Presenting at the forthcoming BSA Medical Sociology Annual Conference

Last week, we headed to Glasgow for the BSA Medical Sociology Annual Conference to share a sneak preview of our findings from This Sickle Cell Life: voices and experiences of young people with sickle cell.

Sickle cell disease is a genetic blood disorder disproportionately found in minority ethnic communities in Britain. It is a chronic debilitating condition that both causes cumulative damage to multiple organ systems, and causes acute pain.

This Sickle Cell Life is part of the work of DEPTH research group at LSHTM. The project explores how people move from using child to adult healthcare services and asks young people about their experiences of living with sickle cell. Transitioning to adulthood is obviously not just something that affects clinical experiences and so we also explore education and relationships, and ask young people what is important to them.

At the BSA MedSoc conference we talked about how healthcare transitions shape the identity of young people, and how these transitions help ‘make’ particular kinds of patients.

Why focus on identity? Health transitions need new health knowledge and new behaviours to develop, but they also need development of self-perceptions and understandings of how a person should behave as an adult (rather than a child) patient. In this way, identities play an important role in shaping health practices and beliefs. Understanding identity development during transitions can help explain why some young people transition smoothly or less smoothly into healthy adulthood.

In our presentation, we talked about how ideas and discourses about self-management and healthy lifestyle within healthcare today act as a way to discipline young people “at a distance”, to quote Miller & Rose (1990) and influence their behaviour. These healthcare self-management discourses intersect with demands from schools that are often not compatible. For instance, schools demand that young people excel and become entrepreneurial, competent individuals, but excelling at school is far more difficult for young people who have to spend time in hospital, or who have to rest regularly to avoid having a pain crisis. These intersecting demands can translate into conflicting “self-disciplining” identities.

For young people with sickle cell, we found that transitions to adulthood involve relentless self-disciplining and self-surveillance to try to be as healthy as possible, while also aspiring to work hard so that they can develop and meet educational and career goals.

You can check back on our updates from the BSA conference on the Sickle Cell LifeTwitter account, here.

Opioid overdose is a public health crisis – are fentanyl test strips the answer? – by Catherine McGowan

Despite widespread media attention, repeated public health alerts, and the US President’s declaration of the opioid overdose epidemic as a ‘public health emergency’, fatal overdoses continue to rise.

A key factor is pharmaceutical fentanyl – a powerful synthetic opioid commonly used in clinical settings to reduce moderate to severe pain. Since 2014 illegally manufactured fentanyl, and many of its analogues, have been used to adulterate street drugs, principally heroin. Fentanyl is considerably more potent by weight than heroin and has been responsible for a significant number of fatal drug overdoses in North America since 2015.

Preliminary data released by the Centres for Disease Control and Prevention suggest that in 2016 more  than 20,000 people died from unintentional overdoses involving synthetic opioids (not including methadone) in the United States. In Canada, 3,671 people died from unintentional overdose in 2017 – 72% of these deaths can be attributed to fentanyl or fentanyl analogues.

Syringe and fentanyl test strip
Photo by Anne Koerber

So what can be done?

Harm reduction agencies in North America have begun to distribute test-strips which, when dipped in a drug solution, are able to detect fentanyl and many of its analogues. Is this a potential answer to the overdose problem? Perhaps; but caution is required.

First, research suggests that while self-testing technologies may be accurate in a laboratory, they may be considerably less effective when used in a real-life setting. Contamination, for example with injecting equipment, is more likely to occur in a street setting than a laboratory.

Second, the test strips are only able to indicate whether or not fentanyl is present in a drug solution, they do not indicate how much fentanyl is present. In cases where a comparatively large proportion of a drug is fentanyl, ‘test hits’ taken by users to reduce their risk of overdose in response to a positive test may be ineffective in reducing the risk of overdose.

Third, while some test strips have demonstrated greater than 95% accuracy, this still leaves the possibility of a false negative in one in twenty tests of fentanyl-adulterated drugs. People may inject heroin up to five times a day rendering false-negative a fairly regular occurrence. Additionally, test strips have shown to have a low detection limit, a drug sample may test positive when a minimal amount of fentanyl is present. There is a risk that users may not consistently modify behaviour if drugs are routinely testing positive without producing the anticipated psychoactive effect.

Fourth, not all test strips are created equal. DanceSafe, a US-based public health organisation, in conjunction with the University of California San Francisco, tested five fentanyl test strips from three different manufacturers and found that four of the test strips did not detect carfentanil (a fentanyl analogue that is considerably more potent by weight than fentanyl); one test strip did not work at all.

