Harper van Steenhouse, president and co-founder of precision diagnostics firm BioClavis, described to The Scotsman’s online Life Sciences Conference how “massive amounts of data from lots of samples” is being created – but Scotland can make better use of it.
“Unfortunately, we mostly fall short of what the potential could be,” he said. “Fortunately, we get close, but the things we miss are little linkages in data and that chips away at the power to find meaningful biological interactions between molecules, imaging and disease states. Any lack of consistency in real practice becomes a big issue in terms of our ability to find meaningful links.”
Van Steenhouse explained how this could impact on patients: “We typically look at multiple different clinical factors and multiple gene markers at the same time. Let’s say there’s 20, 50, or 100 parameters and you lose 1 per cent of those. It seems small, but in reality, you’re dropping your power dramatically to find meaningful biological interactions, because each patient has those 20 or 50 parameters.”
The conference heard similar comments in relation to health data in Scotland, which has been routinely collected for more than40 years now.
Emily Jefferson, director of the Health Informatics Centre at the University of Dundee, said this data, combined with individuals’ unique community health index number, was extremely useful. “It uses somebody’s date of birth within the identifier, whether they are male or female, then another four digits – so it’s an awful lot easier, than it is with just a random number, to make sure the person in the database record is actually that person, and to ensure you’ve got that linkage between different datasets from across the health sector.
“For well over a decade, there’s been some really highly-curated, well-managed databases of longitudinal data going back about 40 to 50 years.”
Jefferson said that the four regional data safe havens, and the national data safe haven were crucial to drawing insights from this information: “The national level data has breadth, but regional safe havens have the depth of data, as they have connections to clinical systems and data, like lab results. There’s an awful lot of work going on at the moment to try and streamline the processes of national and regional safe haven projects, because then you can get the breadth and the depth.”
She also addressed the issue of trust: “The public are not happy about the idea of their data being shared generally with industry, and safe havens can streamline that process. It still has public trust – that data isn’t being exported to companies – but we can get the public benefits of being able to analyse that data, develop AI within that, and still have the positive benefits.”
Steph Wright, from innovation centre The Data Lab, said there was a way to go in terms of linking up health data meaningfully: “There are lots of challenges around the fact that all this data is held across very different systems, in different formats, and with different legacies. It’s not straightforward.”
Wright, also head of Scotland’s AI Alliance Support Circle, also outlined the potential for artificial intelligence to make positive use of enormous volumes of health data. This could include assessing tumours in the lung, she said: “For the human eye to assess these tumours is incredibly difficult. This is where AI can come in and help automate the process and make interventions and get quicker treatments for patients.”
Van Steenhouse agreed that artificial intelligence has a big part to play: “Human brains are okay at finding patterns within one modality. But when you start looking at multiple modalities, any hope the human brain can pull those together falls apart. I think this is where we’re going and pulling all these pieces of information together is key.”
He thought unlocking future benefits from data meant “figuring out frictionless ways for multiple groups to pull all this together”.
“We’re looking at molecules, the clinicians are looking at the standard clinical signs, the imaging groups are pulling in that imaging information,” he said. “We’re looking at it each from our own angle, but then we can sit at the same table. We don’t interact like competitors. We are trying to find something that’s useful. If it’s useful for any of us, in some sense, it’s useful for all of us – it’s all information, it’s figuring out how to use it to benefit patient care.”
Emily Jefferson told the event that it is important to get more clarity from the Scottish and UK governments on “the acceptable trustworthy use of such data for industry”.
She added: “I think that would really help streamline these things, in terms of where the lines are, and what people are happy with, and what everybody wants to do. I’d also like to see access to good quality data streamlined so the process is very transparent and clear for everybody involved.
“When it isn’t done appropriately, you will get a massive backlash from the public, so it is very important it’s done in the right way.”
Winning ways with fresh approaches sparked by sector’s reaction to coronavirus
The pandemic initially halted many non-Covid clinical trials - but also opened up opportunities for innovative digital solutions to continuing trials, the conference heard.
Suzi Morson, of Aberdeen-based TauRx Therapeutics –now in the final trial phase for a potentially word-leading dementia therapy – said there was a stark choice when Covid-19 arrived: “We had a choice, to stop our trial or find a solution to continue. We chose the latter. Embracing digital health is key to keeping our subjects safe without compromising critical data.”
She explained: “Our study involves two interactive cognitive assessments which we rely upon to prove our drug works. Because of the nature of the assessments, we needed different approaches. One was suitable for telephone administration, the second needed video. The technology was available, but had never been used in this way before.
“Changing the assessments in this way was a risk [and] can have unintended consequences on the data collected. Another risk is yet to come – will regulators accept data collected remotely?”
Morson told the online event that there was “still some way to go before digital solutions are fully integrated”. But, she added: “They have the potential to vastly increase accessibility of clinical trials, which would be a huge benefit to patients, clinicians, and clinical research organisations.”
Euan Cameron of COHESION Medical, said digital solutions had to make a genuine difference to patients –and not just replace paper with electronic processes.
“We need to put people at the centre of this, connect them to all the services they need to support their health, including hospital services, social care, community pharmacy and third sector support. If we capture data from around people, and those who support them – the devices they use, the wearables they have, the environment –we’re able to take that real-world information and communicate that between the citizen and the services.”
Covid-19 had led to a more strategic approach, he said: “There’s much more of a bigger picture, that whole system approach of how do we see health as a connected service.”
Moira Mackenzie, deputy chief executive at DHI, Scotland’s Innovation Centre for Digital Health and Care, said the pandemic had “cleared a lot of the public sector bureaucracy out of the way for a while”.
She explained: “[Issues] around procurements, regulations, systems and processes that normally took us months to navigate, were put to the side because there was a worldwide emergency. We also streamlined quite a lot of information governance processes.”
She worried that “some of those processes are starting to creep back again” - but was positive about Scotland’s “ambitious and bold” digital healthcare strategy.
“It is very much embracing the role of data, and how we can start to move into preventative early intervention type services – the kind of approach required to completely change our system, and move away from pretty much crisis management.”
Andrew Davies, digital lead at the Association of British Healthtech Industries, stressed that digital health technology benefited all parties. he told delegates: “Patients have better outcomes and better experiences, it’s a win for the system in terms of better efficiency, it’s a win for the companies having their technology adopted, and a win for the economy in terms of building on expertise.
“But is it all plain sailing? No, it’s not. We’re all grappling with how we implement these things at scale. What are the mechanisms we need to ensure we’re adopting the right technologies?”
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