Erasing the stain: Challenging the stigma of opioid substitution treatment. Findings from a stakeholder workshop

Posted on October 4, 2021October 4, 2021 by lindsey.pike

Author: Vicky Carlisle. Twitter: @Vic_Carlisle, Email: vicky.carlisle@bristol.ac.uk

On Wednesday 7th July 2021, I brought together key stakeholders with an interest in improving opioid substitution treatment (OST) from across the UK. This included people with lived experience, Public Health England staff, local authority public health practitioners, treatment service leads, pharmacists and academics. We discussed the findings of my recently completed PhD, and together we considered the next stages of developing an intervention to improve OST.

A summary of my research

For those not familiar with the topic, OST refers to the treatment of opioid dependency with either methadone or buprenorphine (alongside psychosocial support). Through my research, I wanted to understand what the key facilitators and barriers are to people ‘recovering’ in OST. To do this, I drew on both quantitative and qualitative methodologies. I found that loneliness, isolation and experiences of trauma and stigma were key barriers to recovery; whereas positive social support, discovering a sense of purpose and continuity of care were valuable facilitators.

Importantly, some factors appear to act as both facilitators and barriers to recovery in OST. For instance, I found that some service users used isolation as a form of self-protection (to shield themselves from negative influences), however this often left them feeling lonely and disconnected from the potential benefits offered by developing more positive social support networks.

Undoubtedly, the strongest barrier to recovery was stigma. Service users told me that they experience stigma from a range of sources, including from family and friends, healthcare professionals and members of the wider community. I found similar patterns in the literature review that I carried out (Carlisle et al, 2020). Stigma is like a stain where an individuals’ entire identity is defined by a single, negative attribute. In the case of OST, individuals may possess overlapping stigmatised identities of ‘OST service user’, ‘drug user’ and ‘injecting drug user’. Some will be further stigmatised due to experiencing homelessness, being HIV or Hepatitis C positive or through involvement in sex-work.

“I found that loneliness, isolation and experiences of trauma and stigma were key barriers to recovery”

Community pharmacies are one environment where service users report experiencing a great deal of stigma. Unlike customers collecting other prescriptions, many OST service users receive their medications (methadone/buprenorphine) through an arrangement known as ‘supervised consumption’. This means they must be observed taking their medication by a pharmacist to ensure that it is not diverted to others. This is often conducted in full view of other customers, despite guidelines which recommend that this takes place in a private room or screened area. This leaves OST service users open to the scrutiny of the ‘public gaze’.

My findings have several implications in relation to stigma. Firstly, OST service users receive poorer care than other members of society in healthcare settings, which may result in them avoiding seeking help from drug treatment and for other health conditions. Secondly, stigmatising OST service users makes community re-integration extremely challenging and this has been directly linked to individuals returning to drug using networks as it is somewhere they feel a sense of belonging. The ultimate impact of being repeatedly exposed to stigma is an internalisation of these judgements, resulting in feelings of shame and worthlessness – again impacting on individuals’ ability to seek help and develop supportive new relationships with others.

Figure 1: Key facilitators and barriers to recovery, retention and completion in OST at each level of the socioecological model. Stigma is present at every level of the system.

What we discussed during the workshop

Being able to present these findings to key stakeholders was a real highlight of my PhD work; it’s not often that you have the ear of so many invested and engaged individuals in one ‘room’ (albeit a Zoom room!). The findings of my PhD chimed closely with the experiences of those in the room and would be further reflected the next day when Dame Carol Black’s Review of Drugs Part 2 was published, which made specific reference to stigma.

After I presented a short overview of my PhD findings, attendees spent time in small groups discussing how we might address OST stigma at each level of the socioecological system (see figure 1, above). A common thread that ran through each of the groups’ discussions was the importance of embedding interventions within trauma-informed frameworks. Attendees felt that increasing others’ understanding of the impact of trauma and ‘adverse childhood experiences’ (ACEs) may be a key mechanism by which to reduce stigma towards OST service users.

Indeed, a recent study found promising results in relation to this – that increasing the public’s awareness of the role of ACEs in substance use reduced stigmatising attitudes towards people who use drugs (Sumnall et al, 2021). Workshop attendees suggested that this outcome could be achieved through trauma-informed training of all individuals who might work with OST service users, such as pharmacists, the police and medical professionals, as well as those who work in healthcare settings, such as receptionists.

At the individual level there was a discussion about the way that stigma trickles down the socioecological system, resulting in self-stigma or internalised stigma. People felt that the best way to reduce this was to tackle stigma higher upstream first.

