A recent HSJ webinar highlighted the need for transparency and effective data sharing as integrated care systems tackle health inequalities

Integrated care systems have a statutory duty to “have regard” to reducing health inequalities and many have focused on this. 

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But to do this well, they need to understand what the problems are that they face, to be able to identify the groups and communities they want to help and understand whether they are making a difference.

Good data and a shared version of “the truth” with partners is key to this – but is not always available. An HSJ webinar, in association with Snowflake, looked at the challenges ICSs can face in getting and using data to tackle health inequalities.

NHS England has recently published data on health inequalities information with details on what organisations should collect, analyse and publish and how this should be cut – by age, sex, ethnicity and level of deprivation.

The need for near real-time reporting

Sally Gainsbury, senior policy analyst at the Nuffield Trust, said many organisations would already be doing this but added: “It’s useful to have national guidance about what’s expected, and that there is an expectation that organisations will explain what they are going to do about the inequalities which are revealed. It really brings some clarity to the area that perhaps wasn’t so much before. NHS organisations are swimming in data. The challenge is to make that both meaningful and actionable.”

She added that sometimes actionable data to address health inequalities would be very small scale and specific to a service and groups who were receiving or not receiving it.

And after a period when there seemed to have been a move away from focusing on socioeconomic deprivation as a drive of healthcare and health status inequalities, she suggested this marked a change in approach.

But is data sharing a reality? Snowflake NHS account director Janet Broome said it is happening in some areas. “We’ve got customers who are data sharing really, really, effectively. Manchester is a great example of that. We’ve got a number of customers across London as well, who are sharing data between trusts and throughout their integrated care board.

“People are not used to sharing data so it’s about adopting new technologies and an acceptance of new technology. And we’ve seen far too many big IT programs which have failed. So how do you actually get that right?”

Ms Broome added that much of the data that was collected was “unstructured” – such as clinical notes and images. Being able to open this up and combine it with other data such as indices of social deprivation could produce the actionable insights Ms Gainsbury had referred to.

But this required systems which could integrate, she continued, and requests to share data needed to be dealt with promptly.

Balancing access to personal data and addressing deprivation

In Greater Manchester there had been a lot of work to ensure that controls had been put in to ensure that data sharing was robust, secure and safe, said Graham Beales, deputy director of data insights and intelligence at Greater Manchester ICS. GPs had been very engaged with only one practice not signing up. But there were also benefits for the practices which would get additional tools to manage their data.

“This is not only adding directly to patient care as we go, but also improving the quality of the data,” he said. The data could help to pick out the people who would most benefit from a consultant appointment, for example, which helped get the greatest benefit out of the available capacity.

But will the recently-awarded federated data platform make much difference? Ms Broome said it could complement what was already in place in different areas but could not be mandated. Greater Manchester has already been developing its plans in line with the FDP but also wanted the capability to work with other areas such as social care.

Ms Broome added: “I think the importance of being able to have near real time reporting is so essential for this and there is a divide currently. You see in the centre a lot of NHSE’s data … is weeks out of date. And yet what we’re seeing at trust and ICS level, and particularly in Manchester, is near real time.

“So there’s going to be a big shift to demands for the centre to actually deliver near real time back down to the ICSs.”

But Mr Beales pointed out how rapidly things had changed. “Before the pandemic we had a very small and limited number of data sets that were nationally available. We’ve now got a huge amount of additional data sets that have been brought in … we’ve never had as much data as we have now. But with those new data sets that are coming on board, we’ve got to resource and give time to our partners to get all of the data into a digital ready space together.”

But with more data on health inequalities may come calls for more transparency. Ms Gainsbury said: “Transparency is really important for making the case for change, because inequalities are a political issue. Inequalities are about some groups in our society who have not been getting what they need. Some groups get more than others, some groups get less, and that’s political, and it’s uncomfortable.

“There’s a reason why organisations might not want to be transparent about this. But if they’re going to be able to make the case for change, they will have to be transparent. I’ve spoken to commissioning organisations who’ve been nervous about publishing inequalities data for emergency care, because they worry that that could create a backlash against some groups who might be seen to overuse emergency care.

“They will need support from the centre and from politicians around doing that and then making progress in addressing those.” Ms Gainsbury added that ICSs needed to be prepared for and embrace controversy.

Data governance can be another issue but Ms Broome was quick to point out there had been much good work done on this by the NHSE safeguarding department, for example around data sharing between NHS, police and social services. But there was still a need to streamline some of the processes ICSs needed to go through, she added.

But Ms Gainsbury pointed out there might be some resistance around access to very personal data which might help to pinpoint the most deprived patients. But she said the NHS might need to get smarter about picking up pockets of deprivation in predominately affluent areas.

Ms Broome added that during covid the NHS had developed the ability to track the spread of covid to within a mile of someone’s home so the capability to drill down to small areas was there.

The webinar Using data to tackle health inequalities is now available on demand.

If you had previously registered as a viewer for the event, you will be able to view the recording immediately. To access the recording, visit here and click play.

If you have not previously registered, you can do so here to get access to the recording.