Event report: The impact of data poverty on access to healthcare
On Wednesday 8 March, the Data Poverty APPG held a panel session on The Impact of Data Poverty on Access to Healthcare. The session focussed on how access to, and the efficiency of, the UK’s healthcare systems are affected by data poverty.
The event was hosted by APPG Treasurer Lord Clement-Jones and Chaired by APPG Chair, Darren Jones MP. Attendees heard from political, NHS and industry stakeholders including Matt Warman MP, Member for Boston and Skegness and former Minister for Digital, Culture, Media and Sport; Sue Lacey-Bryant, Chief Knowledge Officer, Health Education England; Jason Tutin, Digital Inclusion Manager at Leeds City Council; and Emma Doyle, Head of Digital Strategy at NHS England.
Please see below for minutes of the session:
Lord Clement-Jones began by welcoming attendees, then handed over to Darren Jones MP.
Darren Jones MP extended his own welcome and set out the APPG’s aim in this calendar year to deep dive into particular sectors where fixing the issue of data poverty can make the most impact. He introduced the panel’s first speaker, Matt Warman MP, who he praised as being helpful on the issue of data poverty when the Minister responsible at the Department for Digital, Culture, Media and Sport (DCMS).
Matt Warman MP began by saying he approached this issue from the perspective of both a former Minister and someone who is married to a doctor. He recounted that when he asked his wife for her thoughts on how digital access to healthcare could be improved, she said she wished that when a patient showed up for treatment, either she or they would be able to see online what prescriptions they were on. He moved on to speaking of the correlation between how up-to-speed a patient is with their treatment, and their wealth, setting out how those with more challenging lives struggle most with healthcare access. He described his frustration when a Minister at seeing the public assume that the NHS had access to their patient records, when in fact data is not being shared within the NHS. He related how during the pandemic, the Health Secretary had tried to improve data sharing, but this had rubbed up against public concerns over GDPR. He also told attendees that during his own time in Government, he’d looked at templates to enable internal data sharing while mitigating these concerns – an effort which still hasn’t gone through, despite the best efforts of NHS England. He summarised by saying that overall, health is an example of an area where data poverty is really tangible, as well as one that raises huge concerns if we get policy wrong.
Darren Jones MP thanked Matt Warman MP, calling his contribution a great illustration of the complexity of debate in this sector. He said he has two hospital trusts in his constituency which are only just able to talk to each other, while there is also the end user’s ability to access healthcare to consider. He raised concerns over how a patient can book an online appointment if they have no data, or access records without being stuck on a landline. He then introduced Sue Lacey-Bryant, Chief Knowledge Officer at Health Education England.
Sue Lacey-Bryant began with the UN definition of poverty, including the determinant of one’s ability to access services. On this, she said it was important to look at skills as well as ability to access healthcare, which is something Health Education are focussing on. She called the affordability of data a big barrier to healthcare, and noted people with limiting conditions are the most likely to be unable to afford data – an issue which affects younger adults too. She also highlighted rural connectivity as a big problem in this regard. In terms of health literacy, Ms Lacey-Bryant expressed concerns over low levels across the board. She said only 43% of adults in England are unable to understand health information when presented in text format – a figure which rises to 61% when numbers are included. As a result, she expressed the need to make our online health information reliable, usable and safe. Next, she turned to the World Health Organisation, which is beginning to talk specifically about the digital determinants of health. She said this was important to Health Education England too, which has led to them partnering with NHS England and UK libraries on a health literacy initiative. This has led to 15 pilot schemes in a bid to determine which works best. While these pilots are still ongoing, she said they had so far found that embedding health literacy in pre-existing services is effective, while there is also a need for targeted interventions to avoid what she referred to as information redlining. Ms Lacey Bryant also warned of the dangers of misinformation, warning it will grow unless we foster a systematic, evidence-based approach to ensuring digital access to healthcare. She called on all attendees present to combine their efforts and expertise in order to put all their different pieces of the jigsaw together and use this to form a basis for creating policy.
Darren Jones MP thanked Sue Lacey Bryant and introduced Jason Tutin, Digital Inclusion Manager at Leeds City Council.
