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

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.

Underestimation of Drug Use: A Perennial Problem with Implications for Policy

by Olivia Maynard

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Photo by Louie Castro-Garcia on Unsplash

In a paper recently published in the journal Addiction, Hannah Charles and colleagues suggest that the prevalence of illicit drug use among 23-25 year olds in a Bristol-based birth cohort (ALSPAC) is over twice that reported in the Crime Survey for England and Wales (CSEW). The team propose that these figures reflect under-reporting in the CSEW, although they note that they may reflect higher levels of illicit drug use in Bristol. Here I present some preliminary data supporting their view that the CSEW underestimates illicit drug use.

In March 2020, I recruited 683 UK university students to participate in a short survey on drug use via the online survey platform Prolific which has been shown to produce reliable data. I recruited only students aged 18 to 24 years who reported using alcohol in the past 30 days, and participants reported whether they had used any of MDMA/ecstasy, cocaine or cannabis in the past two years.

Table 1. Prevalence of self-reported illicit drug use across three surveys of young people in the UK

University
students
via ProlificAged 18-24
Bristol, ALSPAC

Aged 23-25

CSEW

Aged 23-25

2 years 1 year Lifetime 1 year Lifetime
Any illicit drug usea 52.7 (360) 36.7 62.8 16.4 40.6
Cannabis 50.2 (343) 29.2 60.5 13.8 37.3
MDMA/ecstasy/amphetaminesb 23.3 (159) 17.0 32.9 3.6 11.1
Cocaine 21.1 (144) 19.6 30.8 4.8 13.9

Notes: Values represent percentage of participants (number of participants). Percentages for CSEW and ALSPAC are taken from Charles et al (1) and are weighted percentages.
a ‘Any illicit drug use’ refers only to the illicit drugs assessed in the respective surveys (only cannabis, MDMA and cocaine in our survey), more drugs in ALSPAC and CSEW – see Charles et al (1).
Our Prolific survey asked about ‘MDMA / ecstasy’ use, ALSPAC categorised ecstasy/MDMA use along with other ‘amphetamine’ use and CSEW asked about ‘ecstasy’ use.

Over half of my sample reported using at least one of cannabis, cocaine or MDMA in the past two years (Table 1). This is markedly higher than the CSEW’s estimates of either past year or lifetime use, and more in line with those reported in ALSPAC. Comparing across drugs, past two-year use of the three drugs is higher in my survey than either past year or lifetime use in the CSEW, and higher than past year, but lower than lifetime use in ALSPAC. Perhaps of more interest than ever use of the drugs over the past two years, I also examined the combinations of drugs students in my survey were using (Table 2). I find that the majority of students who report using illicit drugs have only used cannabis in the past two years (25% of all students), although the second largest group (15%) have used all three of cannabis, MDMA and cocaine.

Table 2. Prevalence of self-reported illicit drug among UK university students

Qualtrics survey of university students (past two years)
All
(n=683)
Female
(n=336)
Male
(n=312)
Other
(n=35)
Illicit drug use 
Cannabis 50.2 (343) 48.5 (163) 53.5 (167) 37.1 (13)
MDMA / ecstasy 23.3 (159) 19.3 (65) 29.2 (91) 8.6 (3)
Cocaine 21.1 (144) 17.6 (59) 26 (81) 11.4 (4)
Illicit drug use profiles
Alcohol only (no illicit drug use) 47.3 (323) 48.2 (162) 44.6 (139) 62.9 (22)
Any illicit drug usea 52.7 (360) 51.8 (174) 55.4 (173) 37.1 (13)
Cannabis only 24.5 (167) 27.4 (92) 21.5 (67) 22.9 (8)
Cannabis + Cocaine + MDMA 15.4 (105) 11.3 (38) 20.8 (65) 5.7 (2)
Cannabis + MDMA 6.3 (43) 6 (20) 7.1 (22) 2.9 (1)
Cannabis + Cocaine 4.1 (28) 3.9 (13) 4.2 (13) 5.7 (2)
Cocaine only 0.9 (6) 1.2 (4) 0.6 (2) 0 (0)
MDMA only 0.9 (6) 0.9 (3) 1 (3) 0 (0)
Cocaine + MDMA 0.7 (5) 1.2 (4) 0.3 (1) 0 (0)

Notes: Values represent percentage of participants (number of participants).
‘Illicit drug use’ refers to participants reporting any use of the three drugs in the past two years.
‘Illicit drug use profiles’ refers to the combinations of drugs participants report using in the past two years.
a ‘Any illicit drug use’ refers only to use of cannabis, MDMA and cocaine.