The need to tackle the fentanyl crisis is clear. A recent drug-checking pilot carried out in Vancouver found that 90.6% of drugs submitted tested positive for fentanyl. Though fentanyl was most commonly found in heroin, it was identified in other street drugs as well, including: amphetamines, methamphetamines, crack, and cocaine.

And the problem is not confined to North America. Since 2014, six fentanyl variations have been identified in the UK, with several overdoses attributed to fentanyl occurring in the North East of England in 2017.

But should we be promoting test strips as a potential solution to the crisis?

In June 2018 Health Canada cautioned against relying on test strips alone, suggesting that other precautions were necessary to prevent overdose including: never consuming alone, consuming a lower dose – “start low and go slow”, and only using drugs in the presence of someone who is equipped with, and knowledgeable about the administration of, naloxone.

Providing appropriate messaging on how to interpret test results and their limitations is key. We must understand more about the accuracy and acceptability of fentanyl self-testing, and research should also aim to inform the development of an effective means of dispensing test strips – and associated risk-reduction measures – to those who do not regularly come into contact with harm reduction services. Education and appropriate harm reduction messaging to mitigate against the risk of false negatives alongside strategies to prevent or reverse overdose is crucial.

There is huge potential in self-testing technology but it must be used as part of a package of risk-reduction measures. The problem is clear but the answers are not.

Fentanyl self-testing outside supervised injection settings to prevent opioid overdose: Do we know enough to promote it?

You can also read Catherine’s research in the latest New York Times article, available here.

Thoughts on our New ‘Slow Co-production’ Article – by Sam Miles

Our article, ‘Slow co-production’ for deeper patient involvement in health care’, has just been published in the Journal of Health Design. It’s open access so anyone can read it, download it and share it. The article argues that ‘slow co-production’, achieved by involving patients in in-depth research, can help deepen patient involvement in health care. We describe how slow co-production offers a mutually beneficial form of patient and public involvement. It promotes patient-centered knowledge and helps us to examine and reflect on the co-production processes themselves, rather than always rushing to evaluate the end product as if it came into being without a process and a series of human relationships.

The thinking behind this article was our different and shared experiences of time constraints in qualitative fieldwork. We discussed, for example, those times when we felt pressured to move on from fieldwork when we didn’t feel we had been able to fully examine the narratives that we were learning about, or the interviews we were conducting. This restriction to fieldwork research is usually required for budget and time constraints, but it can feel frustrating to have to withdraw from the work being conducted when it feels like there is more to be gained.

More positively, we recognise that we have also experienced opportunities for more thorough, in-depth ‘slow’ research, including the Sickle Cell project that this new article takes as its case study. We believe that this kind of ‘slow’ research, as previously explored in healthcare research by Vincanne Adams et. al (2013) and Heather Mendick (2014) amongst others, is an important antidote to the ever-building pressures that are heaped upon the researcher. To make things yet more complicated, these pressures come from a range of different external sources: for example, a rush to complete fieldwork within a limited timeframe to minimise costs for the funding body, or unexpected delays in participant recruitment that mean that tightly organised fieldwork cannot extend beyond the ethical clearance period granted by the host organisation.

This idea of ‘slow’ working isn’t new (see, for example, Honoré, 2005, or ‘A Call for Slow Scholarship’ by Hartman and Darab, 2012), but it is worth repeating: so much of academic research is subject to the restrictions of budget, outcome, time constraints and metrics that need ticking off that we forget how valuable time and space are for germinating our best ideas. The useful analytical frameworks, or new theories, or vital links we make between seemingly unrelated sets of results are often produced in the scarce time we get to think deeply about concepts or theories at length. It is this type of time which has become most compressed in the contemporary neoliberal university, where there are so many competing demands on the researcher’s time and attention, from emails to admin to marking to service.

In our discussions we came to a consensus that for us, ‘slow’ co-production is about having time to genuinely engage with others in dialogues that cover more ground than simply sharing ideas, although of course ideas come from dialogue so the two concepts aren’t separate. As well as sharing ideas, we can think of slow co-production in terms of humanity and human rights: specifically, reducing the gap between the researcher and the researched, and trying to find common ground in a qualitative methodology that productively disrupts some of the traditional boundaries that we have seen replicated over and over across social sciences and public health research. Therefore, as well as the point that taking more time in the research field can develop more positive, meaningful relations between the different parties in the research, we also want to stress that this in-depth, detailed, sensitive approach to interviewing is a specific form of co-production, and one that we want to pursue further across our DEPTH projects.