Jason Tutin began by saying Leeds City Council have six full time digital inclusion officers, who they see as an investment to help solve issues such as those mentioned by the previous speakers. He reinforced Matt Warman MP’s point that those in poverty are the most likely to struggle with healthcare access and will also be the people least likely to have the time and capacity to gain digital access. He told attendees how he and his team are trying to help local organisations understand the importance of digital inclusion and enable them to help people. He commended this approach as being both communities led and also helping councils to reach as many people as possible while also struggling with the cost-of-living crisis. Turning to digital transformation, he pointed out that a lot of money is often put behind these projects, but comparatively little is set aside to help people access them. As a result, Leeds Council have set aside a pot of money for this purpose. They are also looking at local workforces, with Mr Tutin making the point that if nurses are using foodbanks, it’s likely they will also be in data poverty. To conclude, he said national, regional, and local leadership is needed in tandem to help make inroads against data poverty both in the healthcare sector or more widely, and that this is a model that is working for Leeds Council supported by more national-facing bodies such as the Good Things Foundation.
Darren Jones MP thanked Jason Tutin, then introduced Emma Doyle, Head of Digital Strategy at NHS England.
Emma Doyle began by explaining to attendees that she is a generalist on digital strategy with an interest in health, but who had been briefed by colleagues with a digital healthcare specialism. She said the NHS’ current delivery aim is for health services to be a multi-channel offer that meets the need of individuals. As part of this, digital is included as a means of helping people who struggle to access traditional services, as well as something that helps free up resources for those who need face to face care. She accepted that this aim may currently seem far off for those who are struggling to access GP care in any capacity but reiterated NHS England’s recognition that data poverty plays a massive role in accessing healthcare. She described how people in data poverty are faced with a ‘double whammy’ of struggling to access services in the first place, then these issues exponentially growing impact as their health gets worse and makes them even less able to gain the digital access they need. She supported this with research from the US Government that shows people without high-speed internet access suffer worse health outcomes. She said a whole government approach is needed to address data poverty in healthcare, starting with those areas where there are strong evidence-bases, such as when there is a need for someone to constantly monitor their condition. She told attendees that instances such as this mean data poverty is no longer a luxury but a necessity, and supporting digital access should be viewed in the same way as giving an asthmatic an inhaler. She said the NHS is currently developing a digital inclusion framework due to be published in May, that should be a useful, practical framework to help local services improve digital inclusion and design their services to help people access healthcare. She summarised by calling data poverty incredibly important in terms of access to services, but also as a wider determinant of health.
Darren Jones MP thanked Emma Doyle and opened the floor to questions to the audience.
Bryan Scott from the APLE Collective said in Scotland they have a different system but same issues. He called for focus on skillsets and systems, saying the APLE collective researched primary care during lockdown and the overwhelming sense was that even if they had internet access, people weren’t motivated to use online health services because they were difficult to use and often impractical. He highlighted the need to keep the human factor involved as well.
Rhona Topaz, also of the APLE Collective, agreed with Bryan Scott. She asked what steps can be taken to prevent misdiagnoses online. She also called for focus on people with learning disabilities and pensioners.
Kat Dixon, Data Poverty Fellow at the Good Things Foundation, asked what can be done to ensure there are better privacy regulations for care home residents, where internet is typically provided as part of a shared group.
Jason Tutin first addressed Bryan Scott, agreeing everyone should have equal opportunities to use digital access in the way that’s right for them, and that sometimes this isn’t using digital at all. He agreed with Kat Dixon that care homes are a mixed picture and need sorting, and that Leeds Council are introducing initiatives on this. He said it makes budgetary sense to do this in a whole systems approach, and that it is also good to encourage people online as face to face is more expensive.
Sue Lacey Bryant stressed that the purpose of digital technology is to take the machine out of the man. She made the point to Bryan Scott that lots of people prefer to engage with health services digitally in the first instance. She added that an economic perspective is critical, and that stakeholders need to make the case to government that if you join up all the health directorates digitally, then you’ll save a lot of money. On this, she said, we only have pockets of evidence for this currently, so there’s a need to bring it all together.
Emma Doyle agreed that often, services are made digital when they don’t need to be. As a result, there is a need to look at need and response, wherein policymakers identify an unmet need, then the correct response to it – sometimes this will be digital, sometimes it won’t. She also pointed out we the need to back up digital services with proper skills and access, arguing it’s unrealistic to build an app and then have people automatically use it. Instead, there need to be whole new pathways of care that exploit digital opportunities.
Matt Warman MP said he was part of the team that funded the Liverpool 5G trial, which subsidised connectivity for local GPs. He shared that he wasn’t sure why this job fell to him at DCMS, but that he wanted to do it as an example of how joined up government should work. On this, he called for more cross-departmental collaboration. On the question of the benefits of digital access more broadly, he said the main benefit within the NHS accrues to staff themselves, allowing them to work better and free up resources.