When thinking about reducing stigma in everyday inter-personal interactions, people highlighted the importance of using non-stigmatising language. For those who are interested (and I think we all should be!) the Scottish Drug Forum has published an excellent guide here.

Some excellent suggestions were made for reducing stigma that individuals experience in organisations such as pharmacies, hospitals and other settings. This is something that Dr Jenny Scott and I discussed in a recent article for the Pharmaceutical Journal (Scott & Carlisle, 2021). One attendee suggested the introduction of positive role-models within organisations who could be an exemplar of positive behaviour for others (a ‘stigma champion’ perhaps?). Training was identified as a key mechanism through which stigma could be reduced in organisations, including through exposure to people who use drugs (PWUD) and OST service users during training programmes. It was stressed however, that this should be carefully managed to ensure that a range of voices are presented and not just ones supporting dominant discourses around abstinence-based recovery.

Suggestions for improving community integration included increasing access to volunteering opportunities – something that people felt has been impacted by reduced funding to recovery services in recent years. It was also suggested that community and faith leaders could be a potential target for education around reducing stigma and understanding the impact of trauma, as these individuals may be best placed to have conversations about stigma with members of their communities.

Finally, there were some thoughtful discussions around the best way to influence policy to reduce stigma. The importance of showing policymakers the evidence-base from previous successful strategies was highlighted. Something that resulted in a lively debate was the issue of supervised consumption with arguments both for and against (this is also relevant at the organisational level). The group summarised that whilst diversion of medications was a risk for some, a blanket approach to supervised consumption and/or daily collections exposes individuals to stigma in the pharmacy, which leaves individuals vulnerable to dropping out of treatment. It was pointed out that supervised consumption policies were quickly relaxed at the start of Covid-19 restrictions – something that appears to have been done safely and with benefits to service users. It was also highlighted that supervised consumption in OST is inherently stigmatising, as users of other addictive drugs with overdose potential, such as other prescribed opioids and benzodiazepines, are not subjected to the same regulations. This sends a clear message to OST service users that they cannot be trusted. Other key suggestions were:

Communicating with CQCs and Royal Colleges, who may be particularly interested in understanding how people are treated in their services.
Drawing on existing stigma policies from other arenas e.g. mental health.
Highlighting the fiscal benefits of reducing stigma to key decision makers.
Tapping into plans for the new Police and Crime Commissioners, who have a trauma sub-group.
Linking into work with ADDER areas, which may provide the evidence for ‘what works’.

What next?

I am now planning to apply for further funding to develop an intervention to reduce organisational stigma towards OST service users. The involvement of service users and other key stakeholders will be crucial in every step of that process, so I will be putting together a steering group as well as seeking out collaborations with academics internationally that have expertise and an interest in this area. I was really pleased to see that Dame Carol Black’s second report makes some concrete recommendations around reducing stigma towards people who use drugs. I hope therefore to be able to work with the current momentum to make OST safer and more attractive to those whose lives depend on it.

I’d like to extend my gratitude to all of the attendees at the workshop and to Bristol’s Drug and Alcohol Health Integration Team (HIT) for supporting this event. If you are an individual with lived experience of OST, an academic, or any other stakeholder working in this area and would like to be involved with future developments, please get in touch with me at vicky.carlisle@bristol.ac.uk or find me on Twitter at @Vic_Carlisle.

References

Carlisle, V., Maynard, O., Padmanathan, P., Hickman, M., Thomas, K. H., & Kesten, J. (2020, September 7). Factors influencing recovery in opioid substitution treatment: a systematic review and thematic synthesis. https://doi.org/10.31234/osf.io/f6c3p

Scott, J & Carlisle, V (2021). A pharmacy resolution for 2021: let’s improve the way patients with addiction are treated. The Pharmaceutical Journal. https://pharmaceutical-journal.com/article/opinion/a-pharmacy-resolution-for-2021-lets-improve-the-way-patients-with-addiction-are-treated

Sumnall, H. R., Hamilton, I., Atkinson, A. M., Montgomery, C., & Gage, S. H. (2021). Representation of adverse childhood experiences is associated with lower public stigma towards people who use drugs: an exploratory experimental study. Drugs: Education, Prevention and Policy, 28(3), 227-239. https://doi.org/10.1080/09687637.2020.1820450

This blog was originally posted on the TARG blog on the 1 October 2021.

Using evidence to advise public health decision makers: an insider’s view

Posted on December 18, 2019December 18, 2019 by lindsey.pike

This blog post reviews a recent seminar hosted by the MRC IEU, PolicyBristol and the Bristol Population Health Science Institute.