There are some important differences between my sample and both the CSEW and ALSPAC samples. Some differences may mean that my figures are overestimates, including sampling university students who are more affluent than the general population (although drug use is not necessarily higher among students than non-students) and only including those who reported drinking alcohol (although according to the study authors, over 95% of the ALSPAC participants report past year drinking). Other differences may mean my figures are underestimates, including only asking about use of three drugs (thereby underestimating ‘any illicit drug use’), and the younger average age of my sample. I also report on past two-year use, rather than either lifetime or past year use as per CSEW and ALSPAC. Given these differences, I would like to run a larger, more representative sample on the Prolific platform (Prolific allows researchers to recruit a sample which is representative of the general population), to get an estimate of illicit drug use which is more comparable to ALSPAC and CSEW.

Despite these differences, my data support those reported by Charles and colleagues. Indeed, I find it unsurprising that illicit drug use is under-reported in the Home Office’s CSEW. The validity of self-reports for sensitive issues has long been a concern. Over-reporting of illicit drug use is not considered to be a concern and numerous methods have been developed for preventing under-reporting (see a 1997 NIDA report on this issue, as well as more recent techniques for estimating prevalence of use such as the crosswise method). It is important to consider the context in which surveys are administered, including participants’ perception of who is asking the questions and for what reason. It seems that if drug use is asked about in a research context, (e.g., with a clear research objective, informed consent and no possibility of repercussions), the validity of responses may be higher than when questions are asked by organisations that are perceived to be involved in the punishment of people who use drugs (e.g., governments, universities).

While the CSEW recognises that it does not reliably measure problematic drug use, my data and that of Charles and colleagues provide evidence that CSEW’s claim that it is a ‘good measure of recreational drug use’ may be wrong. Although it may be convenient to believe that only a small subset of the population uses illicit drugs, accurate information may galvanise policy makers (both nationally and locally, including at universities) into developing drugs policies that reflect reality and which support, rather than criminalise, the large proportion of the population who choose to use drugs. Indeed, this is what we’re doing at the University of Bristol, where it has been accepted that drug use is relatively common among our students and we’re providing support and education to those students who need it.

 

This blog posted was originally posted on the Tobacco and Alcohol Research Group blog

Using genetics to understand the relationship between young people’s health and educational outcomes

Amanda Hughes, Kaitlin H. Wade, Matt Dickson, Frances Rice, Alisha Davies, Neil M. Davies & Laura D. Howe

Follow Amanda, Kaitlin, Matt, Alisha, Neil and Laura on twitter

Young people with health problems tend to do less well in school than other students, but it has never been clear why. One explanation is that health problems directly damage educational outcomes. In that case, policymakers aiming to raise educational standards might want to focus first on health as a means of improving attainment.

But are there other explanations? What if falling behind in school can affect health, for instance causing depression? Also, many health problems are more common among children from less advantaged backgrounds – for example, from families with fewer financial resources, or whose parents are themselves unwell. These children also tend to do less well in school, for reasons that may have nothing to do with their own health. How do we know if their health, or their circumstances, are affecting attainment?

It is also unclear if health matters equally for education at all points in development, or particularly in certain school years. Establishing how much health does impact learning, when, and through which mechanisms, would better equip policymakers to improve educational outcomes.

Photo by Edvin Johansson on Unsplash

Using genetic data helps us understand causality

Genetic data can help us answer these questions. Crucially, experiences like family financial difficulties, which might influence both a young person’s health and their learning, cannot change their genes. So, if young people genetically inclined to have asthma are more absent from school, or do less well in their GCSEs, that would strongly suggest an impact of asthma itself. Similarly, while falling behind in school might well trigger depression, it cannot change a person’s genetic propensity for depression. So, a connection between genetic propensity for depression and worse educational outcomes supports an impact of depression itself. This approach, of harnessing genetic information to better understand causal processes, is known as Mendelian randomization.

To find out more, we investigated links between

  • health conditions in childhood and adolescence
  • school absence in years 10 & 11
  • and GCSE results.

We used data from 6113 children born in the Bristol area in 1991-1992. All were participants of the Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s. We focused on six different aspects of health: asthma, migraines, body mass index (BMI), and symptoms of depression, of attention-deficit hyperactivity disorder (ADHD), and of autism spectrum disorder (ASD). These conditions, though diverse, have two important things in common: they affect substantial numbers of young people, and they are at least in part influenced by genetics.