Leigh Smyth, Community Board Chair at the Digital Poverty Alliance, said she agreed with everything said so far, especially Kat Dixon’s point about care homes. She asked what the panel’s approach on making the NHS multi-channel would be.
Nigel Clarke, Chair of the General Pharmaceutical Council said he would echo Matt Warman MP’s point, calling it inexcusable given modern IT that healthcare professionals don’t have access to their patient’s records. He said the NHS needs continual improvement in order to even sustain its levels of service, and as part of this patients need diagnostics at home. He recommended the APPG get regulators on board with their asks, as these are hard for ministers to ignore.
Sarah Parkes of Age UK asked how can we motivate people to use online healthcare? She also asked how best to ensure a joined-up approach where providers of advice, data, and devices are connected?
Helen Milner, CEO of the Good Things Foundation asked about macro-level funding. She said the value of fixing the digital divide is £22bn by 2028. She recounted how she recently gave evidence to the Lords Digital Committee, where peers were frustrated as they know the benefits of digital inclusion, but government siloes are standing in the way of unlocking it. She noted Matt Warman MP’s 5G pilot as an example of this and asked why government is so dysfunctional.
Jason Tutin replied that he thinks they’ve cracked funding in Leeds, as they get it from a range of departments. He said leadership is needed at a local level to bring this all together. In terms of motivating people to go online, it is important to make sure it is a safe, reliable space for people.
Sue Lacey Bryant brought the question of motivation back to one of trust. She said this is crucial in interacting with digital services and that the most trusted in our communities are nurses, librarians and doctors. She told attendees we need professionals such as these to work in partnership with communities.
Matt Warman MP said on funding, it’s hard to break established siloes but one way to do this is via devolution. He said Jason Tutin was right to say you can apply to lots of different funding pots, but devolution would be easier and more efficient. On data sharing, he said the independence of GPs is great in some ways, but the BMA need to take a leadership role in sorting access data, which they haven’t so far.
Emma Doyle agreed that people often aren’t motivated to engage with health, and said we need to motivate people online in other ways, in order for the health benefits to open up to them. She told attendees there is a need to look at the NHS’ digital inclusion framework to make sure there’s something on devices, data and skills to make sure they offer the full package for online access. She also said there’s a message for those at the centre of policymaking, which is that there are so many NHS and associated online platforms that need to all be brought to the same level of digital capability.
Darren Jones MP thanked everyone who asked a question and directed those who had been unable to contribute to email the group’s secretariat.
Lord Clement-Jones thanked speakers, APPG members and attendees for joining the session, saying the debate could have continued for far longer. He said it was great to hear the proposed frameworks and solutions for increasing digital accessibility and health literacy, and how these can be tied into a national strategy. In particular, he noted access to records seems to be an open goal, and that more widely, digital inclusion is critical in gaining the full benefits of state and society.
Written submissions from attendees for the APPG’s consideration include:
From Dave Donaghy, Vice Chair of the Digital Divide SG at BCS:
Engineering, and in particular software engineering, is not just about developing software tools and mobile phones apps but is rather and engineering discipline: engineering is, by its very nature, aimed at providing technological solutions, but solutions to human problems. Are we taking enough advantage of professional bodies like BCS, engineering councils etc, to use their engineering skills to make sure that new processes take proper note of human dignity etc when defining and rolling out new digital services like domiciliary diagnostics?
From Tim Stranack, Founder and Regulatory Director at Community Fibre:
With my INCA Chair hat on I think there are a number of connectivity providers who would be happy to provide low cost or even free connectivity to those facing health issues if we were more easily able to identify the households within our network footprints that were in need. Health professionals are often ideally placed to identify this need and it would be great if connectivity could form part of a social prescribing package. This is an area that I think INCA members might welcome a conversation on with the appropriate health professionals. Another issue that was not discussed today but has been significant this winter has been bed blocking by patients in recuperation, who might accelerate their recovery by being at home, but can't go home due to lack of suitable monitoring. This is another area where connectivity and suitable monitoring devices might be able to help and perhaps also worth further discussion.
From Oliver Sleeman, Business Director at Healthwave:
Healthwave have made it our mission to involve people as services transform, so everyone can access the best healthcare available to them. We recognise that you can have any number of solutions to help tackle data poverty, like the ground-breaking data bank of the Good Things Foundation. Despite this, unless our colleagues, who are closest to the action (across hundreds of organisations) and those in our society that need support are well informed, then uptake of these solutions and therefore investment, is at risk. We’d certainly echo the views of the delegation for more investment in engagement, implementation and information sharing.