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Keywords:

  • HIV;
  • patient and public engagement;
  • public involvement;
  • reproductive health;
  • sexual health

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

Objectives

To explore barriers, challenges and best practice within patient and public engagement (PPE) in sexual and reproductive health and HIV (SRHH) services in London.

Methods

Consultation exercise using qualitative interviews with 27 stakeholders including commissioners, managers, voluntary/community organizations (VCOs) clinicians and patients, analysed using Framework Analysis and Atlas.ti software.

Results

Participants recognized PPE's importance, echoing recent political and NHS drives, and highlighted the need for meaningful, empowering PPE, including user-designed methods, peer research and participatory approaches. Although challenging in SRHH and requiring training and support, PPE may help tackle stigma, and promote self-management and patient-centred-care, including peer education and role modelling. Expertise may come from experienced VCOs. Themes in priority order were: organizational commitment (including lack of dedicated staff, time and money); motivating patients; changing NHS philosophy; informing patients/public; using public awareness/education campaigns; overcoming stigma; working with VCOs. ‘Reaching out’ to engage underrepresented groups in this sensitive area was emphasized through community outreach, incentivization and linking with existing organizations. Making engagement easy and addressing issues of public value were also important. Stigma was less hindering than anticipated, except for ethnic minorities. PPE was seen to improve patient satisfaction, increase service uptake and reduce inequalities, key priorities in SRHH, and identify innovative service delivery ideas.

Conclusions

PPE is crucial in creating a patient-led NHS and responsible society. If organizations, including the NHS, commit to implementing meaningful PPE which actively targets those at risk of poor SRHH, services can be truly patient-led and patients and communities empowered to tackle the stigma of SRHH.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

Patient and public engagement (PPE) comprises involving, consulting and listening to patients and the public. PPE in healthcare services consists of using patient and public input into service design and delivery.[1, 2] Activities include patient surveys, clinic ‘comment’ books, focus groups, representation on management boards, or patients running services. PPE can make services more responsive to patients’ needs, improve the patient experience, add value to services, support good governance and improve clinical outcomes, encouraging patients to take a more active role in their healthcare.[3]

The National Health Service (NHS) is aiming to become more ‘patient-centred’,[4] where patients are empowered and their voices heard at all levels.[5] Involving patients both in their care and wider decision making is now recognized as essential in creating a more accountable NHS. The challenge is now to embed PPE in commissioning, decision making and service provision contracts,[3, 6] driven by World Class Commissioning, which states PPE as one of its 11 competencies.[6]

PPE guidance rarely focuses on specific healthcare sectors. The London Sexual Health Strategic Framework[7] includes a PPE standard: ‘sexual health services involve users in their design and delivery and regularly measure the experiences of service users’, as do the recent British Association for Sexual health and HIV (BASHH) standards for the management of STIs.[8]

London has the highest prevalence of sexual ill health in the UK.[7] Particular concerns are: genital chlamydia, late diagnosis of HIV, repeat abortions and teenage pregnancy, with wide variations across the city in sexual health needs, service provision and prioritization.[9]

Sexual ill health is a particular risk for young people (YP), black and minority ethnic groups (BME) and men who have sex with men (MSMs).[10] The large, ethnic diverse, young, mobile population of London and variations in wealth across the city further complicate the epidemiology and demand for services in sexual and reproductive health and HIV (SRHH).[9]

PPE is more common in HIV/AIDS than STIs and contraceptive services, given its history of advocacy and engagement,[11] although focused on access and waiting times.[7] The stigma around SRHH makes PPE particularly challenging, especially engaging non service users.[8] In addition, vulnerable groups at risk of poor SRHH are the least heard in society,[3] including BME, asylum seekers, sex workers, drug users, those with disabilities, homeless, YP and older people.

This article reports on a consultation exercise commissioned by London Sexual Health Programme (LSHP) to explore stakeholders’ views of PPE in SRHH services in London, aiming to identify barriers, challenges and best practice, to inform LSHP's work.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

Qualitative interviews were conducted with key stakeholders as a part of a consultation exercise, which also reviewed current policy and guidelines. This consultation informed the production of a resource to help NHS staff to engage patients/public. Further details of the larger project can be found in the report by Robinson and Lorenc et al[12] and the resource, available on the LSHP website.[13]

Volunteer interviewees were identified through sending an email invitation to lists of stakeholders (240 individuals) held by LSHP, including London teenage pregnancy leads, SH commissioning network, SH forum, contraceptive clinic contacts, and GUM lead clinicians. In addition, purposive sampling using snowballing and personal contacts ensured representation from patients/public, NHS staff (SH/reproductive/HIV), voluntary/community organizations (VCOs), and across levels (clinicians, managers, commissioners).