Public health is one of the most contested policy areas. It brings together ethical and political issues and evidence on what works, and affects us all as citizens.

Researchers produce evidence and decision-makers receive advice – but how does evidence become advice and who are the players who take research findings and present advice to politicians and budget-holders?

We were pleased to welcome a diverse audience of around 75 multidisciplinary academics, policymakers and practitioners to hear our seminar speakers give a range of insider perspectives on linking academic research with national and local decisions on what to choose, fund and implement.

In this blog post we summarise the seminar, including links to the slides and event recording.

Seminar audience — Seminar attendees in the Coutts lecture theatre. Image credit: Julio Hermosilla Elgueta

Chair David Buck from The King’s Fund opened the event, highlighting the importance of conversations between different sectors of the evidence landscape, and of local decision-making in this context.

‘The art of giving advice’

The session was kicked off by Richard Gleave, Deputy Chief Executive, Public Health England, who is also undertaking a PhD on how evidence is used in public health policy decision making.

His presentation ‘Crossing boundaries – undertaking knowledge informed public health’ set the context, observing that most academic teams – from microbiology labs to mental health researchers – aim to improve policy and practice; but ‘the art of giving advice is as important and challenging as the skill required to review the evidence’.

Richard then introduced a range of provocations and stereotypes about how the policy decision making process can be framed.

Citing Dr Kathryn Oliver, he encouraged attendees to challenge the idea that there’s an ‘evidence gap’ to be crossed, and instead focus on doing good working together to improve the public’s health.

Giving an example of the Institute for Government’s analysis of how the smoking ban was enacted, he noted the role of a small number of influential groups and individuals in securing a total ban in 2007. He encouraged actively crossing the boundaries between academia, policy and practice, and working with boundary organisations and influencers as part of this process.

‘Partnerships between science and society’

Professor Isabel Oliver gave a second national perspective.

Speaking as a research-active Director of Research, Translation and Innovation and Deputy Director of the National Infection Service, she suggested that ‘Partnerships between Science and Society’ are the key to evidence based public health.

She questioned why is it when we have such an abundance of research, we still don’t have the evidence we need? And why does it take so long to implement research findings? She argued that a key issue here is relevance; how relevant is the research being produced, especially to current policy priorities?

Isabel outlined challenges including:

Needing evidence quickly in response to public health emergencies, and not being able to access it, for example how to bottle-feed babies during flooding crises, or whether to close schools during flu pandemics
Mismatched policy and research priorities; e.g. policy needing evidence on the impact of advertising on childhood obesity, but research focusing on the genetics of obesity
The (unhelpful) prevalence of ‘more research needed’ as a conclusion, and knowing when the evidence is sufficient to make a decision
A need to develop trust between stakeholders, made more challenging by the frequency of policy colleagues moving roles.

She also questioned whether the paradigm of evidence-based medicine works for complex issues such as public health or environmental policy.

Isabel concluded with some observations; that broader and more collaborative research questions that address the real issues are needed; and collaborating with a broad range of stakeholders, including industry and finance, should not be discounted.

She finished by reiterating a call for public health advice that is relevant, and responds to a policy ‘window’ being open.

Seminar speakers L-R: Dr Olivia Maynard, Richard Gleave, Professor Isabel Oliver and Christina Gray. Image credit: Julio Hermosilla Elgueta

‘Local perspective’

Christina Gray, Director of Public Health at Bristol City Council gave the local view, providing a helpful explanation of her role and the process of decision making within a local authority.

She outlined three key principles:

The democratic principle; elected members are ‘the council’; officers (including her role) provide advice. Local authorities are close to their people and are publicly accountable. Their decisions are formally scrutinised and need to be justified, and resource allocation is a key – and stark – challenge, especially in the context of austerity.
The narrative principle: how the society that the authority represents holds multiple legitimate (and competing or conflicting) perspectives and realities, which all need to be considered.
The (social) scientific principle; the development of human knowledge in a systematic way – which is then shared into the democratic process, as one of a range of narratives.

Christina outlined a case study example of an initiative on period dignity which Bristol City Council is leading as part of Bristol’s One City Plan, and how the evidence base for the programme was located and used. She posed the question of what evidence matters locally, and suggested that evidence of impact, economic evidence, and retrospective evidence that demonstrates whether what has been done works, in order to build on it, are the most helpful. To close, Christina highlighted the importance of being ‘paradigm literate’ in order to navigate the complexity of public health decision making.

