credibility by PF. Both JM and PF were trained in using the BCTT. Disagreements were reviewed until consensus was reached.
The initial recommendations were further scrutinized and sense-checked by team members with direct responsibility for delivering and planning PrEP services using the APEASE criteria (Acceptability, Practicability, Effectiveness, Affordability, Side-effects, and Equity) to remove, or adapt any recommendations that were not acceptable, practicable, likely to be effective, likely to be affordable, have side effects or lead to inequity (APEASE criteria, Michie et al., 2014).[20]
To assist with the volume and multi-levelled complexity of the results of the analyses, we synthesised the final recommendations by de-duplicating and putting ‘like with like’ for ease of communication with diverse audiences, and to emphasise the inter-dependencies between the recommendations. This stage was conducted by PF, JM and CSE and checked by the wider team. This approach ensured there was an audit trail available for each of the recommendations. Please see Supplementary file B for the detailed analyses.
RESULTS
1.What were the key barriers and facilitators to PrEP awareness and access?
There was marked heterogeneity in the causal influences shaping PrEP awareness and access with dynamic interplay between a range of upstream and downstream factors. Many findings related to both awareness and access (Table 1).
Key barriers and facilitators were multi-levelled. At the macrosocial level facilitators included governmental will and effective shared learning across networks. Barriers included structural issues such as poverty and racism, enduring stigmas, the ongoing impacts of inadequate sexual health education. In turn, these macrosocial barriers and facilitators shaped, and were shaped by mesosocial-level issues. For organisations, barriers included difficulties adapting their existing skills and experience to PrEP delivery, the existence of services that lacked cultural competence, not using the full range of available settings to promote PrEP, overstretched NHS and CBO services. Facilitators included expanding professional roles within sexual health services such as involving nurse prescribers, and normalising PrEP interactions within sexual health services. At the community-level, barriers included the limited representation of communities and diversity within available materials focusing on PrEP, and the lack of mass media and social media interventions to promote PrEP. Facilitators included dating apps increasing awareness of PrEP in some communities and changing norms.
At the microsocial level barriers included health care professionals lacking confidence in identifying those who may benefit from PrEP, the constrained modality of communicating about PrEP, (e.g., relying on leaflets), individual HIV risk perception. Facilitators included the role of peer influence; the role of knowledge of wider benefits of PrEP amongst health care professionals; the role of social networks; individual learning from peers within some communities.
2.What evidence-based and theoretically informed recommendations to enhance PrEP awareness and access can be made?
Recommendations derived from the barrier and facilitator analysis and application of APEASE criteria are shown below. Table 2 highlights the macrosocial level; Table 3 highlights the mesosocial level; and Table 4 focusses upon the microsocial level.
At the macrosocial level, political will and momentum should be harnessed to drive the development and maintenance of networks of stakeholders across diverse health and social care organisations. These networks should include a broad range of statutory, and community-based organisations to facilitate exchange of skills, lessons-learned and data sharing. Program commissioners should forge effective partnerships across this network (e.g., partnerships between sexual health and addiction services) and encourage joint posts, initiatives and regular meetings. CBOs working with a broad range of communities should ensure initiatives are in place to support PrEP users to take up policy development roles, ensuring those affected by PrEP are well placed to help shape all key decisions. In relation to future generations, government should ensure that young people receive comprehensive relationship and sex education that incorporates PrEP and addresses the specific needs of particular communities (e.g., trans people, people of Black African ethnicity). At the mesosocial level, we recommend establishing monitoring systems that regularly appraise progress in relation to awareness and access. For those in major decision-making roles (e.g., government) such systems should appraise the effectiveness of the cross-sector networks and the partnerships within them; for sexual health services, monitoring systems should include measures of PrEP uptake and reach into communities who could further benefit from PrEP; for those in community organisations, assessment could include the added value of novel partnerships with organisations such as those which traditionally focus on mental health or poverty.