Alongside questionnaire data and education records, we also analysed genetic information from participants’ blood samples. From this information, we were able to calculate for each young person a summary score of genetic propensity for experiencing migraines, ADHD, depression, ASD, and for having a higher BMI.

We used these scores to predict the health conditions, rather than relying just on reports from questionnaire data. In this way, we avoided bias due to the impact of the young people’s circumstances, or of their education on their health rather than vice versa.

Even a small increase in school absence predicted worse GCSEs.

We found that, for each extra day per year of school missed in year 10 or 11, a child’s total GCSE points from their best 8 subjects was a bit less than half (0.43) of a grade lower. Higher BMI was related to increased school absence & lower GCSE grades.

Using the genetic approach, we found that young people genetically predisposed towards a higher BMI were more often absent from school, and they did less well in their GCSEs. A standard-deviation increase* in BMI corresponded to 9% more school absence, and GCSEs around 1/3 grade lower in every subject. Together, these results indicate that increased school absence may be one mechanism by which being heavier could negatively impact learning. However, in other analyses, we found a substantial part of the BMI-GCSEs link was not explained by school absence. It’s unclear which other mechanisms are at play here, but work by other researchers has suggested that weight-related bullying, and negative effects of being heavier on young people’s self-esteem, could interfere with learning.

*equivalent to the difference between the median (50th percentile) in population and the 84th percentile of the population

Diagram showing the pathways through which higher BMI could lead to lower GCSEs; either through more schools absence aged 14-16, or other processes such as weight-related bullying.
Our results suggest increased school absence may partly explain impact of higher BMI on educational attainment, but that other processes are also involved.

ADHD was related to lower GCSE grades, but not increased school absence.

In line with previous research, young people genetically predisposed to ADHD did less well in their GCSEs.  Interestingly, they did not have increased school absence, suggesting that ADHD’s impact on learning works mostly through other pathways. This is consistent with previous research highlighting the importance of other factors on the academic attainment of children with ADHD, including expectations of the school environment, teacher views and attitudes, and bullying by peers.

We found little evidence for an impact of asthma, migraines, depression or ASD on school absence or GCSE results

Our genetic analyses found little support for a negative impact of asthma, migraines, depression or ASD on educational attainment. However, we know relatively little about the genetic influences on depression and ASD, especially compared to the genetics of BMI, which we understand much better. This makes genetic associations with depression or ASD difficult to detect. So, our results should not be taken as conclusive evidence that these conditions do not affect learning.

What does this mean for students and teachers?

Our findings provide evidence of a detrimental impact of high BMI and of ADHD symptoms on GCSE attainment, which for BMI was partially mediated by school absence. When students sent home during the pandemic eventually return to school, the impact on their learning will have been enormous.  And while all students will have been affected, our results highlight that young people who are heavier, who have ADHD, or are experiencing other health problems, will likely need extra support.

Further reading

Hughes, A., Wade, K.H., Dickson, M. et al. Common health conditions in childhood and adolescence, school absence, and educational attainment: Mendelian randomization study. npj Sci. Learn. 6, 1 (2021). https://doi.org/10.1038/s41539-020-00080-6

A version of this blog was posted on the journal’s blog site on 21 Jan 2021.

Contact the researchers

Amanda Hughes, Senior Research Associate in Epidemiology: amanda.hughes@bristol.ac.uk

COVID19 – should schools close early for Christmas?

Sarah Lewis, Marcus Munafo and George Davey Smith

 

 

We have previously written about the limited risk posed to pupils, teachers and the community by schools being open during the Covid19 pandemic. Schools have now been open for almost a full academic term (3 months), so it is time to take another look at the evidence. (more…)

Are schools in the COVID-19 era safe?

Sarah Lewis, Marcus Munafo and George Davey Smith

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The COVID-19 pandemic caused by the SARS-COV2 virus in 2020 has so far resulted in a heavy death toll and caused unprecedented disruption worldwide. Many countries have opted for drastic measures and even full lockdowns of all but essential services to slow the spread of disease and to stop health care systems becoming overwhelmed. However, whilst lockdowns happened fast and were well adhered to in most countries, coming out of lockdown is proving to be more challenging. Policymakers have been trying to balance relaxing restriction measures with keeping virus transmission low. One of the most controversial aspects has been when and how to reopen schools. (more…)

Maximum cigarette pack size: a neglected aspect of tobacco control

Written by Anna Blackwell, Senior Research Associate

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The manufacturing or importing of packs of cigarettes with fewer than 20 cigarettes per pack was prohibited in the UK when the EU Tobacco Products Directive and standardised packaging legislation were fully implemented in May 2017. This change was aimed at reducing the affordability of cigarettes and thereby discouraging young people from smoking. This directive also required the removal of branding and established a standard shape and dark green colour for packaging, including pictorial health warnings, which prevented the use of packaging for promotion and reduced its appeal.

