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Truth, Proof, and Tech: The Quest for Better Digital Health

As the COVID-19 pandemic continues, the ability to share clinical information quickly, safely, and effectively is more important now than ever before

“I specifically remember my first day on call at the hospital. I’d just finished a 13-hour shift, and the last thing left was to complete the ward rounds. That’s when I realised one of my patients had gone missing.”

In 2014, Dr Oliver Harris was a new junior doctor on rotation at an NHS hospital. Much of his first day went as expected: HR protocols, meeting hospital staff, getting to grips with the new role. 

But one thing he didn’t anticipate was the sheer number of IT systems in use.

“When I started, there were seven different systems. One to look at X-rays; another if I wanted to book blood tests or diagnostics; another for prescriptions; one just to write notes on the patient; a separate system to track patients in A&E; and another to track patients on the ward.”

As his shift drew to a close, Dr Harris was making his final checks on patients for the day when he discovered that one of the beds was empty.

“They were just gone. According to the system, the patient should be there on the ward. But they were nowhere to be seen. I ended up having to walk around the hospital yelling out this person’s name, just trying to find them.”

During his shift, it took hours for Dr Harris to locate several missing patients - time in which others on the ward were left untreated. 

The cause of the problem? Interoperability... or lack thereof. 

What Dr Harris didn’t realize was that none of the hospital’s software systems spoke to one another. In order to access up-to-date information, medical staff were expected to check multiple systems and manually duplicate patients’ notes.

One system showed his patient as missing, while another revealed that they were safely stationed elsewhere in the hospital.

Dr Harris’ experience is not unique. In the NHS, medical staff are often expected to remember passwords and login details for upwards of a dozen systems - logging in and out of the different platforms countless times throughout the day. The process eats up precious time that could otherwise be spent with patients, contributing to staff burnout and compromising patient safety.

And the interoperability problem becomes even more apparent when staff try to access data from clinical organizations external to their own.

“We often don't have access to notes from GPs,” says Dr Harris. “So we can’t automatically track a patient’s history outside of the hospital. We rely on them telling us, or bringing in physical copies of information - or else we have to manually call GP surgeries for information.

We don't even have access to paramedic notes from previous visits, so you have no idea if that patient has called emergency services once or 30 times - there’s nothing before that specific visit to the hospital.”

True interoperability requires all of the various medical service providers - GPs, laboratories, pharmacies, and so on - to have access to the same digital records. However, in the majority of countries, that simply doesn’t happen.

As we find ourselves in the midst of a global pandemic, the ability to share clinical information quickly, safely, and effectively, is more important now than ever before. But while global interoperability standards exist, most countries' healthcare services are far from interoperable.

Mind the gap - why interoperability alludes us

The UK is not alone when it comes to the interoperability problem - indeed, the NHS is comparatively more successful in health information exchange than most other national health systems. 

According to World Health Organisation (WHO) figures, over half of member states have an eHealth strategy, but activity is concentrated at primary care level - such as GP surgeries and local health centres. Integration with secondary and tertiary services - hospitals, ambulance services, mental health specialists etc. - is considerably more limited. 

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Some low-income countries continue to rely almost entirely on paper records

The reasons for this vary across different national landscapes. Some low-income countries continue to rely almost entirely on paper records, largely because of the huge financial costs of digitization. Meanwhile, some wealthier countries - the United States and Germany, for example - struggle to integrate interoperability within large and complex health service systems.

Some problems are universal. In its survey of member states, WHO reports a number of shared barriers to developing eHealth solutions, including funding, lack of capacity, and infrastructure limitations. 

Creating a truly joined up system requires significant up-front investment, and in most countries, healthcare budgets aren’t set up to cover this level of spending. Instead, health departments are more inclined to fund smaller-scale IT projects, designed to fill gaps or address urgent issues. 

What’s more, when budgets are decentralized, different healthcare providers will spend their budgets differently. Even within a single hospital, multiple departments can each allocate budget to their preferred system, without any coordination. The result is a series of siloed systems, each working in isolation to meet a specific need.

In addition to this, culture itself can be a barrier. The process of digitizing systems that have traditionally been analogue is a huge undertaking and can cause major upheavals and significant hazards. Generating the political and public will, required to make these monumental changes, is no simple task - but it starts with acknowledging and addressing the risks.

Shades of gray - interoperability risks

It’s not enough to create interoperable health systems; we also need to ensure that those systems are ethical, secure, and patient-centred.

A central concern in any discussion about healthcare interoperability is the prerogative to protect patient data. Breaking down silos between healthcare systems could also lead to more data breaches. If all of the information on a patient is accessible from one place, then a malicious entity only needs to break through one line of defence to access large amounts of data. Under these circumstances, interoperability could pose a security risk.

Issues of privacy and user control also come into play here.  Who ultimately owns health data - patients or clinicians? A truly interoperable system allows clinicians instant access to information gathered by other healthcare providers: but not all patients want this. 