Interviews were conducted at the interviewee's workplace or a public place such as a café, and lasted between 20 and 90 min (average 30 min). Verbal consent was taken at the start of each interview. Interviews were semi-structured using a topic guide covering: experience of PPE in SRHH; challenges and barriers; perceived engagement of different groups; benefits and drivers; and information used and needed. Interviews were digitally recorded and were conducted, transcribed and analysed by AL. Framework analysis was used for interview data analysis,[14] using Atlas.ti software to code the data and Microsoft Excel to sort and map the themes. Framework analysis was chosen as it provides an explicit map of analysis and allows for searches within and between the different stakeholder groups. It is highly structured and systematic, consisting of five key stages: familiarization, coding, indexing, charting and mapping/interpreting.[14] Themes all emerged from the data rather than being a priori. At the end of analysis no new themes were apparent, indicating theoretical saturation.

Interviewees were emailed the seven key themes emerging from analysis for participation verification and to rank their importance for facilitating PPE. As this was an independent consultation exercise on behalf of LSHP, ethical approval was not required.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

Twenty-five qualitative interviews were conducted between November 2009 and March 2010, with 27 interviewees (see Table 1).

Table 1. Details of interviewees (= 27)
SectorNumber of interviewees
Non NHS
Voluntary and community organizations8
Researchers1
NHS Staff
Service provider (clinicians)5
Public health (PH)3
Clinical network managers/representatives3
Commissioner1
Health promotion specialist (HP)1
Members of the public
Patient representative (employed)3
Service user2

The benefits, drivers, results and methods of PPE are now discussed, followed by the seven key emergent themes.

Benefits, drivers and results of PPE

Many interviewees strongly believed in PPE, as demonstrated by the language used: ‘it's absolutely vital”’ (P13); ‘nothing… is a more powerful motivator for change’ (Clinician); ‘can't in any way be seen to be negative’ (Service User). The most commonly cited drivers (11 interviewees) were NHS policies and guidelines, although rarely specific to SRHH.

obviously, because of all the World Class Commissioning stuff we're being encouraged to do more and more of it [PPE] (P6, HP)

Improving patient satisfaction and service uptake, identifying ineffective services and reducing inequalities were perceived as key benefits in SRHH, through exploring barriers to use.

if they're not accessing services, [PPE can find out] why they're not and how services could be made more attractive to them. And that's, I think that's really important particularly around sexual health (P7, Researcher)

Cost reduction was mentioned by four interviewees. Identifying innovative ideas for services was important, especially challenging concepts based in theory, external targets, guidelines or professionals’ views. PPE was perceived as able to provide insights, disprove assumptions, expand horizons, break down power imbalances, return the focus to the patient (in the face of political/financial pressures):

the NHS is famous for, I use this word ideologic, for sort of working out in theory what's the good thing to do, but that might not be what works on the ground (P5, VCO)

Methods of PPE employed

PPE methods were often described as either tokenistic (e.g. consultation or audit) or meaningful (mystery shopping, community researchers). Questionnaires, which are standard practice/regular audit, were often not considered PPE and their limitations highlighted. Many preferred qualitative interviews.

questionnaires are useful but sometimes a bit two dimensional. You get a, a quantity of opinion…but not necessarily a quality opinion (P17, VCO)

Mystery shopping was reported, involving volunteers (often YP) posing as patients to evaluate a service. It usually only assesses booking appointments; one service unusually ‘mystery shopped’ the whole clinical examination. Training, terms and conditions and payment were seen as important.

Some projects actually involved users in designing PPE.

an innovative method of engagement which will include, um, well it will have a young people's group which will design and develop the questions, those questions will then be run on a number of platforms (P7, Researcher)

More meaningful engagement methods were thought to provide ownership, by empowering individuals: community researchers identifying participants and conducting semi-structured interviews; direct communication with decision makers such as policy makers, MPs, councillors and young mayors; and patient representatives, more common in HIV. Only two interviewees cited models of PPE.

me going into a barber shop and asking young African Caribbean men isn't going to be as effective as another African Caribbean young man going in … there are issue of local community intelligence which we don't have (P7, Researcher)

Flexibility was important, e.g. varying communication methods, using innovative or mixed methods. Communication included SMS messaging, internet and interactive methods for YP and non-written methods for BMEs. Online methods, including Facebook, websites, virtual focus groups, and Google advertising, were seen as convenient.

