Table 1 Selected illustrative quotes by interview informants

Status quo of the Irish HIS

• One of the things that became obvious to us right from the start of this is that we have quite good data systems on the acute side. But when it comes to the community side of service provision, or privately provided service, they are much less well developed and much more scattered. And this might be something that you have seen in other areas as well. (1)

• And so, I do think that there is a frustration with respect to health information at the ground level associated with a lack of centralized thinking about health data and access to it. So, I think we need a singular entity, as a single office, that is given the remit to oversee health information management, and that would include standardization of data sets, KPIs [key performance indicators] and initiatives. That doesn’t mean they have to manage it, but that they would oversee it from a quality point of view or standards point of view. (5)

• The nursing homes data is good. That’s because it’s a policy that’s gone back 10 years now. It’s particularly good disaggregation, such as age, gender, location, average length of stay… that’s brilliant. But then there are other areas of health data that don’t have that coverage. (3)

• The key policy driver here, also around health data, currently is the Sláintecare programme. And that’s pretty much the only show in town. (5)

Data linkages and care pathway monitoring

• When a patient goes through the system, it is not something that is collected, or should I say connected. Pathways of care are not captured in data. (2)

• Access to data is probably the biggest problem we have in the Irish health system right now, who actually owns it. Also, there is no connection or sharing or flowing of information, whether that be from the acute to the community sector, or even within the community sector. (3)

• It’s difficult to measure outcome measures when you don’t have a data infrastructure that allows you to do that, especially not to link episodes of care. (2)

People-reported data

• There’s certainly some, like patient experience survey. We would see that as a good model of data collection and accessibility for both the policy-maker, the service provider and the public. And we’d like to see more expansion in a similar kind of way, I suppose. Yeah, it has, I suppose it has its own challenges, and that it was a model that had to be developed. But it does lend itself to good governance, to transparency to everybody knowing what they can use the data for. And I think that’s, I think that's really, really important. (4)

• So, there’s the national inpatient experience survey, which is now well established. And that has been through a couple of annual cycles. It’s usually repeated every other year. So, this year, it got paused, because obviously, it wasn't appropriate to run it in the middle of pandemic, but hopefully it will continue next year. (5)

Role of the COVID-19 pandemic

• COVID-19 has actually forced an awful lot of people to re-evaluate how they interact with the health system, because nobody wants to go to the hospital, and this has huge data implications. (5)

• So, you know, health professionals in the system are becoming more competitive due to COVID-19 and they’re wanting to know more. Also, how they compare, as opposed to just looking at their organization. (2)