The recommendations at the mesosocial level also suggest that PrEP services are expanded to include provision in other settings e.g. primary care, or community outreach services Critically, across sexual health services and CBOs, effective innovations that increase awareness and access should be formally shared. This means there should be clear processes in place to disseminate any lessons learned about what works well, or what to avoid (e.g., transferring insights into harnessing peer influence between communities).
Both formal and informal opportunities should be provided for peer learning (e.g., shadowing, or the use of protocols and scripts to share good practice). We recommend that organisational cultures are enhanced to ensure that they enable access and that these cultures, once established are actively maintained (and monitored). The generation of such cultures should be driven by stakeholder engagement and the use of data and active monitoring. A system akin to the ‘Investors in people’ accreditation standards [28] could also be co-produced across the sector. This would benchmark services and assure all service-users that holistic and inclusive understandings of sexual health and wellbeing are central and valued within organisations.
We also recommend that diverse, multi-level, awareness-raising interventions should be established and sustained. These interventions should be co-created with the different communities with which they seek to engage. CBOs can play a particular role in making HIV and PrEP more salient in the lives and priorities of communities who could further benefit from PrEP (e.g. drug using communities). Furthermore, coproduction approaches across the sector (community representatives, CBO staff and HCPs) should also provide tools for sexual health services and other providers in the form of culturally appropriate scripts and wider resources. We also recommend that CBOs are encouraged to instigate, develop and evaluate novel outreach (e.g., for Black African communities or trans communities).
At the microsocial level many of the recommendations detailed above should be operationalised through PrEP-focussed training. This should include sector-wide provision of peer-learning and support for diverse professionals.
Complementing this work with professionals, we also recommend focussed activities to normalise PrEP and increase awareness within the diverse communities who could benefit from PrEP. This could involve CBOs facilitating and supporting peer advocacy within networks of minoritized groups who are under-served in relation to PrEP. At the individual level, staff from sexual health services or CBOs should become ‘PrEP champions’ with a duty to maintain and demonstrate PrEP-positive organisational culture.
Finally, there is a need to ensure that all PrEP resources systematically enable individuals to recognise the applicability of PrEP to their particular life circumstances.
DISCUSSION
Main findings
This work is the first to address a significant evidence gap regarding exactly how to improve awareness of and access to PrEP. Awareness and access are fundamental to effective use of PrEP for HIV prevention as they lead to uptake and adherence. Our findings suggest that improved awareness and access needs concerted action across multiple, interdependent and overlapping macro-social, meso-social and micro-social levels involving both healthcare and community systems. It involves the co-ordination of multiple institutions, organisations, communities, teams and individual professionals, patients and the public. The simultaneous cascading of multiple and multi-levelled interdependent changes stands a far higher chance of eliciting sustainable change than any single isolated innovation.[29] Complex and adaptive systems such as health and social care are highly resistant to long term change. To achieve a tipping point within such systems, and to enable the desired emergent effects of genuine changes to awareness and access, targeted and multi-levelled interventions are required. Our analyses suggest where these recommended intervention are needed most and key content. There is increasing recognition of the need for this kind of ‘whole-system’ intervention within public health along with a growing awareness of the concomitant challenges of their implementation.[30] Our findings contribute to the field by specifying practical and accessible recommendations to change the whole system, using novel and auditable methods.