I think you've got to have a range of different methods, because different things work with different people (P17, VCO)

So it's basically being aware of ways, how people like to communicate, and establishing effective communication (P25, VCO)

The pros and cons of group approaches in SRHH were discussed. Groups were described as in-depth and qualitative; can be run separately for different social groups; provide information, social opportunities and support; model good behaviour; and are more participatory; and can be pre-formed. Cited drawbacks attributed to stigma were difficulties with recruitment and organizing regular groups.

We've tried to set up focus groups. Very, very difficult (P8, Clinician)

Key themes

Seven key themes emerged – presented in Table 2 in interviewees’ priority order (most important ranked 1, least important ranked 7 – median rank used here). Sixteen interviewees (59%) volunteered to take part in the prioritization exercise.

Table 2. Key themes
Median rank (1 most important)
Organizational commitment to patient and public engagement (PPE), i.e. PPE being built into policies; having dedicated staff and money for on-going, formal PPE1.0
Who is engaged – motivating patients/public, especially disadvantaged and ‘at risk’ communities rather than vocal/activists 3.0
Changing NHS philosophy, which doesn't currently focus on ‘customer’ service (compared to businesses)4.0
Informing patients/public about opportunities for PPE and what impact they can actually have 4.5
Using public awareness/education campaigns to engage patients, and tying in advocacy with PPE5.0 (mean 4.54)
Overcoming the barrier of stigma, especially for black and minority ethnic communities5.0 (mean 5.15)
Working with voluntary sector organizations5.0 (mean 5.17)

Organizational commitment to PPE

Organizational commitment was rated by interviewees as the most important theme in facilitating PPE, including organizations (PCT, commissioning body, clinic) providing dedicated budget, resources, time and training, embedding PPE in work structures, philosophies and strategies. Eight interviewees (mainly NHS staff) cited the need to fully integrate structured PPE into the service.

We shouldn't just expect ‘oh it will be done’, I think it does require somebody dedicated, not full time but maybe one day a week, somebody who's got it in their job description, who's going to actually push the work forward (P15, VCO)

Many interviewees cited needing practical information on ‘best practice’, to avoid ‘reinventing the wheel’, rather than relying on personal experience or colleagues (some used networks, websites or literature).

Who is engaged? Motivation, representation, priorities and the ‘volunteer type’

One of the main difficulties was patient motivation. Motivated patients were perceived as either certain ‘types’ (= 10), those who are ‘vocal’ and ‘shout loudest’, rarely representative of the YP or HIV patients.

we can rely on the great British tradition of volunteerism, but usually that means, again, you're back into certain socioeconomic groups (P4, Commissioner)

you get people who seem to be on every committee, you know, if you ask them what they do they virtually spend all their time going to different things, and they're not terribly helpful either because they're not really representative (P12, Patient Rep)

PPE in HIV was seen as more established, often including ‘activist’ groups. Whether PPE is more common and easier in HIV than other SH was debated (= 7) (see Fig. 1), with stigma a particular challenge. Six also discussed how new treatment had reduced desperation and therefore motivation.

people with HIV I think are now getting…involvement fatigue…they don't want to be asked anymore or go to meetings, they want to get on with their lives (Clinical Network)

Conversely, four explained how the chronic aspect of HIV engages people in their care and provided ‘partnership’ in treatment.

image

Figure 1. Patient and public engagement (PPE) in HIV.

Download figure to PowerPoint

There was also some debate on whether PPE should be separate for HIV and GUM, as HIV is part of SH, but also involves human rights, entitlements and disability, and has a different level of stigma.

Nine interviewees felt that YP were ‘enthusiastic’, ‘upfront’, ‘passionate’, ‘fired up’ and ‘have a lot to say’. They appeared easy to access, through schools, colleges, student unions, youth centres, youth councils and the You're Welcome initiative.[15] YP PPE included mystery/known shopping, collaborative service design, using Facebook, Twitter and texting, focus groups, representatives on boards and peer education.

