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Does primary care data hold the key to reaching the unknowingly unwell?

By Dr Ian Wood, GP and clinical director for EMIS



Dr Ian Wood, a GP and clinical director for EMIS, explores how primary care patient records could help the NHS realise greater early intervention and treatment for patients unknowingly living with life-threatening conditions.   

For most life-threatening conditions the public health messages around early intervention focus on patient vigilance and the importance of screening.

If you spot blood when you go to the toilet, if you’ve had a cough for more than three weeks or if you find a lump or change in your breast or testicle.

These are all examples of when we ask patients to act and to seek medical advice.

But how do we improve appropriate intervention and treatment for other debilitating and life-threatening conditions when in the early stages they can be asymptomatic or masked?

One such condition – although there are plenty – is Hepatitis C.

Hepatitis C can be asymptomatic for decades.

Many people are often unaware that they have the condition until it’s developed into far more serious, more difficult to treat or fatal conditions.

According to data from NHS England, 10 to 40 per cent of people who have untreated Hepatitis C will develop cirrhosis.

One in five people with cirrhosis will develop liver failure and one in 20 will go on to need treatment for liver cancer.

These figures are especially shocking when you consider that the blood borne virus is now, thanks to treatment advances, entirely curable.

And if Hepatitis C is caught early most people can go on to live normal, healthy lives.

It’s this opportunity that led the World Health Organization to set the health community a challenge – to eliminate the condition by 2030.

And so confident were NHS England that they set their own far earlier target of 2025.

Leading us back to the question of how do we find the unknowing undiagnosed?

Primary care could hold one of the answers.

Last year a pilot programme, led by NHS England (NHSE) in collaboration with MSD, began using primary care patient records to help identify those most at risk of Hepatitis C.

The pilot used a Patient Search Identification (PSI) tool, alongside Pathway from EMIS – which helps find patients with certain conditions, or those at risk of them and manage their care  – to scan an estimated 300,000 patient records.

The search used technology to find patients with coded Hepatitis C risk factors, such as intravenous drug use, blood transfusions or organ transplantation before 1992.

Once an at-risk patient has been identified, an Operational Delivery Network (ODN) participating in the pilot invited the patient for a review, screening and if appropriate, treatment.

At a time when primary care is enormously overstretched with both a workload and workforce crisis, it’s critical that any new approach does not exacerbate the issue.

The pilot aims to address this gap.

It realises the value and power of primary care data in identifying cohorts of patients across a region who might benefit from an intervention.

But rather than increasing demands on general practice, it connects this data, using all the necessary data permissions and safeguarding, with the multiple other healthcare teams who have the capacity and agency to meet those patients’ needs.

This might be ODNs as is the case for Hepatitis C, but it could also be a PCN team, a newly commissioned service, community pharmacy or others in secondary or tertiary care.

It’s an approach that could help change even more lives. Take for example Chronic Obstructive Pulmonary Disease (COPD).

COPD is the most common respiratory condition in the UK and the second largest cause of emergency hospital admission.

In the UK it’s estimated that around three million people are living with the disease, yet as few as 900,000 are understood to have been diagnosed.

Despite COPD typically starting to affect people over the age of 35, it’s often not until they’re in their 50s that the condition is diagnosed.

Unlike Hepatitis C, COPD isn’t curable. But it is manageable.

If caught early it’s possible to slow the progression of COPD and control its symptoms.

The difficulty with early diagnosis is that some of the symptoms associated with COPD can be easy for people to dismiss such as a ‘smokers cough’ or masked by other illnesses such as chest infections.

As the symptoms gradually worsen over time, with daily activities becoming increasingly difficult, it’s often only at the point of crisis where diagnosis is made.

However, by adopting a similar approach to that being used to locate, diagnose and treat patients with Hepatitis C, we could stem the rates of COPD patients being identified only at a later stage.

By mining primary care patient records we would be able to find those at greatest risk from COPD, those with a history of smoking; frequent chest infections combined with people over the age of 35.

People born with underdeveloped lungs, with asthma, even those who have held occupations whereby they’ve been exposed to dust and chemicals, for example.

Imagine the impact to patient quality of life and the positives this could mean for the NHS too.

The annual economic burden of COPD on the NHS is estimated as £1.9 billion with treatment following exacerbations of symptoms accounting for 70 per cent of these costs.

And it’s not just COPD where this approach could change lives.

What about heart failure and chronic kidney disease – these are also strong candidates for similar pilot programmes.

Primary care insights clearly could hold the answer to further early intervention, but the onus doesn’t have to be on GP practices.

With technology and by working together across the healthcare industry we can get the best care to the right patients.

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