Why the relationship between clinicians and patients should matter to engineers

There is growing emphasis on medical devices that help people to control and manage long-term diseases, such as continuous glucose monitoring (CGM) devices for diabetes. For some, these technologies are empowering, while for others the technology can be difficult to use and understand, undermining health outcomes and relationships with healthcare professionals. Developers and commissioners of medical devices should design and deploy medical devices that benefit all patients.

The government’s Equity in medical devices independent review highlights how healthcare technologies can have negative impacts. For example, the report describes how unintentional racial bias in the performance and clinical impact of pulse oximeters, which measure oxygen levels in blood, has resulted from development and calibration based on testing on light-skinned test subjects. 

In the UK, it’s well documented that people particularly from Black and South Asian communities are disproportionately more likely to be affected by health inequities than other communities. Diabetes UK’s 2022 workshop on addressing health inequalities in diabetes care has further helped to identify that some social categories drive health inequities. It has published recommendations for researchers and funders about how to address this key aspect of inequity.

Addressing people's feelings about wearing medical devices

In the University of York’s Equitable Technology Lab (ETL), we are interested in equity of medical devices. We have been working with patients to explore attitudes and views of CGM devices. Although at an early stage, our work with Type 1 diabetes (T1D) patients in Sheffield and Scarborough has already highlighted that age and gender-related factors affect how patients use and feel about CGM devices. For example, young women express apprehension over the wearability of their devices in public while elderly patients have reported difficulties navigating and managing data and digital interfaces.

Cognitive and physical factors, such as neurodiversity and hearing issues, can also make devices difficult to use and can contribute to experiences of inequity. This work, together with current literature, suggests that inclusive participation that recognises intersecting social categories such as gender and race can actively address such unintended consequences and inequities in healthcare technologies. Inclusive participation will ensure that otherwise marginalised groups are adequately and meaningfully involved in developing healthcare technologies that cater for their needs.

However, this is not the whole picture. To fully address inequity in medical devices, we need a more nuanced appreciation of how technologies shape and are shaped by the context in which they are deployed and used. For example, at ETL our work has started to show that the way CGM technologies are used can mould the relationship between clinician and patient. This arises from how the data, information, and decision support systems associated with CGM devices are largely geared towards the needs of clinicians rather than patients. In some cases, this can lead to a problematic distinction between the ‘expert’ (clinician) and ‘nonexpert’ (patient), which can undermine relationships with healthcare professionals. 

Meeting the needs of patients and clinicians 

The inequities and unintended outcomes that patients often experience when using medical devices are frequently informed by a disconnect between the needs of clinicians and those of patients. A key driver here is that a scientific understanding of health and disease frames the data gathering and interpretation by medical technologies. However, this tends to overlook the contextual differences that are important in how patients experience and respond to their condition and to healthcare interventions. Put simply, patients do not think about their disease in the same way that clinicians do – or indeed the way other patients do. 

This problem is increasing in scale and complexity. Within UK healthcare, the notion of patient self-management supported by technological innovation is becoming increasingly dominant as a viable, cost-effective solution for reducing the NHS’s operational burden. This has driven new relations between patients and health professionals, which today includes clinicians, consultants, nurses, and local patient advocates. These relationships are increasingly mediated by medical devices and digital systems. 

Inevitably, technologies (such as CGM) inform how patients are understood by clinicians and healthcare practitioners. And these technologies also change how healthcare professionals interact with patients and the terms on which they seek to regulate their behaviour. Our findings are revealing how technologies are unintentionally altering these relations, removing the opportunity to appreciate the patient’s own views on their condition or particular circumstances. 

There are unintended consequences of all this. One – a key finding – is that many patients work collectively to amplify their voice in relation to medical devices. For example, many of our research participants have turned to advocacy groups, such as Diabetes UK, for solidarity and support in navigating the unexpected outcomes associated with managing their condition. This has included peer-to-peer advice on how to understand and use the data produced when operating their medical devices.

Making sense of medical devices

Our initial research with local Diabetes UK groups has indicated that these groups help patients share their knowledge and expertise of self-management with others across different contexts. This has allowed patients to better manage their devices, providing them with both technical guidance on operation and maintenance, as well as emotional support for the psychological impacts. Indeed, interviews with patients highlight that the emotional aspects of medical devices have significant implications for how well they are taken up and used. However, in the clinician–patient relationship, patients may not share factors such as aesthetic appeal, data overload and responsiveness to lifestyle, because of the lack of importance that clinicians assigned to them.

Our work suggests that the disconnect between the needs of clinicians and patients at the heart of these data-driven relationships should be highly visible in healthcare interventions. This requires rethinking how medical devices can preserve clinical expertise, without diminishing patients’ voices. Recognising this presents a design challenge for technology developers and engineers. It requires understanding clinician–patient relations alongside a wider consideration of how patients interact with, and make sense of, medical devices. Designing equitable medical devices will, then, require inclusive participation, but this must be part of a broader understanding of engineering focused on how social and technical arrangements combine to deliver equitable outcomes for patients.