The most frequently cited under-engaged group were BME, due to stigma, specifically Bangladeshi; Muslim; African (especially Sub Saharan/Horn of Africa/Afro Caribbean); Eastern European; South Asian.

There was debate about whether lesbian, gay, bisexual and transgender groups are more or less engaged. This may be due to classification of people into the ‘boxes’ of LBGT which was seen to create problems. Six interviewees highlighted that ethnic/religious barriers limit LBGT involvement, although five interviewees felt gay men are often proactive in PPE, as they are more ‘politicized’ and ‘articulate’.

African people, I'm afraid to say, ah tend to come with social conservatism, and I am thinking here of homophobia (P11, Patient Rep)

African gay men or MSM [men who sleep with men], who, for…reasons of different conceptualizations of gender and sexuality, don't respond to the question ‘Are you gay, straight, bi or are you a homo or hetero?’ (P11, Patient Rep)

Other under-represented groups were women (felt to be perhaps due to lack of public voice), people with disabilities (perhaps due to perceptions of SRHH issues as too sensitive or challenging) and older people (rarely mentioned).

Black minority ethnic women might also be a particular challenge because in some of the communities, not all of them, women aren't allowed to, kind of, take a public stance, and certainly not a public stance against men (P5, VCO)

PPE was seen as less common in reproductive health than HIV/SH (two interviewees).

Interviewees also recognized that patients have other commitments (eight cited this) and more urgent needs (three), particularly asylum seekers, those with lower socioeconomic status and those who are ill.

I think a lot of times there's been a naivety about patient, not so much public involvement, let's just say patient involvement …because I think most people who are ill just want to get better, they don't want to get political… I think there's been a bit of naïve idea that all NHS patients are just going to love to get involved! (P5, VCO)

someone going through the appalling, um, experience of the asylum process, you know, being shunted around the country or whatever that may be, they have other concerns, more immediate concerns (P11, Patient Rep)

This prioritization means that PPE needs to address an issue of importance to patients (10 cited, especially patients).

If I didn't think that a service was right then I would want to take steps to change it and obviously you'd go down those alleys. Or experiences that have happened to friends or family, that kind of thing. Off the top of my head that's literally, that would probably be the only [motivation to engage in PPE] (P20, Service User)

Many interviewees felt the general public and non-service users were underrepresented, and their inclusion necessary to understand the barriers to service access.

there is a big challenge in engaging potential service users…Why would you identify yourself as somebody who might want to use sexual health services in the future? (P23, Clinician)

in terms of people that we would particularly like to see more involved it's, sort of, communities who are more likely to be affected by poor sexual health and HIV, so, um, men who have sex with men; Black Africans; young people; people with HIV, um, so, you know, those are our sort of main target audience (P18, VCO)

Many interviewees recognized the need to actively involve and oversample at risk groups, mainly through existing community groups, public events and advertising on TV and newspapers. Snowballing (or ‘viral’ recruitment) (six interviewees) was powerful and cheap. Potential motivators included:

  • Making it easy for patients, by providing expenses, payment, qualification, transport (seven interviewees): ‘For someone like myself, I'd be more encouraged to do something if you get your lollipop or something [incentive/payment] than if not. But that might not necessarily be a good enough reason to do it’ (P20, Service User)
  • Make PPE activities fun, social, exciting or educational (seven interviewees): ‘But to be quite honest I don't know why anyone would want to sit through a strategy group meeting (laughs) – it's boring for us!’ (P23, Clinician)
  • Wanting to make a difference, give something back, or a sense of community (six interviewees): “I don't really get involved in ‘community’ things at all. At the moment, but I'm hoping the old responsibility and all that kind of thing comes up at one point and makes me go ‘oh I might get involved’” (P20, Service User)

Changing NHS philosophy – customer satisfaction?

The more generic issue of lack of valuing ‘customer’ (patient) opinion due to the NHS being publically funded was important. Three interviewees, particularly P4, an NHS commissioner, felt that the NHS needs to be more publically accountable. Four interviewees cited lack of NHS marketing skills as a barrier:

what motivates me…. [is that] we're supposed to be, we are a public service, we're supposed to be publically accountable (P4, Commissioner)

having patients on my side, or at least trying to drive my agenda from their agenda, gives me more credibility because one, they're the taxpayer and b, they're the guys on the receiving end of the service. (P4, Commissioner)

Three interviewees further elaborated on the NHS, as historically closed and ‘above’ engaging with patients.

the NHS is essentially a Stalinist type organization, it's very, whether locally or on a national level, depending on what you're trying to engage in, it is very centrally driven, from ivory towers like this one (P4, Commissioner)

nobody in any other setting would dream of establishing any sort of service without actually finding out what the customers want … but, public service and the health service in particular, has this ‘we'll provide it this way and we'll open our doors and you can use it if you want to’, historically that approach (P7, Researcher)

This shift in ethos often meant using PPE to influence policy, strategy, commissioning priorities and spending rather than just logistics and practicalities.