However, the tobacco industry has been able to exploit loopholes in recent packaging regulations, including the absence of a regulated maximum pack size, by introducing non-standard and larger pack sizes to the market to distinguish products. This is a public health concern given evidence that larger pack sizes are linked to increased smoking, and could undermine existing tobacco control success.

Evidence shows that larger pack sizes are linked to increased smoking.

In a recent Addiction Opinion and Debate paper, we proposed that a cap on cigarette pack size should be introduced; a pragmatic solution would be to permit only a single pack size of 20, which is now the minimum in many countries. This approach would reduce the number of cigarettes in packs in several countries such as Australia – where packs up to sizes of 50 are available – and prevent larger sizes being introduced elsewhere.

Capping cigarette pack size therefore has the potential to both reduce smoking and prevent increased smoking. While the health benefits of reducing smoking alone are small, it may have important indirect effects on health through its role in facilitating quitting. Those smoking fewer cigarettes per day are more likely to attempt to quit and succeed in doing so. Trials of smoking-reduction interventions have also found that these can lead to increased quitting when combined with nicotine replacement therapy.

Our Opinion and Debate paper drew on evidence from a range of sources including industry documents and analyses, population surveys, intervention trials and Mendelian randomization analyses. Together these suggest that consumption increases with larger pack size, and cessation increases with reduced consumption. However, direct experimental evidence is not currently available to determine whether pack size influences the amount of tobacco consumed, or whether the association is due to other factors.

People who want to quit may be using smaller packs as a method of self-control, and smokers who successfully cut down and later quit may be more motivated to do so. Cost is also an important factor and larger packs may be linked to increased smoking because they have a lower cost per cigarette. Further research is needed to determine whether the associations between pack size, smoking and cessation are causal to estimate the impact of policies to cap cigarette pack size.

Commentaries on our Opinion and Debate paper, published in the May 2020 Issue of Addiction highlight the need to understand the mechanisms for the associations observed between pack size and smoking in order to identify the optimal cigarette pack size. Although mandating packs of 20 is a pragmatic approach, pack size regulation needs to achieve a compromise between tobacco affordability and smokers’ self-regulation. Nevertheless, the policy debate should start now to address this neglected aspect of tobacco control.

To find out more visit the Behaviour Change by Design website or follow us on Twitter @BehavChangeDsgn @BristolTARG

 

This blog post is reposted from the TARG blog.

Are teachers at high risk of death from Covid19?

Sarah Lewis, George Davey Smith and Marcus Munafo

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Due to the SARS-CoV-2 pandemic schools across the United Kingdom were closed to all but a small minority of pupils (children of keyworkers and vulnerable children) on the 20th March 2020, with some schools reporting as few as 5 pupils currently attending. The UK government have now issued guidance that primary schools in England should start to accept pupils back from the 1st June 2020 with a staggered return, starting with reception, year 1 and year 6. (more…)

Do development indicators underlie global variation in the number of young people injecting drugs?

Dr Lindsey Hines, Sir Henry Wellcome Postdoctoral Fellow in The Centre for Academic Mental Health & the Integrative Epidemiology Unit, University of Bristol

Dr Adam Trickey, Senior Research Associate in Population Health Sciences, University of Bristol

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Injecting drug use is a global issue: around the world an estimated 15.6 million people inject psychoactive drugs. People who inject drugs tend to begin doing so in adolescence, and countries that have larger numbers of adolescents who inject drugs may be at risk of emerging epidemics of blood borne viruses unless they take urgent action. We mapped the global differences in the proportion of adolescents who inject drugs, but found that we may be missing the vital data we need to protect the lives of vulnerable young people. If we want to prevent HIV, hepatitis C, and overdose from sweeping through a new generation of adolescents we urgently need many countries to scale up harm reduction interventions, and to collect accurate which can inform public health and policy.

People who inject drugs are engaging in a behaviour that can expose them to multiple health risks such as addiction, blood-borne viruses, and overdose, and are often stigmatised. New generations of young people are still starting to inject drugs, and young people who inject drugs are often part of other vulnerable groups.

