Good data analysis can reveal uncomfortable truths – such as the reality that the poorest hepatitis C sufferers get least help from services. By Catherine Blackledge
Sharp insight: thousands who need treatment for hepatitis C are not getting it
In the classic fairytale, Cinderella is barred from going to the ball. Accustomed to an unequal existence at the hands of her step-family, she accepts this latest inequality as her fate and does not complain.
There are striking parallels between Cinderella’s situation and the most deprived patients with hepatitis C in England. Data from IMS Health highlights the increasing inequality, in terms of socio-economic status, in access to diagnosis and treatment of hepatitis C in England.
‘Data like this will hopefully put pressure on the NHS for effective treatments to be available’
Figures for the period 2010-2012 reveal that treatment rates for hepatitis C patients are higher in those socio-economic groups that are less deprived, while treatment rates are actually falling in the most deprived 10 per cent of hepatitis C patients. The IMS Health data also indicates that, of newly diagnosed patients, 80 per cent are in the most deprived 50 per cent of the population.
Charles Gore, chief executive of the Hepatitis Trust, welcomes this information: “It is useful because it backs up other data we have about the deprived status of these patients in England and in Scotland. This is clearly a disease that is most prevalent in disadvantaged groups.”
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Commenting on the IMS Health insight, he adds: “The other key thing that is interesting is that it shows, given this disproportionate effect, that this group of patients gets the least access to treatment. It widens an existing inequality.”
The question exists: are these low and falling treatment rates related to the socio-economic status of hepatitis C patients and the prejudice that this is a disease associated with a poor lifestyle and drug abuse? “The expectation of this patient group is very low,” says Mr Gore, “they tend to be used to being ignored. They have the opposite of the sense of entitlement and may believe that it is fine for everyone to ignore them.”
That is why, he notes, research like this – highlighting the situation of a group who do not speak up for themselves - is vital. Without it, those commissioning services and providing care may continue to overlook these people. “Data like this will hopefully put pressure on local authorities to make sure testing is commissioned and put pressure on the NHS for effective treatments to be available.”
IMS Health’s data provides novel insight because it is drawn from two information streams: it integrates proprietary IMS Hospital Pharmacy Audit information with hospital episode statistics outcome data at a patient level. Known as Hospital Treatment Insights, the dataset can provide information on the whole patient journey, from GP through to specialist treatment.
“It gives for the first time an indication of not only what a patient is being diagnosed with but also what they are being prescribed. For the first time, they are being linked together at the individual patient level,” says David Franks, director, offering development and marketing at IMS Health, who has worked on the hepatitis C project.
‘It highlights the need to identify patients and enable access to the newer drugs that are becoming available’
There is a great deal that can be done with the information, says Mr Franks. “You can look at patient treatment pathways; look at what drugs the patients get, whether those medications change, or slice into the information across the pathway to see, for example, what the market share of a particular drug is or what particular indication it is being used for.”
The dataset was set up in January 2010 and incorporates HPA data from 42 trusts (about 25 per cent of the total). Anything that is dispensed through the hospital pharmacy is recorded (ward stocks, such as analgesics, and medicines used in an acute/emergency setting, such as thrombolytics, are generally poorly covered).
Under data privacy laws, the information can only be looked at on a national aggregated level. However, individual trusts working with IMS Health do then have the ability to look at their own activity in comparison to the national picture.
Hepatitis C facts
According to Public Health England, around 160,000 individuals are chronically infected with hepatitis C in England. Between 2006 and 2011, just 28,000 people (3 per cent of the infected population) received treatment. The Hepatitis C Trust estimates that between 100,000 and 150,000 patients in the UK remain undiagnosed with hepatitis C.
On the horizon are effective, tolerable oral treatments that can cure the disease in over 90 per cent of patients in just 12 weeks. Sovaldi (sofosbuvir) has been approved by NICE but, amid concerns about cost, NHS England has requested the deadline for services and funding to be in place to be pushed back to August 2015. Olysio and Daklinza have also recently been approved for use.
This kind of data, says Mr Franks, enables commissioners or others “to see, not just whether drugs are being prescribed, but also which type of patients they are being prescribed for, so they can assess the appropriateness of the intervention”. Looking at the hepatitis C dataset, he says it highlighted the difference in treatment rates between the deprived and the less deprived.
Dr Deepak Joshi, consultant hepatologist at King’s College Hospital Foundation Trust, hopes the IMS Health insight can help direct commissioners to go out into their local communities and see what is really needed.
It is positive, he says, because “it highlights an area that in the past has often been overlooked; it highlights the need to identify patients and enable access to the newer drugs that are becoming available”.
Up until four or five years ago, he notes, with no new effective treatments in sight, there was little optimism. In contrast, today, with a raft of new drugs approaching launch there is a real enthusiasm about what can be done.
“It is a real opportunity to highlight the disease and what services we do have, and build on that,” he says. “There is an opportunity to tackle this disease head on. The landscape has changed dramatically.”
It is hoped that, with data revealing the inequity of the situation to those commissioning services and the promise of drugs that do work, far fewer hepatitis C patients will be ignored.
Tim Sheppard on the right data
NHS reforms have made addressing health inequalities a statutory requirement for all health and social care commissioners and providers. In 2010, the Marmot review into health inequalities in England found more deprived people have a higher chance of premature mortality. Yet socio-economic factors are still overlooked when assessing access to diagnosis and treatment.
Hepatitis C disproportionately affects disadvantaged people. A recent study that we conducted of diagnosis and treatment of the condition in England identified a clear bias against deprived patients.
With more effective treatment available and greater public awareness, Public Health England, local authorities, NHS England and clinical commissioning groups have a tremendous opportunity to work together to tackle hepatitis C. Increasing early diagnosis is the key. The UK health system is sitting on a wealth of data that, with the right analytical skill and modelling, can uncover opportunities to dramatically improve early diagnosis rates. Predictive analytics can fuel the transformation from a focus on the volume of procedures to the value of outcomes. Predictive tools are helping providers assess patients’ risk of contracting a condition - this type of modelling could be significantly beneficial in tackling hepatitis C.
Hepatitis C does not present symptoms in its early stages, so people can remain unaware they are infected for years. Collecting, integrating and analysing data from multiple sources could effectively identify those at risk, who could then be tested.
The NHS is spending nearly £83m a year tackling complications associated with the disease, and this is projected to rise to £115m. The annual cost of care for a person with decompensated cirrhosis is £12,432; for someone with hepatocellular carcinoma it is £11,078; and every liver transplant costs in excess of £50,000. The cost of a basic antibody dried bloodspot hepatitis C test is £15. Whilst this is a very simplistic presentation of savings potential, it highlights how earlier diagnosis could significantly impact not just the patient, but the related spend for hepatitis C.
One answer to the question of how to create a real step change in hepatitis C prevalence in England is to enable providers to unlock the knowledge within the information they already hold, turning data into actionable insight that can be readily applied on the frontline.
Tim Sheppard is general manager at IMS Health.
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