Patient information

Eight interviewees believed providing information on PPE and SRHH to patients/public reduces stigma, encourages PPE and gives it stronger impact, avoiding tokenism.

This included feeding back to patients/public the impact of their involvement, which could further motivate them (six interviewees, particularly from VCOs).

we'll send them a copy of what we've done so they can see what they have said and feed back to us has actually impacted the design…it's nice for them to see it's actually worthwhile (P6, HP)

Training for patients to prepare them for involvement was also seen to be crucial and provide an incentive for taking part. Formalized training, in the NHS especially, was rare. Examples included leadership training for HIV patient reps, training on NHS processes for patient reps on boards, training peer researchers in research methods.

if that small group [of patients] is well trained, well prepared, well resourced, er, I think they can have a big impact (P5, VCO)

Eight interviewees explained the importance of being clear and realistic about what is on offer and what can actually be changed.

I don't want to be telling the young people they have a certain amount of power if they don't actually have it (P19, VCO)

Public awareness/education: advocacy, activism and responsibility

Eight interviewees described both advocacy and PPE acting to ‘hear the patient's voice’. Activist groups such as user forums, campaigns and advocacy charities sometimes provided participants for PPE, as well as peers, role models or leaders, seen as empowering. PPE was also often part of self-management initiatives such as Positive Self Management Programme.[16]

I took two young people with me [to the House of Commons]…I said ‘could I, could the two young people actually speak?’ and they said ‘ok’ and I said ‘could they come up here, and sit up here at the head table with me?’, ‘ok’, so they came up and I just stopped talking. And let them speak. And by the end of that there was like everybody standing up and applauding, became those young people had reached the point, again, where they could tell stories, and I know that they had an influence on some of the MPs (P5, VCO)

PPE was often a community activity, such as outreach services, events, sex education in schools, and street health services for sex workers. It helped to build community networks, engage community leaders, obtain community knowledge/insights and engage people in health promotion.

it is about, sort of, basically reaching out and listening and engaging in conversation (P9, PH)

in many ways there is only one thing you can do and that is go to them (P1, Service User)

Stigma of sexual health

Nine interviewees strongly felt stigma of STIs/HIV was a barrier to PPE, illustrated by the quotes below. Stigma was often the main barrier, although ranked sixth most important out of seven, below organizational and motivation issues.

fear, stigma is what holds us back all the time (P12, Patient Rep)

stigma is definitely the number one [barrier] (P16, PH)

they don't want to put their hand up and say ‘actually yes I've been to the GUM clinic’ (P2, Clinician)

no one wants to be ‘the face of Herpes London’ (P10, Clinician)

In addition, the sporadic and transient nature of the clinical population was a common problem, as well as patients using non-local services to maintain confidentiality.

Seven interviewees felt that stigma is worse for ethnic minorities, where sexual health (or PPE) may not be acknowledged, making an ‘impenetrable barrier’ especially for PPE in HIV in Muslim and Asian groups.

it's getting through the cultural things. … in some cultures it's more difficult to come out, there isn't the listening, talking therapy concept. I had an Asian patient's mother the other day say ‘it doesn't happen in our community’, which, sort of, tends to sum up, you know what I mean, sort of, the barriers one has to, to cross (P12, Patient Rep)

Here locally we find that, um, African men particularly, they don't really, they don't participate and they don't want to acknowledge that they have sexual health needs (P23, Clinician)

Stigma made PPE recruitment difficult, especially for publically visible roles and group approaches, and limited ‘real’ involvement, but stigma came from views that are out-dated and inaccurate (seven interviewees):

