Photo credit: Flickr/aldenchadwick - Testing blood sugar levels
BY HENRY LUCAS, RESEARCH FELLOW, INSTITUTE OF DEVELOPMENT STUDIES
[EDITOR'S NOTE: THIS BLOG IS PART OF THE FHS BLOG SERIES, EXPLORING THE IMPLICATIONS OF NEW TECHNOLOGIES FOR THE SELF-MANAGEMENT OF ILLNESS]
As Benjamin Franklin observed, “nothing can be said to be certain, except death and taxes”. While current evidence suggests he underestimated the ingenuity of the rich in side-stepping the latter, even they can only hope to postpone the former. And the rich are prepared to pay very large amounts of money to achieve that postponement, for a few years, a few months or sometimes just a few days.
While health economists and actuaries may devise sophisticated models to estimate the costs and benefits of healthcare, it is not only the rich, but the majority of individuals who will insist that no price is too high to pay to delay death or reduce the disability or suffering of themselves or loved ones. However, while the rich can take care of themselves, the rest of us rely on collective risk-sharing arrangements, through various forms of insurance or social welfare schemes. Unfortunately, as advances in medical technology provide new possibilities for extending life by managing serious illness – at an ever increasing cost – the sustainability of such schemes is often called into question.
If technological advances are contributing to the problem of healthcare funding, it seems reasonable to ask if they can contribute to a solution. One attractive proposition is that patient empowerment – providing sufferers with the knowledge and equipment required to take greater control over their own treatment – could not only prove beneficial in health terms but also in terms of reducing the cost of care by curtailing the reliance on expensive professional providers.
Engaging patients in self-management is not a new concept. In 2009, the leading UK diabetes charity estimated that diabetics managed 95% of their healthcare, most seeing providers “for a few hours per year”. Self-management included not only life-style behaviour change but insulin injection and routine self-monitoring of blood glucose levels to improve glycaemic control. The major changes over recent years has been the rapid development of reliable, user-friendly and relatively inexpensive medical equipment, and easy access to medical knowledge in forms designed for the general population.
For example, the Mobilicare chronic illness kit, developed in Brazil, includes instruments to measure blood glucose, blood pressure, oxygen saturation, and lung function, a heart monitor, a pedometer, and a medical scale. More recently, the Healthwatch V healthcare phone is a single instrument which, with suitable attachments, can undertake the same range of tests and also measure body fat, provide specific advice on diet and exercise and remind patients when to take medication. All of these functions and more (even an ultrasound scanner!) will soon be available on the most popular smart phones. Users of such phones can also access or download digital medical encyclopaedias and disease-specific guides, some produced by international agencies including the WHO, some by national agencies such as NHS choices, and some by commercial organisations, for example WebMD.
Are such innovations relevant for a low income household in the developing world, struggling to cope with serious long-term illness? A recent influential paper argues that they offer one of the few possible options in resource-poor environments, where there is no possibility of adequately funding a provider-based model of care given the demands of increasing numbers of patients with chronic disease. The authors propose “‘full self-management’ as an alternative for low-income countries, facilitated by expert patient networks and smart phone technology”.
Central to this proposal is the concept of ‘inverse information asymmetry’. Contrary to the traditional assumption that patients are at a disadvantage in dealings with providers because their medical knowledge is limited, it is suggested that those who live with an illness for many years, or even decades, can become much more knowledgeable about their own condition and its implications for themselves and their families than any provider. Patients, or more plausibly, groups of patients confronting similar issues would use mobile technology to ‘commission’ care from a range of providers. This would involve activities from the use of a personal mobile phone, now available even in some of the poorest households, to seek advice from fellow suffers, ‘expert patients’ or sympathetic qualified providers; to self-monitoring using collectively owned, smart phone-based medical equipment; to remote diagnosis from a supportive provider or NGO.
Is this scenario realistic? There are interesting examples of patient-centred self-help groups. The CBO MoPoTsyo in Cambodia supports almost 140 ‘patient information centres’ for individuals with diabetes and hypertension. These are run by ‘peer educators’ under the supervision of program managers who are also diabetic. They provide targeted behaviour change information, monitor health status and support access to qualified doctors and pharmacists when required. MoPoTsyo maintains a central database of patient records but as yet makes limited use of mobile technology.
With almost no resources, icddr,b have encouraged the formation of a number of community based ‘clubs’ for those with diabetes and/or hypertension in the Chakaria region of Bangladesh. Having been provided with initial support in terms of diagnosis and advice, most of these at least seem to have remained active since late 2010, with members checking their blood glucose and blood pressure at regular meetings and consulting graduate physicians by mobile phones when needed.
Many HIV/AIDs programmes have pioneered the establishment of community and patient groups, primarily focusing on the promotion of lifestyle change and long-term adherence to treatment. However, in recent times there have been a number of apparently successful proof-of-concept exercises that have engaged communities and PLWHA in ART provision, a couple of examples coming from Mozambique and Kenya.
The key issue, as with many such innovations, would appear to be whether such groups are linked to intermediaries who are not just trusted but trustworthy, minded to work with ‘the bottom billion’ and not simply exploit them. It seems plausible that innovative technologies can further enhance the activities of established, successful patient groups and possibly allow the ‘scaling-up’ which has become the new holy grail of health interventions. It is entirely unrealistic to see technological advances as being the primary factor in determining whether such groups emerge and prosper.