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"Patients trust their doctors and it’s vital that they carry on trusting them"

The advocacy group, medConfidential, campaigns for consent and confidentiality in healthcare. On their website, they highlight the high stakes involved in managing patient data:

“Patients trust their doctors and it’s vital that they carry on trusting them. They must be able to presume that what goes on in their visits is confidential. They need to know that they are in control of their records. That they will be asked for consent before anything in them is shown to anyone else. 

“If patients can’t do this, they will stop telling their GPs the really personal stuff. They will watch their words. They won’t pause in the doorway and say, ‘By the way, doctor, it’s probably nothing, but…’”

And this is a legitimate concern. In the UK and US, we’ve seen cases of patient data being passed onto private companies like Google without the knowledge or consent of either patients or clinicians. In one recent case, an NHS trust agreed to supply patient data to Google in return for the company providing them with interoperable software.

So how do we square the need for interoperability with the drive to ensure patient control over how, when, and by whom, their data is accessed? 

Improved interoperability - a solution on trial

One possible model for better interoperability is a system based - not on data desegregation - but on verification. 

Using a single form of trusted digital identification, clinicians could prove their right to access various different systems without the need for multiple log-ins. Patient data would be accessible, but still siloed. GPs would own their portion of patient data; social services would own their portion; but clinical staff could use their digital ID to request access to other health providers’ data.

This model reduces the risk of mass data breaches, and could help to put control back in the hands of patients, allowing them to limit the circumstances in which various elements of their data can be accessed and by whom.

Dr Manreet Nijjar is a London-based consultant physician and co-founder of Truu: a digital identity solution for healthcare. In partnership with Evernym and Sovrin, Truu uses blockchain technology to provide clinical staff with a single, portable source of digital identification across all elements of the health industry.

Dr Nijjar contends that everything starts with verification - creating trust that an individual is who they say they are. Once that trust has been established, then information sharing can follow.

“You don’t need to hold all the data; focus on the relationship,” Dr Nijjar explains. “Once you have a relationship with someone, they’re going to share more with you. It’s the same in any kind of relationship.”

He continues:

“Systems are already in silos. You might not be able to desegregate the data, but you can mandate how people access it. You can either share data across or you can provide access to that silo. So interoperability doesn't mean you have to convert the data, translate it, and push it across - you can if you want. But it means that others can be granted access to the data and you know who’s accessing it.”

Truu is currently undergoing a regional pilot, with a view to introducing the technology as a national roll out.

“It will take a while,” says Dr Nijjar, “because change does. But hopefully in 3-5 years it will just be the norm.”

This model of interoperability has potentially major implications: if the same form of identity - the same system for verification - was accepted globally, it could enhance patient control and individual trust in healthcare practitioners, potentially increasing uptake of health services.

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Could enhanced identity verification hold the key?

Displaced peoples, vulnerable communities, uncertain patients - all of them would be able to check and directly verify that the person treating them was indeed someone who could be trusted. This global verification ecosystem would support both patients and clinicians - particularly in the context of telehealth, humanitarian medicine, and healthcare delivery to underserved populations.

Meanwhile, clinicians in one part of the world could access systems and information in a completely different region - a practitioner in New Zealand could see information on their patient from Zimbabwe; a doctor from Somalia could access information from a clinical trial in Spain. Under this model, healthcare could become more global than ever before.

“I genuinely believe this is going to change the world,” says Dr Nijjar. “And not just in healthcare. I genuinely believe that if you can verify - if you can know that the other person you’re interacting with is who they say they are - that’s massive.”

Looking ahead - towards interoperable healthcare

Interest in digital health is growing. The UK government recently announced a £40 million investment to improve NHS IT systems. And in many other nations, healthcare services are moving towards interoperable digital ID at an increasing pace. The nordic nations, along with the Netherlands and Estonia, are particularly advanced in eHealth.

In Denmark, national standards for healthcare interoperability have existed since 1994. Led by a publicly financed not-for-profit called MedCom, the Danish health service - including hospitals, GPs, pharmacies, paramedics, and laboratories - are digitally connected. Patient data is accessible through an electronic record, allowing both patients and clinicians to digitally access information. 

Meanwhile, Estonia can boast enviable stats - 99% of the nation’s health data is digitized. The health service revolves around the eHealth Record, which uses blockchain technology to store patient records in a single electronic file, accessible by patients and clinicians alike. 

The progress being made by these nations demonstrates that health systems can be equipped to reap the benefits of technological progress. 

Whilst global interoperability in healthcare may still seem far off, change begins with a conversation. As technology becomes increasingly advanced, the intersections between digital identity and healthcare are ever more apparent. We’re now seeing clinicians, patients, and decision-makers actively taking part in the identity conversation - perspectives that are vital to ensuring digital health is aligned with #GoodID principles.

Dr Nijjar puts it best:

“The thing I find interesting about identity is that it’s so aligned to health: confidentiality, consent, privacy, and justice. It’s all ingrained. This is the way the world is going. It’s just about making sure we do it right.”