I think there is like a cultural shift that's needed isn't it? You know, actually it's ok to be a sexual health advocate, it's ok to say, you know, ‘I've had gonorrhoea, I'm not proud of it’ (P21, Clinical Network)

about HIV, AIDS, there are preconceptions that are over 10 years old, people need to know that we've entered another ‘planet’, if you want, because you can now, with appropriate treatment, have nearly normal life expectancy… we need to engage and just talk and just break down stigma and barriers (P9, PH)

Clinicians and VCOs were more likely to cite confidentiality as a problem. Some interviewees felt that confidentiality is less of an issue than commonly believed:

I think some of the other challenges that people identify are not real challenges. I don't think actually people are bothered about exposing themselves as users of sexual health services, if they know that everyone else there is a user of the service (P23, Clinician)

Stigma was dealt with through anonymous and confidential methods of PPE, education programs and using preformed groups.

Collaboration – working with the voluntary sector

Collaboration with other organizations, especially VCOs, to access to ‘hard to reach groups’, the general public and ‘those at risk’ was common (11 interviewees). Using existing groups was quick and easy (with established membership base, rules, premises, meetings etc.) and helped to overcome sensitivity.

it is just such a sensitive issue …which is why we find it better to go into groups, you know, pre-formed groups and where the youth service worker or whoever is responsible for the group has already prepped them and they have the opportunity to duck out if they don't want to be involved (P6, HP)

Examples included churches/faith groups, youth clubs, football clubs, local councils, local media, colleges, universities and schools, LINKs, pharmacies, clinical units, charities, children's centres, and men's health groups. Ethnic-specific support groups were particularly common.

[we] worked together with the BME forum, and they have sort of some history of consulting with their groups, taking guidance from them (P9, PH)

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

The importance of PPE, recognized by a wide range of stakeholders in this study, echoes recent political and NHS drives.[4, 17] Findings also highlighted the benefits of PPE, in particular improving service uptake in SRHH,[9] identifying and responding to patients’ needs, improving patient satisfaction. PPE may also contribute to cost savings, improve good governance and clinical outcomes.[1, 2]

However, there is debate on the value of PPE, with little evidence of its impact, and patients perceived as having limited choice in many aspects of their care.[18] In addition a number of concerns about PPE have been expressed. Giving authority to the public can raise questions of what constitutes ‘expertise’, and the extent to which an individual can truly represent the views of groups of people[18-20] particularly given difficulties accessing certain groups. PPE can also have negative consequences, straining resources and staff.[18] PPE may be used as an excuse by decision-makers to shun their responsibility for spending public money.[3]

Conflicting views were identified on whether PPE in HIV was easier than reproductive/contraceptive services, although it did appear to be more advanced. This is due to a history of lobbying and advocacy in HIV and perhaps the overlap of reproductive health with education, social and economic factors and the multiplicity of contraceptive providers.[21] HIV PPE learning should now be extended to other areas of SRHH, in particular, exemplifying how PPE can be fully integrated at all levels, for example patient reps on management meetings, regular patient forums and employed patient reps.

Interviewees had diverse experience of PPE, but most recognized the huge range of PPE methods, from tokenistic to meaningful. Although quick, easy and cheap methods can be useful, interviewees identified the need for meaningful, empowering PPE, for individuals and communities. User-designed methods, especially peer researchers and participatory action research,[22] may be particularly useful, although challenging, for sexual health[23] and teenage pregnancy.[24] Peer education and positive role modelling may be useful to break down barriers.[15] Training and on-going support are essential to promote confidence for these more public roles. The need to provide information and empower participants was particularly emphasized by VCOs, suggesting that they can provide expertise in this area. Empowerment also encourages self-management and patient-centred healthcare, current NHS priorities[5] and can encourage engagement with other community issues, as in the new UK government ambition to build a ‘big society’.[17]

This study highlighted the need to ‘reach out’ to engage certain groups and motivate individuals in SRHH PPE, through targeting underrepresented groups, community outreach, and incentivization.[25] However, caution is needed when classifying people into ‘boxes’, for example ‘LBGT’, with which certain communities may not identify.[26] Community outreach through existing organizations experienced in engaging with marginalized groups,[27] and using peer researchers, is important for participation, but also raising awareness of SRHH and promoting local project development.[25] Communities also provide valuable information on appropriate methodology for sensitive issues.[28]

