The second healthcare revolution has made a wonderful impact on the burden of disease, decreasing both mortality and morbidity and that looks likely to continue. However what has emerged, sometimes as a result of people living longer with multiple health problems, is what has been called the burden of treatment best described by the team that developed the concept in their original article.
“Treatment burden includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals.”
Source: Gallacher, K., May, CR., Montori, VM, Mair, FS. (2011) Understanding Patients’ Experiences of Treatment Burden in Chronic Heart Failure Using Normalization Process Theory. Annals of Family Medicine, 9 (p.235-43).
People appreciate that the complexity of modern healthcare means that they no longer have to relate only to ‘their GP’ and then to ‘their consultant’ should they happen to be referred to a specialist service but they are likely to encounter a number of different departments and professionals, all of them focused on the common aim of helping them reduce the burden of disease, but perhaps unconsciously contributing to the burden of treatment.
There are many practical problems that people face in accessing health services and, until recently, almost all this access required face-to-face encounters. One of the benefits of the Covid pandemic has been that transformation has taken place in both general practice and specialist care from being solely face-to-face encounters to be a combination of face-to-face and digital encounters and surprisingly, to the professionals at least, many people have found that digital encounters are just what they needed to solve some particular problem quickly and easily.
Some people define the modern hospital as a set of departments united only by complaints about car parking albeit car parking and even reaching the hospital are one of the main causes of the burden of treatment.
Often overlooked or minimised, it is important to recognise that the burden of treatment can contribute to inequity. What can be seen if specialist care or primary care provision is related to the level of deprivation of the section of the town where a patient lives is that those people from the least deprived sections of the population get more treatment than those from the most deprived even though the latter may have a greater level of need. Although people who are wealthy and have high powered jobs feel under pressure, their lives are often of a simplified nature from a practical point of view than the person whose income is very low. A person who may have lost a day’s income taking their mother to a clinic appointment only to be told that someone had forgotten to organise the MRI and to ask if she could be brought back next week at the same time; both experiencing the burden of treatment.
These hotel factors however are often complicated and can be compounded by clinical contributions to the overall burden of treatment.
It is important we do not romanticise the past, but it is important we also recognise the past was simpler with a higher proportion of staff being full time and fewer professionals being involved, even if the person only has one condition.
However, the challenge of all-encompassing clinical management faced by a person with one or more long term conditions is now considerable and it is important to say that the individual is the only one constant in their care and therefore the safest thing is for the mix of clinicians to manage all the information about them and of course that can only be done effectively with the use of digital techniques and systems.
It is also important to look at ways in which digital resources can be used to minimise unnecessary visits to a healthcare facility and if such a visit really is necessary to provide help and support for the person, for example to find car parking or book a car parking slot and to minimise their necessary expense that may be associated with lost work because the visit takes a day instead of half a day. Additionally, concatenating treatments where possible, across various conditions for optimal use of a patient’s time is helpful, however the anxiety of having a number of professionals who do not seem to know what the others are doing adds to the burden of treatment.
In the 20th Century we reduced the burden of disease. In the 21st Century we need to reduce the burden of treatment using the forces of the third healthcare revolution, for example by giving the person called the patient access to all their health records.