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People who use illicit opioids such as heroin have many unmet health needs. Although the high mortality rate in this population is well-known, there is so much that remains to be explored and understood about the use and quality of general healthcare for this population.

In this conversation with Dan Lewer, from University College London, we discuss the first study to identify a cohort of primary care patients in England with a history of illicit opioid use that he and his co-authors carried out. Find out more about the unique insights this offers into primary healthcare, and how it can help improve access and quality of healthcare for this population.

How extensive is use of illicit opioid use in England?  

Unsurprisingly, it is difficult to estimate the extent of illicit opioid use. There are various methods – for example you can extrapolate from the number of people identified by drug treatment services or the police, or you can look at the number of drug-related deaths and make assumptions about the size of the population in which those deaths happened. These approaches suggest there are currently 200,000 – 300,000 people in England who use illicit opioids like heroin. In England, heroin is the main illicit opioid.

What support is available for people with illicit opioid use in England?  

The population is diverse and there are “casual” users, but compared to other drugs heroin is associated with long-term use and dependence. This can be very challenging and there is not always sufficient support, particularly in terms of housing. One important form of support is “opioid agonist therapy” (best known as methadone, but now also including the newer drug buprenorphine), which can help people avoid withdrawal, reduce their use, and stop using illicit heroin. Opioid agonist therapy is associated with a wide range of health and social benefits.

What is needed to help understand the health problems? 

Health research in this population in the past has focused on a specific set of issues – especially prevention of drug overdoses and viral infections like HIV and hepatitis C. We think there are two reasons for this. Firstly, these problems seem like “drug related” problems so it seems natural to focus on them.

Second, these were the main causes of death in this population in the 1980s and 1990s, and the research community has built up a lot of expertise in these areas. The population of people who use heroin was much younger in the 1980s and 1990s. In England – like in some other countries – a lot of people started using heroin in these decades, and the average age was probably in the early 20s. Many of the people who use heroin today have survived from the 1980s and 1990s and the population is now much older, and the average age is more like mid-40s.

Many people have smoked tobacco for decades and some have been intermittently homeless or in prison. Other health problems are becoming much more important. Staff at drug treatment centres say their clients have respiratory diseases, cardiovascular diseases, and other physical health problems that are often untreated.

Emerging evidence suggests that these diseases are now causing more excess deaths in this population than drug overdoses or viral infections. We wanted to research these health problems and so we designed the HUPIO cohort.

You used primary care data to create this cohort. Please explain why you used primary care records and the advantage of using this data.

Primary care (or GPs) manages health problems in the community. GPs diagnose and treat all kinds of health problems and are gatekeepers to specialised health services. Our aim was to understand healthcare utilisation and quality of healthcare for people who use illicit opioids, and primary care is a central part of that.

Why was it important to include patients and public in this and discuss research and healthcare issues with people who use illicit opioids?  

Involvement of people who use illicit opioids has been a real learning experience for me. “Patient and public involvement” is now required by many funders, and it can seem like an “add-on” activity at first. But once you start doing it, you quickly realise how useful it is. This whole project had its roots and patient and public involvement.

I first became interested in this population when I was working at Public Health England and investigated an increase in the number of hospital admissions for bacterial infections related to drug injection. I wanted to know why people were not getting their wounds assessed and treated at an early stage, and were ending up in hospital. It seemed to reflect very poor healthcare access. I set up some workshops with people who use heroin, and they told me that injecting-related wounds are an important issue – but diagnosis and treatment of long-term conditions like respiratory diseases is much more important.

The HUPIO cohort addresses this, and it captures community and hospital healthcare for long-term conditions. As we analyse the cohort, we will continue to discuss our plans and findings with people who use drugs, and I expect that will greatly improve the quality of our work.

How many patients did you identify and what makes this dataset unique?  

Between 1997 and 2020 we identified 140,000 people who use illicit opioids. This is a big sample of the population, which is one of HUPIO’s strengths. Another strength is the inclusion of people who have never been in drug treatment. Many studies of this population draw samples from drug treatment services.

Our study includes a lot of people who have clinical observations such as “heroin dependence” recorded by their GP, but no prescription of methadone or buprenorphine. Of course, not everyone wants to disclose drug use to their GP and HUPIO has its own selection biases, but it does allow us to study a big population that is probably excluded from many other studies.

How can this support the unmet healthcare needs of people with illicit opioid use?  

We hope that HUPIO will enable better healthcare for people who use illicit drugs. We have studies underway into consultation rates at GPs, the quality of care for chronic obstructive pulmonary disease, the incidence of self-harm, and community care after major infections such as endocarditis (an infection of the heart that is rare in the general population but common among people who inject drugs).

These detailed studies will show how health services can be more accessible for this population. HUPIO will also show the wide range of unmet health needs in this population and how long-term conditions have become more important in recent years.

We hope this will support investment in services that provide more holistic care. Drug treatment services are often the only point of contact that people who use heroin have with the NHS. These services have undergone cuts and struggle to simply review their clients’ prescriptions of methadone or buprenorphine. They are not set up to care for a population with increasingly complex physical health problems.

As a researcher, what does open research mean to you? Why did you decide to publish your Research Article on Wellcome Open Research, a platform that adopts an open research and open peer review model?

Open research means publishing findings in an accessible and transparent way. It means making your methods and data as freely available as possible so that others can build on your work. This is particularly important for a foundational study such as this. It means publishing peer reviews so that readers can understand the scrutiny that has taken place. I like to think of reviewers as part of a team that improves a study and prepares it for publication, rather than anonymous (and sometimes grumpy) people who you have to appease.

Crucially, it means being open about your mistakes and correcting them. I suspect that a lot of mistakes are buried in health research and we would all benefit from a system that rewards identification and correction of these mistakes. In this article, we found a mistake in an earlier version related to “immortal time bias”. Declaring and correcting this mistake and informing readers and reviewers was straightforward and did not undermine the article.

“This will be a powerful and pragmatic tool for examining a wider than previously considered range of health outcomes for a cohort of people with a history of illicit opioid use, and their longer term progression,” explains Sally McManus, from the University of London and National Centre for Social Research, UK in her review of the article.

You can read the full Research Article and the peer review reports via Wellcome Open Research, ‘Healthcare use by people who use illicit opioids (HUPIO): development of a cohort based on electronic primary care records in England’ >>