Table 3 Exemplar issues raised by interview participants on data linkage

Benefits of data linkage for viewing patients’ journeys through the healthcare or cross sectoral systems

“We need better data linkage. Trying to have a look at what happens to an older person through the system, it’s improving, but it’s very difficult. How many services they access, hospital admissions, transition to nursing home, looking at predictors of those things. A whole lot could be done for people if we could build up profiles of risk factors, and that would be better for the (healthcare) system too. You can’t do that until you have a more complete dataset.” (Interviewee 7)

“I like data linkage… There are complex systems within multiple organisations, like health, justice, education; all these different systems that run separate things. I think it’s really important to understand a person’s journey through those different systems. I think the only way you’re going to do that is your data linkages… (It’s needed) to make decisions about policies around certain subjects, and how you deal with those populations… without that, they’re (policy-makers) just going blind.” (Interviewee 2)

Barrier: Lack of uniform approach and reticence to share data

“(Health data linkage) at a high level across the country would be ideal, because everyone is covered. But as it is now it's case by case and organisation by organisation, and it's all: ‘Do you want to share?’ And they say: ‘No’ or ‘Under these conditions’ so it's an ongoing battle to get the information you need.” (Interviewee 6)

Barrier: High time and cost to access linked data

“Each tranche of data to link is about $10,000 (Australian dollars)… I think it took about eight months to get data I requested, which is not too bad considering the stories I’ve heard… My PhD student waited three years for data on immunisation at post-code level from the Health Department.” (Interviewee 1)

Barrier: Insufficient departmental resourcing and knowledge limiting use of government data repositories

“I think a big limitation (of data linkage) is data sharing within the state (government)… (It’s) a really tough thing to do… But the issue is that Data Linkage (i.e. government Centre for Data Linkage) is such a small department for such a massive need. The other issue is… they expect that the requester has the ability to analyse that data. I would say less than 1% of DHHS (state government Department of Health) people have that skill. So, while I think data linkage is good and it’s a really valuable tool, it’s not really designed, currently, to allow a policy person or a manager, at the government level, to be able to use that data meaningfully.” (Interviewee 2)