The power of self-management to target gaps in chronic disease care

The time of healthcare professionals is limited, but systems often rely on them as the principal means to help patients with chronic diseases. Ben Hargreaves finds Partha Kar, an advisor to the UK’s NHS, advocating a different approach – one where patients take the lead.

Healthcare systems are currently going through a period of reflection on how to serve the needs of the greatest range of patients possible. This is an ongoing challenge, and one that reared its head again during the pandemic, as questions over vaccine equity arose. A long-standing issue has been clinical trial diversity, which is rapidly gaining momentum and has seen high profile backing, such as through Walmart’s recent emergence in the clinical trial space. At a more fundamental level, even the words used in scientific communication are facing scrutiny because of how they can affect people’s health outcomes.

Partha Kar, national specialty advisor on diabetes with NHS England, recently gave a presentation at the annual meeting of the European Association for the Study of Diabetes 2022 that centred on access. The talk was entitled, ‘Evolving technologies and therapies: For the many or for the few?’ that covered whether breakthroughs in diabetes treatment and management were reaching all of those in need.

As Kar had a wealth of data to work with through NHS Digital, he was able to outline where there were gaps occurring in the system, why that was the case, and the action needed to be taken to address these discrepancies. Though his analysis focused on the UK’s healthcare system, the fundamental lessons drawn from his research are broadly applicable to different healthcare systems.

The importance of data

The body tasked with managing UK data is NHS Digital, which utilises the data collected from various sources, including medical records, patient surveys, and administrative databases used to manage bills or care. As a result, Kar outlined, “One of the things we are blessed with in the United Kingdom is data. Lots and lots of data.” One task is then to organise and utilise this data; a way in which to do this, Kar explained, is to divide people based on a ‘deprivation index’. This is created through understanding how much people earn, what part of the country they live in, what they do for work, and other areas. Once this index is created, health outcomes can be measured against levels of deprivation.

Through this data, not only can broad health outcomes be measured, but specific questions can be asked about groups of society. For instance, whether those who are deemed the most deprived or who are part of a specific ethnic group are less likely to receive certain treatments or certain technologies. Kar made the point that with the UK’s NHS being a free system and an example of ‘socialised medicine’, the assumption would be that there should be no disparity of access, as all treatments and technologies are free to all patients. However, Kar’s work found that this was not the case.

Unequal access

Kar likened individuals’ access to healthcare as being similar to the global situation that emerged with COVID-19. When effective vaccines were first progressing into late trials and showing efficacy, there were fears over the development of ‘vaccine nationalism’. Essentially, this saw wealthier countries pay to gain early access to vaccines and treatment, which Kar explained showed that “deprivation levels, as a country or as a system, matter quite a lot.”

Despite the UK’s health system offering equal opportunity to receive free treatment, the data showed that deprivation was fundamentally linked to access to treatment and technology, and therefore to different health outcomes.

“If you come from a poor part of the United Kingdom, your chances of getting an insulin pump are lower than somebody who comes from a richer background,” Kar explained. Going beyond deprivation to highlight differences in access to technology based on ethnicity, he added that a black child in the UK is 50% less likely to receive a continuous glucose monitor compared to a white child.

Overcoming biases

In his capacity as advisor to the NHS, Kar provides counsel on national policy and aims to understand why there are different levels of access based on deprivation and what can be done about it. One answer to the first point is relatively simple: time, and therefore money, to most people. The decision to attend a face-to-face meeting with a healthcare professional (HCP) in order to receive a treatment or technology that will help your long-term health should be a relatively straightforward one. For those people in the relatively privileged position to take time away from work to attend the visit, this remains an easy decision. For those people whose employment is precarious, or does not lead to high earnings, or who cannot pay for the parking required to attend the meeting, the decision is not so simple.

The issue here is not one that HCPs can fully address, being a broader, systemic issue. However, recognising that for some people the decision to attend a face-to-face meeting is challenging is one way to address biases that can exist which hinder access to medical support for those people considered deprived. Another common bias is that the elderly population will not be able to use technology, a ‘myth’ that Kar counters was largely dispelled during the pandemic, when the use of smart devices was one of the few means for this demographic to keep in contact with family and friends.

Three planks

By accepting that certain biases exist and then being able to counteract them, Kar stressed that another shift that needs to take place is in understanding how best to help the patient. He outlined what he sees as the “three planks” of care for chronic diseases: self-management, peer support, and access to HCPs. Healthcare systems largely focus on the third plank, access to HCPs, Kar noted, but identified that the lack of HCPs means this cannot be relied upon as the sole solution. Instead, he stated that technology that is able to tackle the first two points are where the most significant improvements can be made. If patients can be encouraged to look after their own health by HCPs through technology, alongside the support of their peers, then the limited contact time with HCPs can be mitigated.

He outlined that the UK had just experienced its best type-one diabetes results for 15 years by “getting people to live with diabetes better every day.” This was achieved through providing patients with the tools to self-manage their condition, such as through the rising number of diabetes management apps. With a limited number of HCPs who have limited time, the ability for patients to be supported by technology to improve their glucose levels and glycaemic variability represents a large step forward. In the case of peer-to-peer support, such solutions can provide help to patients in a more readily available manner than access to HCPs, from those who are living the same experience and challenges.

However, he cautioned that going forward, technology and new treatments need to be designed to reach beyond “just a few people who have time on their hands,” because that involves simply “making the good a bit better.” What is more important, Kar concluded, is “targeting [the patients] who will get the best outcome.” This means broadly realigning healthcare systems to address the gaps that have arisen in care, and targeting the patients that stand to benefit the most from solutions that encourage patients to engage with their own health.