Much of the research into the causes of injecting drug use focuses on individual factors, but we wanted to explore the effect of global development on youth injecting. A recent systematic review showed wide country-level variation in the number of young people who comprise the population of people who inject drugs. By considering variation in countries, we hoped to be able to inform prevention and intervention efforts.

It’s important to note that effective interventions can reduce the harms of injecting drug use. Harm reduction programmes provide clean needles and syringes to reduce transmission of blood borne viruses. Opiate substitution therapy seeks to tackle the physical dependence on opiates that maintains injecting behaviour and has been shown to improve health outcomes.

What we did

Through a global systematic review and meta-analysis we aimed to find data on injecting drug use in published studies, public health and policy documents from every country. We used these data to estimate the global percentage of people who inject drugs that are aged 15-25 years old, and also estimated this for each region and country. We wanted to understand what might underlie variation in the number of young people in populations of people who inject drugs, and so we used data from the World Bank to identify markers of a country’s wealth, equality, and development.

What we found

Our study estimated that, globally, around a quarter of people who inject drugs are adolescents and young adults. Applied to the global population, we can estimate approximately 3·9 million young people inject drugs. As a global average, people start injecting drugs at 23 years old.

Estimated percentage of young people amongst those who inject drugs in each country

We found huge variation in the percentage of young people in each country’s population of people who inject drugs. Regionally, Eastern Europe had the highest proportion of young people amongst their populations who inject drugs, and the Middle Eastern and North African region had the lowest. In both Russia and the Philippines, over 50% of the people who inject drugs were aged 25 or under, and the average age of the populations of people who inject drugs was amongst the lowest observed.

Average age of the population of people who inject drugs in each country

In relation to global development indicators, people who inject drugs were younger in countries with lower wealth (indicated through Gross Domestic Product per capita) had been injecting drugs for a shorter time period. In rapidly urbanising countries (indicated through urbanisation growth rate) people were likely to start injecting drugs at later ages than people in countries with a slower current rate of urbanisation. We didn’t find any relationships between the age of people who inject drugs and a country’s youth unemployment, economic equality, or level provision of opiate substitution therapy.

However, many countries were missing data on injecting age and behaviours, or injecting drug use in general, which could affect these results.

What this means

1. The epidemic of injecting drug use is being maintained over time.

A large percentage of people who inject drugs are adolescents, meaning that a new generation are being exposed to the risks of injecting – and we found that this risk was especially high in less wealthy countries.

2. We need to scale up access to harm reduction interventions

There are highly punitive policies towards drug use in the countries with the largest numbers of young people in their populations of people who inject drugs. Since 2016, thousands of people who use drugs in the Philippines have died at the hands of the police. In contrast, Portugal has adopted a public health approach to drug use and addiction for decades, taking the radical step of taking people caught with drugs or personal use into addiction services rather than prisons. The rate of drug-related deaths and HIV infections in Portugal has since plummeted, as has the overall rate of drug use amongst young people: our data show that Portugal has a high average age for its population of people who inject drugs. If we do not want HIV, hepatitis C, and drug overdoses to sweep through a new generation of adolescents, we urgently need to see more countries adopting the approach pioneered by Portugal, and scaling up access to harm reduction interventions to the levels recommended by the WHO.

3. We need to think about population health, and especially mental health, alongside urban development.

Global development appears to be linked to injecting drug use, and the results suggest that countries with higher urbanisation growth are seeing new, older populations beginning to inject drugs. It may be that changes in environment are providing opportunities for injecting drug use that people hadn’t previously had. It’s estimated that almost 70% of the global population will live in urban areas by 2050, with most of this growth driven by low and middle-income countries.

4. We need to collect accurate data

Despite the health risks of injecting drug use, and the urgent need to reduce risks for new generations, our study has revealed a paucity of data monitoring this behaviour. Most concerning, we know the least about youth injecting drug use in low- and middle-income countries: areas likely to have the highest numbers of young people in their populations of people who inject drugs. Due to the stigma and the illicit nature of injecting drug use it is often under-studied, but by failing to collect accurate data to inform public health and policy we are risking the lives of vulnerable young people.

Contact the researchers

Lindsey.hines@bristol.ac.uk

Lindsey is funded by the Wellcome Trust.

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

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?

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 12th 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:

  1. Should they ‘mainstream’ policies – to help prevent ill health and reduce health inequalities – across government and/ or maintain a dedicated government agency?
  2. 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:

  1. 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.
  2. 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.
  3. 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:

  1. 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’.
  2. 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.
  3. 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.
  4. 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.