Data engineering project joins the dots on healthcare data
Making decisions in a healthcare environment requires access to up-to-date, complete and accurate data. Accessing a complete picture of a patient is a challenge in the current healthcare system, where these data assets exist in disparate locations.
“We’re using data engineering to construct digital assets that don’t currently exist. They’re all in disparate sources. But with the Reconnect project we’re hoping to enable clinicians to make decisions they couldn’t do before,” explains Prof Mark Roantree, team lead of Reconnect at Dublin City University.
To illustrate how the Reconnect project would work, the team, which is working with Prof Patricia Kearney at University College Cork, are initially focusing on diabetes care. Diabetes is a relatively common chronic condition that affects different areas including a patient’s eyes, heart, and feet. The problem is that all of these elements live in different locations within the healthcare system, and not every clinician or doctor a patient sees during their care will have access to all of their data.
“What we are trying to do is bring these different health data sets together. So if you are an individual with diabetes, and you go to see your GP, or you go to see your endocrinologist, or you go to get your eyes checked as part of the national screening service, you might assume that your GP would have access to this data, but that’s not the case. At each separate healthcare encounter you’ll be asked your name, you’ll be asked your date of birth, and those data sets all sit separately,” explains Kearney.
With all this relevant data existing in separate data silos, it makes it more difficult for the healthcare professional providing the care to make informed decisions. It also presents challenges for the Health Service Executive (HSE).
“At the moment, we don’t know where the people with diabetes in Ireland are. We can make inferences based on data from other countries, and using data, for example, from the CSO, but we don’t actually have access to the pertinent data. So throughout the project, we’ve been really focusing on how we can change things and make things better for the person living with diabetes, for the healthcare professionals who are providing care to them, and then for our healthcare system as well. Our goal is to determine how we create that actionable knowledge so that we can actually change the way that the health services are designed and structured,” says Kearney.
Singular vision
People with diabetes can develop problems with their retina, issues that can lead to blindness. In a separate project, that illustrates how the work of Reconnect could be put to use, Kearney explains how she analysed data demonstrating that diabetes is the leading cause of visual impairment among working age people in Ireland. “Importantly, this is preventable. And now we have a national retinopathy screening programme. But with any screening programme, one of the most important things is that people go to their visits. Relevant data can help us make those visits more accessible. We can use the data to identify areas where there is a higher proportion of people with diabetes and base the screening services at a location convenient to them. We should be thinking about how we structure our service to make it as easy as possible for the individual’s experience.”
To that end, Roantree and his team use data engineering to extract the pertinent data from system A, B, C and so on. Then the team knit those pieces of data together to form one consolidated digital asset. In the case of a person with diabetes, this might contain their basic details including address, up-to-date information on their diabetes care, including if they have attended their screening tests.
The team at Reconnect are facing three distinct challenges with their project: technical, legal and cultural. The technical challenge is in hand, according to Roantree. “The data integration process is well understood; it’s been around for a long, long time. The main issue is around the area of data quality, but it’s manageable. It’s within our control. We have a box of tools to do this type of thing.”
As for the legalities of data access, this too, is largely understood and there are rules and guidelines around that, says Kearney. “It depends who is the data controller, who’s the data processor. There are rules around that, but it can be challenging within the HSE to establish who the data controller is but you need to establish that to then put the appropriate permissions in place. One of the things that we have done is move towards using data sets where that process has been gone through, and where systems exist to apply to access the data.”
Access & governance
Roantree and Kearney agree that the most pressing challenge is cultural because different parts of the healthcare system are further along the path of data access and data governance. For now, the team believe they are making inroads.
“We’re in the right rooms, speaking with the right people. While we haven’t gotten a yes yet, we haven’t gotten a no either, we’re very close,” says Kearney.
“Our plans are ambitious. Ideally, what we want to see is a person with diabetes goes in to see their GP, and the GP has access to all other relevant information about their individual patient, which means that they are better able to make informed decisions about that patient’s care.”
Reconnect is currently in the Grow Phase of the National Challenge Fund, a €65 million research fund established under the Government of Ireland’s National Recovery and Resilience Plan (NRRP), funded under the EU’s Recovery and Resilience Facility, coordinated and administered by Research Ireland.
It joins three other teams in the Digital for Resilience group, which is focused on transformational societal and economic impact from disruptive digital technologies. These four teams will have the opportunity for additional funding in the final phase of the programme, where prize funding of €1 million is on offer.
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