Providers should be required to collect minimum data set – but it will take 10 years to transform the system, panel says

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Aged care operators would be required to collect a mandatory minimum data set – including data on care, finance, workforce and quality of life – under a proposition being tested by the Counsel Assisting that could dramatically increase the number of mandatory quality indicators – currently sitting at three – that providers must record.

For just over an hour-and-a-half, Counsel Assisting Eliza Bergin took the panel – Dr Rob Grenfell (pictured above right), the Health Director of the CSIRO’s Health & Biosecurity department; Associate Professor Maria Inacio (pictured above left), the Director of the Registry of Senior Australians (ROSA) at the South Australian Health and Medical Research Institute; Ben Lancken (pictured below, via video link), the Head of Transformation at Opal Aged Care and Louise York (pictured aboce centre), the Group Head of Community Services Group at the Australian Institute of Health and Welfare – through an array of topics around data and its uses in research – including what is missing from the Counsel Assisting’s list of four areas.

Prof Inacio – an epidemiologist who worked on the Royal Commission’s 2019 report on the use of psychotropic medication in residential care and will be delivering a new report to the Commissioners on the quality and safety indicators of care and how Australia compares to other countries this year – argued for the data from residential aged care assessments for ACFI to be routinely collected as well as from home care assessments if they were introduced.

Dr Grenfell – a public health physician and GP – added there should also be an indicator for loneliness.

“If you are a care provider, you should know where we are on a loneliness scale,” he said. “As a clinician, I want to know I’m doing a good job. I want to know I achieved what I set out to achieve.  As an aged care provider, you are looking at financial attributes you are achieving, but on the other side you are also providing quality metrics of care.”

Mr Lancken revealed Opal collects data on five key elements: customer data from online reviews and feedback and complaints; staff data on engagement and development; quality data on the effectiveness of improvements; clinical data; and commercial and financial data.

“We need to focus more on that both through more regular surveying of residents, the ability to publish more transparency consumer reviews to enable greater choice and for organisations to really effectively look at all of that data to inform continuous improvement,” he said.

In terms of workforce data, Prof Inacio said this would need to measure both staffing numbers and their level of education.

Under regulatory compliance, Ms York pushed for this indicator to cover hospitalisations, emergency department admissions, complaints and accreditation – but qualified that this would need to be risk adjusted for residents so facilities could be compared.

Again, Mr Lancken showed that Opal are ahead of the curve, with a new system for measuring quality of life called Gem: Building Precious Relationships to provide robust feedback loops for complaints.

“We are about to launch a brand-new customer survey technology across all of our care homes in the coming months,” he added. “That has been designed specifically to enable accessibility for older people, it has got some great inbuilt functionality to enable our residents as independently as possible to give us feedback.”

These indicators could be measured by ensuring providers only use accredited software packages which lay out the outcomes and indicators that would measure success for those outcomes, according to Ms York.

“One example where we actually set standards that are used to then accredit software is in the specialist homelessness services area where there has been a lot of agreement over time about what’s going to be measured and then subsequent to that information about what is actually going to be collected on the ground,” she explained. “And so, software suppliers get good, long-term warning about what about what needs to go into their software packages to be used by that sector and the AIHW then accredits those software packages.”

(Is this a vote for providers to use one software system across the sector?)

Interestingly too, Prof Inacio said collecting this data wouldn’t be impossible – ROSA has developed 12 quality indicators that could potentially be used based on the national data that is currently available in Australia.

“As a first step like you should focus on what you can do and then build on that, on the things that you can’t do by using existing data and that is getting the individuals quality of life estimates, the workforce … not currently publicly available,” she said.

There was some disagreement among the panelists about who should be involved in designing this minimum data set.

Naturally, Ms York put in a vote for the AIHW.

“My organisation has a legislated function of designing such data sets in conjunction with relevant stakeholders,” she said. “So, and what we would normally do in this situation is work with clinicians, policy makers, academics, people involved, consumers, customers, older people and potentially the ICT sector, workforce, to work through I think as Maria said what they want to know.”

But Dr Grenfell said the main group that needs to be at the table are the staff who will be collecting the data.

“They need to be engaged and they need to understand what it does to help them do the wonderful work that they actually do,” he said. “They won’t shift otherwise and that’s echoed in the experience we have had even with the most eminent clinicians in the acute sector and also through the general practitioner sector. If they don’t believe they need to collect it they will not collect it and your data sets will be meaningless.”

Prof Inacio added that the Commonwealth is still charge of most data collection which make it difficult – and expensive – to access from a research point of view.

ROSA currently has 30 open applications to secure data from the AIHW, with a full-time person working on them and several hundred thousand dollars outlaid.

“It’s not unsurmountable amount of work because we have done it but it is incredibly demanding and trying process,” she said.

Dr Grenfell agreed with the need for the Commonwealth to assume responsibility for data collection in aged care, using the example of the Closing the Gap report.

“The way that we have actually collected data … and have a national report card which puts responsibility back on the certainly those in power to actually act on where the differences or the lack of action is,” he said. “Closing the Gap has been an example of some achievements and some non-achievements; with aged care I would argue that that actually requires some degree of enormity or responsibility right at the top level.”

Commissioner Lynelle Briggs wasn’t deterred by this challenge however, saying the sector could become the leader in data collection.

“So, there’s an opportunity here, Ms York, for the material you come back to us with [information on how long it takes to access data from the AIHW], to have the aged care sector become the exemplar nationally,” she concluded.

There was also concern about which body would be responsible for curating the data – and if a new one is needed.

Dr Grenfell said a commission for aged care performance data should be considered as well as a larger body to conduct research.

“We are looking at an industry that is in dire need and we heard before about the failed attempts to get CRCs up,” he said, referring to the earlier panel. “The reason for that is that the industry is not engaged for many reasons in the idea of actually doing the research. So, it needs an overarching [body].”

Prof Inacio also said any organisation capturing data would also have to involved providers and the Government in a partnership approach, using the example of her time with the Australian Orthopaedic Association.

“It influences practices in orthopaedic surgery throughout the world and the way they have gotten is that the providers will voluntarily share their information about the surgeries and will get information back about how they perform and how they perform compare them to other surgeons nationally,” she explained. “They are the only ones who know who they are, but they come together once a year and discuss that information and share that information with each other and use that as a quality improvement tool.”

But the AIHW doesn’t currently have the resources to curate a minimum data set – and would need the extra data resources and funding to expand, Ms York stated.

Despite this stumbling block, both the Commissioners could obviously see the advantages.

“And if I might ask between you Dr Grenfell and Ms York, to bring in those extra elements would, I imagine, take some time,” Commissioner Briggs noted. “Are we talking four or five years or what are we talking here?”

Dr Grenfell said a more reasonable timeline for a digital transformation of the sector is 10 years.

“Having said that I guess we have probably failed I think in the acute sector and the primary care sector because I think I’ve been a practitioner now for over 30 years and we have been under digital transformation in my career in aged care,” he said. “So, I think it’s actually a lot longer and ambitious to say 10.”

Ms York agreed with this assessment.

Commissioner Tony Pagone wanted to know if Australia should be looking to other countries with minimum data sets, but Prof Inacio said while there are 11 examples overseas, Australia is out in front – because it already has the data.

“We just need to put infrastructure that is doing this. So, we are way ahead in that regards. And information is very good that we have so we could tap into that to build a system which these other places had to painstakingly develop it to implement it,” she said.

We know the Commissioners are prepared to think long-term – will this make the list of recommendations in the Final Report then?