Findings in context
There has been a long-standing acknowledgement of the challenges of increasing awareness and access to PrEP.[31-34] The barriers and facilitators to PrEP awareness and access we found were multifaceted and systemic. Problems at the policy-level were also manifested at the organisational, community, interpersonal and individual levels. Political will and cross-sector activism were vital to kick-starting the national programme, but they did so against a background of long-standing and seemingly intractable social injustice (e.g., homophobia, structural racism, sex-related stigma). This tension between biomedical promise and innovation (i.e., ‘a pill to prevent HIV’), and the complexity of the social systems in which it must gain traction, sits at the heart of PrEP’s role in elimination of HIV transmission. This tension patterns many of our findings and addressing it is key to effective PrEP implementation.[3, 4] At the organisational level, the widespread lack of additional resource to fund the implementation of the PrEP programme, heightened anxieties about already overstretched sexual health services. Key facilitators included the re-organisation of existing resource (e.g., use of nurse prescribing) and the normalisation of PrEP interactions over time (getting over the main innovation hump). Fundamental barriers included a lack of diverse settings in which to access PrEP and services lacking cultural competency. The latter very effectively demonstrated the complex interplay across the macrosocial, mesosocial and microsocial levels and the overarching role of such macrosocial drivers such as historic lack of sexual health education at the policy level. We have previously noted that building cultural competency as a component of improving sexual health literacy is a requirement for sustainable and equitable implementation of sexual healthcare and prevention.[35] At the community level, our findings highlight how attempts to increase awareness and access to PrEP were influenced by long-standing health inequalities. There is a growing literature highlighting this as a key issue.[3, 36-39] In Scotland the decision not to include an early mass media intervention to promote awareness (to buffer services from a surge of people seeking PrEP) meant that existing inequalities were amplified. Prior to PrEP becoming freely available to those who could benefit, some people (e.g., some gay communities) already had the connections to be reached by community norms promoting PrEP, and others did not.[26] Together, the extent and variety of these findings suggest the need for future interventions to enhance PrEP awareness and access to be wide ranging, co-ordinated and multi-levelled.
This work moves the field forwards with evidence-based recommendations grounded within what has been learned from Scotland and detailing suggestions of what is likely to be useful elsewhere. Political will and momentum should be harnessed to maintain a network of stakeholders and drive and incentivise partnerships. In turn, in relation to awareness and access, organisations must put monitoring systems in place, to evaluate their on-going efforts, learn more about themselves, each other, and their interactions and actively share what they are learning. In addition, ambitious multi-levelled awareness raising interventions and approaches need to be co-created with the diverse communities they seek to engage, recognising the role of expertise from across communities and CBOs in addition to specialist clinical and academic knowledge. In parallel, co-created accreditation systems could help e.g. to assure potential service users of organisational cultural-competence.
Strengths and limitations
To our knowledge this is the first study which systematically examines and explores findings from the initial stages of a nationally implemented PrEP programme. Our approach illustrates exactly how it is possible to go further than earlier conceptualisations of PrEP implementation, (e.g.,[11-13]) and use multi-perspectival qualitative data, and multiple analytic tools (e.g., TDF, BCTT, socioecological model) to generate evidence-based and theoretically informed recommendations to enhance PrEP awareness and access to PrEP.
Our systematic approach has given us confidence in our findings which would have been difficult to achieve had we generated our recommendations through other approaches commonly used in recommendation development, meta-synthesis of implementation studies, expert opinion alone, sole reliance on public and patient involvement, or interpreting barriers and facilitators and making ‘common-sense’ judgements about what needs to change.
Our systematic approach reiterates and specifies key lessons-learned from the Scottish roll out of PrEP but also details novel content via the application of our implementation science tools. Our recommendations are firstly determined by granular analyses of the qualitative implementation insights (e.g., akin to those delivered by typical thematic analyses). Secondly, our recommendations stem from our systematic theorisation (i.e., using the TDF) of the barriers and facilitators of prior attempts to deliver to awareness and access. Finally, capitalising on our use of theory, we have then been able to systematically generate recommendations for future awareness raising and access promoting activities using the BCW and the BCTT. All recommendations are auditable in terms of examining which intervention components they stemmed from (i.e., ‘intervention functions’, ‘BCTs’), how they were theorised (i.e., using the TDF) and which specific barriers and facilitators they relate to. Critically, all are drawn from our participant voices. Other strengths include our commitment to stakeholder engagement through the use of multi-perspectival work, expert opinion and wider stakeholder involvement.
Limitations include our reliance on qualitative data alone; our assessment of the relative importance to key barriers and facilitators was not triangulated with quantitative data collected across nationally representative samples of PrEP users, HCPs and CBOs. We acknowledge that data are from a single nation, which had a very specific model of PrEP delivery in which critically, PrEP was free for all service users. The study was conducted in the first two years of programme roll out and experiences will change as the programme matures. The lack of diversity in the demographic characteristics of participants, in particular a preponderance of white, cis-gendered GBMSM, also limits transferability to different settings, given the observed link between PrEP awareness and access and existing health inequalities.