Interviewees, especially service users themselves, emphasized the need to address something important to participants, given the competing priorities in people's complex and busy lives. PPE should be easy for patients, with fiscal rewards.[24, 29] The PPE activity itself could offer opportunities such as a social gathering, needle exchange or counselling.[30, 31] One interviewee cited Maslow's hierarchy, suggesting that until peoples’ physiological and safety needs are satisfied they are unlikely to engage in more abstract/conceptual activities such as PPE. PPE is rarely a priority for the public, in particular SRHH, with services perceived as for ‘other people’, even by service users.[32] SRHH should therefore be advocated as a universal issue, intersecting with family, education and work.[26] It is likely that patients who are motivated to engage in PPE are a certain ‘type’ of person,[29] although concerns about patients/public not wanting to give their views may be unwarranted.[33]

Stigma was a recurring theme and undoubtedly a problem,[26] but not highly prioritized by interviewees, perhaps suggesting that it can be overcome. Stigma was most commonly mentioned regarding BME groups.[28] Methods to reduce the impact of sensitivity include explaining to participants, qualitative methods, ethnically matched and trained interviewers and post-project support.[28] Consensus on whether to use group approaches in SRHH is unclear.[34]

The main theme, the need for organizational commitment to PPE, particularly in the NHS, was substantiated by Giannakopoulou et al.[35] On a practical level, this involves actively engaging staff at all levels[25, 35] and dedicated budget and resources.[9] There is also a need for practical guidance on the methods, processes and standards for PPE in the NHS.[36] Official bodies may be reluctant to provide specific guidance to avoid being prescriptive and disempowering local providers, but the lack of knowledge or a clear remit means PPE may be ineffective.[36] Organizations need to consider producing policies and strategies to ensure PPE is consistent and standardized, not just one-off activities.

On a more theoretical note, many interviewees felt that NHS philosophy needs to change to be publically accountable, to create an ‘ethos’ of PPE,[3] on all levels.[9] Interestingly, the strongest views were expressed by an NHS commissioner. The need for ‘culture shift’ or political change of focus was a strong theme, for commissioners to be open to PPE challenging ideological, political and policy drivers. Recent reforms in government and NHS suggest this is happening.[4]

This study highlighted a number of practical issues for conducting SRHH PPE, many of which have been found by other projects. These include the need to be innovative,[37] provide training and information for participants,[24] using mixed methods,[25, 30] in-depth and personalized methods.[35]

There is also a need to share best practice. Few interviewees had learned from colleagues outside their organization or even their sector. This was attributed to lack of SRHH-specific networks, but is also likely affected by the lack of published research on PPE in SRHH, particularly on process rather than findings. The NHS may also need to maximize learning from and collaborating with VCOs.

Limitations and scope of study

The study focussed on London; findings will vary geographically given the unique sociodemographics and prioritization regarding sexual health. Although volunteers for interviews were quick to come forward and appeared highly interested, the volunteer sample may have been biased, and skewed towards positive feedback. Although sampling did include purposive methods to capture all stakeholder groups, the diversity of groups may have limited representation. In particular, patients/members of the public were underrepresented as there were very few on LSHP lists. Participant validation was a useful tool, however, some respondents found the rating exercise difficult. There is a need for future studies to include a wider range of stakeholders, in particular, those less interested in or with negative views about PPE. Future research could also include the impact of the outcomes of PPE initiatives and their costs and sustainability.

Conclusions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

There is a need for reproductive and SH services to catch up with HIV in terms of PPE. Meaningful engagement which gives patients empowerment and ownership of services and engages communities is crucial, and will help to achieve a ‘big society’ and self-management of health. Outreach to communities at risk and underrepresented groups is needed, particularly BME and non-service users, through collaborating with VCOs, providing incentives, and actively targeting underrepresented groups. Organizations need to demonstrate a consistent and real commitment to PPE, both on a practical and conceptual level.

This study has identified barriers to PPE in SRHH, but has also found evidence of tremendous will, belief in and commitment to PPE in SRHH, as well as numerous examples of excellent projects striving to overcome these barriers. With further effort to use creative methods and embed PPE in organizations, PPE can be used to create innovative, high quality SRHH services and save costs by improving access, as well as tackling stigma through community engagement.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

We are extremely grateful to everyone who participated in this study, or helped with recruitment, for their unprecedented enthusiasm.

Source of funding

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References

This work was funded by the London Sexual Health Programme, in the London Specialised Commissioning Group, London, UK

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusions
  8. Acknowledgements
  9. Source of funding
  10. Conflict of interest
  11. References
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