eHealth for long-term conditions: time for a health revolution.
Our general perception of healthcare, in the West, has three basic steps:
The ‘do something’ step has a number of familiar options in it, including taking a rest, light exercise, seeing your GP, having tests, taking medication or some other form of more significant medical treatment.
There is a universal understanding that we ‘get better’, eventually — and that this process is sped up by assertive healthcare and medical support.
However, about 30% of us don’t get better and are left with one or more long-term conditions, such as chronic pain, diabetes, heart problems, neurological problems, injuries and often disabilities. These people are presented with an unusual challenge, as their current model of healthcare doesn’t terminate:
When people don’t get better they often cycle back to medicine seeking more tests, more interventions, more reassurance and more monitoring. The shock of not getting better is so foreign that it can be very hard to move forwards. In addition, we don’t really have a social model of how to move forwards — we talk about and celebrate people fighting on and never giving up, but we don’t have a common narrative for how we ‘live with’ a significant health problem in a way that is meaningful and without suffering.
The cost of patients with these conditions (30% of patients) accounts for 70% of all healthcare costs in the UK, and likely similar in other countries. These numbers are on the increase. The reason? Medicine gets better and better at keeping us alive — but with that comes increased longevity and associated complex conditions and disability.
The demands on healthcare will ultimately mean that the 3 step model will be recognised to be outdated and in fact causing our health systems to collapse. This is already in sight, with healthcare costs soaring worldwide and the UK’s health service already £billions in debt. A new model is needed:
A fourth step — ‘Adapting and coping’ with health problems will require a society wide shift in how we see health. We’ll get there, we won’t have a choice — too many of us will either ourselves, or our family members, be coping with long-term conditions that are incurable. Experience will create the need for solutions.
The first solution will likely be an emerging narrative / understanding of how someone lives with a long-term condition. How they accept their condition, learn to be compassionate to themselves, learn about and then adopt new health strategies that are not about cure but about living (such as pacing, relaxation, mindfulness, positive thinking etc) and design new lifestyles to fit new limitations.
I predict that the market demand will be so fierce, as formal healthcare increasingly fails to provide the unhelpful and cyclical second step (‘do something’) that new approaches in healthcare will aim to support patients into these ways of coping (this being my own role, partly, in the NHS) and the private sector will catch on and provide a whole new range of activities that relate to new lifestyle options and access to the disabled.
This shift for healthcare leaves one crucial component exposed — a variable that likely explains why the 3-step model is still King despite an open recognition that it is problematic.
Patients can get worse. They can cope worse, become depressed, become less fit, experience more pain, use more medications and even die. With this in mind, medics and health professionals are sensibly reluctant to send patients away with the goal, “take care of yourself”. This accounts for the 6 or 12 month follow-ups provided to all patients in some services, independent of need. The Consultant has no way of knowing their status and so it’s perhaps safer to see them all, even if only 10% have declined. A safety net approach.
eHealth offers a solution. A fifth and final step.
Embedded solutions (eHealth designed to dovetail with current clinical models of healthcare in a specific region) are potentially able to provide this safety net, remotely. Patients can self-monitor, through a range of technologies, and therefore provide their clinical teams with up-to-date information on any variable that is clinically relevant. The clinical team is therefore always with the patient and responsive to need, only when it arises.
In turn, the value of these technology solutions is tiered (healthcare often uses stepped care approaches, providing lighter touch solutions through to heavier solutions dependent on responsiveness). So, patients can expect their eHealth to provide:
- bespoke education that is responsive to their changing needs and specialized to their condition
- evidence based ‘best practice’ translated into technology, which means their eHealth solution is an extension of medicine and not a tokenistic option
- evidence based suggested interventions, for self-management
- automated arranging of clinical contact when need is identified — meaning the team chases the patient and not the other way around.
- family member involvement, when appropriate — with examples such as partners completing data entry or distant family members having access to health reports if consent is provided.
- and more…
eHealth, I would argue, is essential in supporting high risk patients to unburden the health service with the knowledge that they are being cared for and that the anxiety of being forgotten is no longer feasible:
Our understanding, in society, of healthcare is slowing going through a revolution. We are facing increasing long-term need with no feasible solution for the current approach to healthcare to meet this need.
eHealth provides options for these people, but only in a model where being coached to adapt and cope is put in place, to quell the anxiety and distress that emerges from not getting better. eHealth is not a ‘treatment’ but a digital safety net, where being out in the world, living an adapted life — people are confident that if they get worse, the health service will react quickly. This means that a patient doesn’t need to cling to their appointment slots, being the current model of a safety net.
Health services / development teams that wish to innovate in this arena, using eHealth, should look at how steps 4 and 5 are developed together — alongside patients.
Both are critical and symbiotic.