Academic perspective

Our final speaker, Dr Olivia Maynard, gave an academic perspective on how to advise decision makers.

Focusing on practical tips, she outlined her own work on tobacco, smoking, e-cigarettes, alcohol and other drugs and how she has engaged with various opportunities to work with policymakers.

Starting with a clear case for doing the work (it’s important, it’s interesting, to create impact), she went on to outline methods of engagement:

Proactively presenting your work; introduce yourself to policymakers interested in your area such as MPs, Peers, APPGs, subject specialists in parliamentary research services, advocacy groups, and PolicyBristol; review Hansard and Early Day Motions; get involved in parliamentary events
Respond to calls for evidence (University of Bristol researchers can find curated opportunities via the PolicyBristol PolicyScan)
Work directly with policymakers, for example via Policy Fellowships (for example with POST)

Olivia outlined some reflections around the differences between academia and policymaking.

Timelines for action is one, but she also used the changes towards plain packaging as an example to note that the policymaking process can span numerous years, presenting many opportunities for intervention.

She referred back to Christina’s point about ‘multiple competing realities’ to highlight that evidence is one of many factors to consider in policymaking.

She also encouraged academics to challenge ‘imposter syndrome’, by emphasising ‘you are more of an expert than you think you are’, and needing to make yourself known to be offered opportunities.

Where next?

Chair David Buck highlighted a number of themes running throughout the presentations including recognising the paradigms used by different stakeholders; questioning what counts as evidence, and being able to provide advice from an uncertain evidence base; and what these themes mean for all of us (and how willing are we to act on these reflections?)

The seminar concluded with a facilitated Q&A session spanning topics such as:

Should all research which influences policy be coproduced with user groups and policymakers?
What kind of ‘payback’ do stakeholder organisations need for their involvement in research projects?
How should researchers develop the skills needed to cross boundaries?
What funding is available for policy relevant research?
How can we make our evidence ‘stand out’?
Should academics have a responsibility to critique policy?

The seminar started numerous conversations which we hope to continue.

Chair David Buck facilitates our Q&A. Image credit: Julio Hermosilla Elgueta

Access the slides:

1. Richard Gleave Crossing boundaries – undertaking knowledge informed public health

2. Isabel Oliver Partnerships between science and society

3. Christina Gray Evidence into practice

4. Olivia Maynard An academic’s perspective

View a recording of the event on the IEU’s YouTube channel: https://www.youtube.com/watch?v=-ew-RvzV-D0

Contact lindsey.pike@bristol.ac.uk if you’d like to hear about future events.

Institutionalising preventive health: what are the key issues for Public Health England?

Posted on July 30, 2019 by lindsey.pike

Professor Paul Cairney, University of Stirling

Dr John Boswell, University of Southampton

Richard Gleave, Deputy Chief Executive and Chief Operating Officer, Public Health England

Dr Kathryn Oliver, London School of Hygiene and Tropical Medicine

The Green Paper on preventing ill health was published earlier this week, and many have criticised that proposals do not go far enough. Our guest blog explores some of the challenges that Public Health England face in providing evidence-informed advice. Read on to discover the reflections from a recent workshop on using evidence to influence local and national strategy and their implications for academic engagement with policymakers.

On the 12^th June, at the invitation of Richard Gleave, Professor Paul Cairney and Dr John Boswell led a discussion on ‘institutionalising’ preventive health with senior members of Public Health England (PHE).

It follows a similar event in Scotland, to inform the development of Public Health Scotland, and the PHE event enjoyed contributions from key members of NHS Health Scotland.

Cairney and Boswell drew on their published work – co-authored with Dr Kathryn Oliver and Dr Emily St Denny (University of Stirling) – to examine the role of evidence in policy and the lessons from comparable experiences in other public health agencies (in England, New Zealand and Australia).

This post summarises their presentation and reflections from the workshop (gathered using the Chatham House rule).

The Academic Argument

Governments face two major issues when they try to improve population health and reduce health inequalities:

Should they ‘mainstream’ policies – to help prevent ill health and reduce health inequalities – across government and/ or maintain a dedicated government agency?
Should an agency ‘speak truth to power’ and seek a high profile to set the policy agenda?