Implications for policy and practice
This systematic generation of recommendations from the Scottish experience has most relevance within the UK, Europe and Australia but these recommendations will also be relevant in other countries with similar health care systems and communities affected by HIV. Our recommendations may be used as direct tools to structure focussed-service planning maximising PrEP awareness and access. For example, using relevant, national and local stakeholders, either the synthesised recommendations, or the more granular recommendations presented in the Supplementary files, could be used to structure discussion and plan implementation effectively, translating our recommendations to the local context.
However, as our work with the socioecological framework shows, a multi-layered and multi-agent approach is prerequisite to enhancing PrEP awareness and access. This is because reinforcing positive feedback loops (i.e., where harnessing change to one aspect within a system reinforces change elsewhere) are likely to be generated between and across the individual recommendations, leading to systems wide change.[29] Future research is needed to evaluate the full impact of the recommendations we present within this paper and others (Estcourt et al., in preparation; MacDonald et al., in preparation). Together they represent a highly complex intervention [40] amenable to both process and outcome evaluation through a natural experimental design.
The use of HIV medication to prevent HIV acquisition has been described as a “game-changer”. Our work provides detailed analysis, based in lived experience, on how this can be implemented more effectively in future. Each step towards better PrEP implementation will be a step towards making HIV transmission a rarer event, and preventing the costly consequences of HIV infection.
Supporting information
Data Availability
No data from this qualitative data set is publicly available. Supplementary file B provides an auditable account of anonymised data analysis.
Acknowledgements
We are very grateful to the users, patients and staff of sexual health services in all 14 Health Boards within Scotland, Drs Ruth Holman, Maggie Gurney, Nil Banerjee, Pauline McGough, Daniela Brawley, Kirsty Abu-Rajab, Hame Lata, Anne McLellan, Alison Currie, Sharon Cameron, Hilary MacPherson, Janice Irvine, Graham Leslie, Ciara Cunningham, Maggie Watts. We thank staff and users of HIV Scotland; Waverley Care (SX Project and African Health Project); THT Scotland; Hwupenyu Health and Wellbeing; and Scottish Trans Alliance. We thank Nathan Sparling, Jacqueline Gray and Robson Dodd for their contributions to the research process.
Competing Interests statement
The investigators named have no financial interests that impact on their responsibilities towards the scientific value or potential publishing activities associated with the study. However, the team has other interests within the field including various roles relating to HIV and sexual health within Government (Steedman, Estcourt, Nandwani, Clutterbuck), policy generation (Steedman, Nandwani, Estcourt, Saunders, Young, Flowers, HIV Scotland), practice (Steedman, Estcourt, Nandwani, Clutterbuck, Saunders) and advocacy (Young, HIV Scotland). PF reports research grants from National Institute of Health Research UK, Chief Scientist Office of Scotland. RN reports research grants from National Institute of Health Research UK, Chief Scientist Office of Scotland and non-executive director membership of the Board of Public Health Scotland from April 2020. JF reports research grants from Chief Scientist Office of Scotland. CSE reports research grants from National Institute of Health Research UK, Chief Scientist Office of Scotland, Engineering and Physical Sciences Research Council, UK Clinical Research Collaboration, Health Protection Scotland, European Centres for Disease Control. JM, JS, IY, DC, NS, LM & JD report no competing interests.
Funding Statement
This work was supported by Chief Scientist Office grant number [HIPS/17/47].
Data Sharing Statement
No data from this qualitative data set is publicly available. Supplementary file B provides an auditable account of anonymised data analysis.
Ethical considerations
The study received ethical approval from the Glasgow Caledonian University Research Ethics Committee (REC) (HLS/NCH/17/037, HLS/NCH/17/038, HLS/NCH/17/044) and the South East of Scotland NHS REC (18/SS/0075, R&D GN18HS368).