So, whilst our article is primarily arguing for the importance of involving patients and participants in qualitative research from the start and throughout the lifespan of a research project, we hope it also offers a small insight into the opportunities enabled by ‘slow’, thorough working between researchers and participants. This ‘slow’ process – scarce as it sometimes feels the opportunity is – can offer a really valuable way into mutually beneficial collaboration.

References

Adams V, Burke NJ, Whitmarsh I. (2014) Slow Research: Thoughts for a Movement in Global Health. Medical Anthropology, 33(3): 179-97. https://doi.org/10.1080/01459740.2013.858335 ​​​​​

Hartman Y, Darab, S. (2012) A Call for Slow Scholarship: A Case Study on the Intensification of Academic Life and Its Implications for Pedagogy. Review of Education, Pedagogy, and Cultural Studies, 34(1): 49-60. https://doi.org/10.1080/10714413.2012.643740

Honoré C. (2005) In Praise of Slowness: Challenging the Cult of Speed. New York: HarperCollins.

Mendick H. (2014) Social class, gender and the pace of academic life: What kind of solution is slow? Forum: Qualitative Social Research, 15(3):7. http://nbn-resolving.de/urn:nbn:de:0114-fqs140374.

A whistle-stop tour of the DEPTH research group at LSHTM

Now that you’ve been introduced to our new blog, we thought it would make sense to give you a whistle-stop tour of our DEPTH research group here at LSHTM.

We are a group of scholars in the Department of Public Health, Environments and Society at London School of Hygiene & Tropical Medicine who take an interdisciplinary approach to health. We are one of LSHTM’s newest hubs, developed earlier this year as a way to bring together some of our shared work. We use the acronym DEPTH to unify our themes of Dialogue, Evidence, Participation and Translation for Health. We conduct research into different types of dialogue and different people’s participation in health with the aim of increasing equity and improving health worldwide, and amplifying less-heard voices.

Our new website has allowed us to introduce a wider audience to our public health work – you can check it out here. We see it as a space for communication and conversation – not just with academic colleagues, but also in policy debates, in education systems and with the wider public. We also think it is important to show our work to a wide range of audiences, not just specialists, and so we have listed all of our individual or combined efforts on this page, including summaries of each research paper listed in plain English, with concepts summarised and acronyms explained. You can read about the six Research themes that underpin DEPTH here. These research themes include our work on patient and public involvement, dialogues about sexual and reproductive health and young people’s experiences of Sickle Cell, and our work with Imperial College London on the ethics of electronic health records.

As for this blog, it functions as a conversation space. It provides a way for us to write about important studies in the field of community involvement, participation and public health. We will talk about our own research, but will also write about current affairs as well as research from elsewhere, when we would like to contribute to debate. We agree that one of the most important things we can do as academics is move beyond our own research specialisms to listen to – and amplify – the perspectives of those who may be less heard. We hope you will find these perspectives as valuable as we do – and key to this is conversation.

Finally, we want to hear from you too! Our blog now has comment space, and we’re very keen to hear your views, thoughts and ideas. You can get also get involved via our Twitter account, and you can contact us with questions, feedback or even your own blog pitch. Finally, look out for upcoming events on this blog page, where we will post details of future talks, meetings and events, as well as commentaries on new publications and policy.

Thanks again for reading and we look forward to sharing more about our work at DEPTH.

Sam, Research Fellow, DEPTH.

Welcome to our DEPTH research blog

 

Hello readers,

Welcome to our DEPTH research blog here at LSHTM. DEPTH stands for Dialogue, Evidence, Participation and Translation for Health. We are a research hub in the Public Health & Policy faculty of London School of Hygiene & Tropical Medicine. The research hub is made up of LSHTM staff members Cicely Marston, Alicia Renedo, Catherine McGowan and Sam Miles, along with doctoral researchers who you can read more about here.

We’ve recently developed our own website, including academic publications, updates and links to our research areas including This Sickle Cell Life, sixteen18 and patient & public engagement. To ensure maximum interaction with readers, we have made this WordPress website to allow (indeed, to positively encourage!) reader comments. We feel that this is a crucial part of our work. We see our blog as a space for communication and conversation – not just with academic colleagues, but also in policy debates, in education systems and with the wider public.

Welcome in!