Our research provides three messages to inform policy and practice:

When governments have tried to mainstream ‘preventive’ policies, they have always struggled to explain what prevention means and reform services to make them more preventive than reactive.
Public health agencies could set a clearer and more ambitious policy agenda. However, successful agencies keep a low profile and make realistic demands for policy change. In the short term, they measure success according to their own survival and their ability to maintain the positive attention of policymakers.
Advocates of policy change often describe ‘evidence based policy’ as the answer. However, a comparison between (a) specific tobacco policy change and (b) very general prevention policy shows that the latter’s ambiguity hinders the use of evidence for policy. Governments use three different models of evidence-informed policy. These models are internally consistent but they draw on assumptions and practices that are difficult to mix and match. Effective evidence use requires clear aims driven by political choice.

Overall, they warn against treating any response – (a) the idiom ‘prevention is better than cure’, (b) setting up a public health agency, or (c) seeking ‘evidence based policy’ – as a magic bullet.

Major public health changes require policymakers to define their aims, and agencies to endure long enough to influence policy and encourage the consistent use of models of evidence-informed policy. To do so, they may need to act like prevention ninjas, operating quietly and out of the public spotlight, rather than seeking confrontation and speaking truth to power.

Image By Takver from Australia [CC BY-SA 2.0 (https://creativecommons.org/licenses/by-sa/2.0)], via Wikime

The Workshop Discussion

The workshop discussion highlighted an impressive level of agreement between the key messages of the presentation and the feedback from most members of the PHE audience.

One aspect of this agreement was predictable, since Boswell et al’s article describes PHE as a relative success story and bases its analysis of prevention ‘ninjas’ on interviews with PHE staff.

However, this strategy is subject to frequent criticism. PHE has to manage the way it communicates with multiple audiences, which is a challenge in itself. One key audience is a public health profession in which most people see their role as to provoke public debate, shine a light on corporate practices (contributing to the ‘commercial determinants of health’), and criticise government inaction. In contrast, PHE often seeks to ensure that quick wins are not lost, must engage with a range of affected interests, and uses quiet diplomacy to help maintain productive relationships with senior policymakers. Four descriptions of this difference in outlook and practice stood out:

Walking the line. Many PHE staff gauge how well they are doing in relation to the criticism they receive. Put crudely, they may be doing well politically if they are criticised equally by proponents of public health intervention and vocal opponents of the ‘nanny state’.
Building and maintaining relationships. PHE staff recognise the benefit of following the rules of the game within government, which include not complaining too loudly in public if things do not go your way, expressing appreciation (or at least a recognition of policy progress) if they do, and being a team player with good interpersonal skills rather than simply an uncompromising advocate for a cause. This approach may be taken for granted by interest groups, but tricky for public health researchers who seek a sense of critical detachment from policymakers.
Managing expectations. PHE staff recognise the need to prioritise their requirements from government. Phrases such as ‘health in all policies’ often suggest the need to identify a huge number of crucial, and connected, policy changes. However, a more politically feasible strategy is to identify a small number of discrete priorities on which to focus intensely.
Linking national and local. PHE staff who work closely with local government, the local NHS, and other partners, described how they can find it challenging to link ‘place-based’ and ‘national policy area’ perspectives. Local politics are different from national politics, though equally important in implementation and practice.

There was also high agreement on how to understand the idea of ‘evidence based’ or ‘evidence informed’ policymaking (EBPM). Most aspects of EBPM are not really about ‘the evidence’. Policy studies often suggest that, to improve evidence use requires advocates to:

find out where the action is, and learn the rules and language of debate within key policymaking venues, and
engage routinely with policymakers, to help them understand their audience, build up trust based on an image of scientific credibility and personal reliability, and know when to exploit temporary opportunities to propose policy solutions.
To this we can add the importance of organisational morale and a common sense of purpose, to help PHE staff operate effectively while facing unusually high levels of external scrutiny and criticism. PHE staff are in the unusual position of being (a) part of the meetings with ministers and national leaders, and (b) active at the front-line with professionals and key publics.

In other words, political science-informed policy studies, and workshop discussions, highlighted the need for evidence advocates to accept that they are political actors seeking to win policy arguments, not objective scientists simply seeking the truth. Scientific evidence matters, but only if its advocates have the political skills to know how to communicate and when to act.

Although there was high agreement, there was also high recognition of the value of internal reflection and external challenge. In that context, one sobering point is that, although PHE may be relatively successful now (it has endured for some time), we know that government agencies are vulnerable to disinvestment and major reform. This vulnerability underpins the need for PHE staff to recognise political reality when they pursue evidence-informed policy change. Put bluntly, they often have to strike a balance between two competing pressures – being politically effective or insisting on occupying the moral high ground – rather than assuming that the latter always helps the former.

This blog post was originally published on the PolicyBristol blog.