The ethics of emergent knowledge intermediaries

Flickr/nyayahealth - Bi-weekly health catch up at a community
health centre

By Paula Boddington, Hertford College, Oxford University

[Editor's note: This blog is the final in the FHS blog series Exploring the Implications of New Technologies for the Self-Management of Illness]

The use of new knowledge intermediaries in the public health sphere gives rise to a host of ethical issues. These include questions about fairness of access; the quality of the technology used and information generated; who has access to and control of such information; the impact of commercial interests within a healthcare setting; and regulation across borders. How do we address all of these from within our current frameworks of ethical thinking in medicine? In fact, can we?

Medical ethics has historically focused on the interactions between professionals and individual patients. It has thus been concerned with the professional’s role and responsibilities, ways of minimising harms and maximising benefit to the patient, and respect for the patients' rights. These questions make sense within an ethical framework focusing on the patient-doctor diagnoses and treatment model. But with the use of new technologies for the self-management of illness, the traditional model of medical ethics is beginning to flounder.

The current model of medical ethics has of course developed over time and in relation to changes within the health system it scrutinizes. It currently faces challenges from many quarters, including the following points of strain:

The model focuses on discrete interactions between a professional and an individual patient. Challenges then arise, e.g. with genetics, where the nature of genetic information means that the patient’s information may be relevant to biological relations.

• There has been an implicit assumption that standard treatment consists of intervention for a condition which is then cured, with less attention then on chronic conditions and long-term care. This is a bigger challenge now that the burden of disease is shifting towards long term conditions.
• There has been a focus on medical care, rather than on public health (although there has been more work on ethical issues in public health in recent years), and as Slim Slama pointed out in his blog, a focus on disease rather than social and personal aspects of health and illness.
• There has been a focus on consent to treatment, and on patient confidentiality. Behind both of these lies an implicit model of information-giving and of action. Crudely, the professional is the agent, the patient the one upon whom actions are performed; the professional has the medical knowledge, the patient receives this; and all this within a limited time frame, in an enclosed informational setting.

Self-management of chronic illness challenges the old model of medical ethics in a myriad ways. The patient may become an expert about their own disease. Indeed, ‘the patient’ is not someone undergoing a discrete episode of illness, but more manifestly is a person living a whole life, connected to a community of others.

Furthermore, the use of technology to manage illness means that information is no longer primarily in the hands of a medical professional, but is dissipated across a much larger system, including commercial interests. Medical agency is dissipated to the patient, as technology can assist and enable them to manage and make decisions about their own condition without reliance on a doctor. In fact a professional may have taken no direct part at all in the process.

New technologies may offer highly effective means of providing both tailored and general health information. But with this, there are also many hazards in trying to provide adequate education and real understanding. In short, it is no longer just in the standard ‘medical encounter’ within which ethical issues arise and are addressed. Technology may help potentially billions of people to manage chronic conditions, but new medical ethics needs to consider the much more dissipated agency and fragmented information that it brings.

Interestingly, the problems now facing the traditional model of medical ethics, even within a standard clinical setting, are often remarkably similar to those faced by widespread use of technologies within a public health sphere. For example, there is a growing realisation that drug regimes prescribed are, overwhelmingly, adhered to only very poorly. It’s become clear that problems with communication between provider and patient impede delivery of effective treatments that the patient both wants and can manage effectively. Hence, addressing these issues of understanding and communication is an essential key to improving healthcare, even when there is apparently close interaction between provider and individual patient. Part of the answer might involve the use of technologies, including those which help to advance the patient’s understanding of medicine.

Medical information is now increasingly shared in both formal and informal markets. We need to understand fully how such information is controlled and accessed, whether it be by medical and research professionals, commercial interests, or by patient groups. With such dissipated agency and diffuse systems of information, circumscribed systems of medical ethics with clearly articulated professional roles and responsibilities are no longer going to apply. Ethical ways forward will involve making sure that the power to act, the power to know, and the power to understand is put firmly in the right hands those of the most vulnerable, and those needing care to manage health and illness.

(video) Innovations on the ground: Implications for ICTs in patient self-management

This series of interviews with participants in a recent workshop on patient self-management hosted by IDS at the Brocher Foundation explores how information and communication technologies are being used to help people cope with chronic diseases in Cambodia, Bangladesh and Uganda. From Cambodia, we hear from Maurits van Pelt of MoPoTsyo, a patient peer group for diabetes sufferers in Cambodia. Dr Mohammed Iqbal from icddr,b talks about chronic disease clubs in Chakaria, Bangladesh. And William Roy Mayega discusses advances in Uganda on treating chronic diseases.

The ethical implications of new diagnostic technologies: how personal should we get?

Flickr/samsungtomorrow: New smartphone apps track everything
from physical activity to calorie intake

BY ANNIE WILKINSON, POST-DOCTORATE RESEARCHER, 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]

Medical historians will tell you that diagnosis has always been a moral concern and that diagnostic categories are as socially constructed as they are medically objective. Western medicine has a long tradition of applying disease labels to people and behaviours which deviate from the supposed societal norm. Famous examples are homosexuality and female hysteria. More recent examples are alcoholism, obesity or ADHD. Technologies of various sophistications have been employed to prove the existence of these ‘diseases’.

Diagnostic categories will always be a site of contestation, often linked as much to contemporary standards of morality and normality as to medicine’s capacity to detect disease. But with the global diagnostic industry expanding to be worth $49.2 billion in 2012, and with emerging NCD markets in the BRIC countries behind much of that growth, it is timely to ask if there are developments in diagnostics that are bringing new social, moral or legal concerns to the fore. And how might these play out in the emerging markets?

Genetic testing is an area of innovation which has provoked much social and ethical debate and public attention. Angelina Jolie’s double mastectomy made front pages while the US Supreme Court considered whether a bio-tech company could patent genes that cause breast cancer. The news that Google has invested significantly into a company, 23 and Me, which will offer genetic profiling for $99USD with the longer term aim of building vast databases of human genetic information – of potentially enormous research and economic value – will ensure such debates continue. In this field of ‘techno-ethics’ the issues are startlingly dramatic, raising questions about how we define disease, how we deal with risk, and how we value life and decide who can lay claim to it.

Yet another sea-change is underway which has drawn much less moral scrutiny: as Henry Lucas’s earlier blog detailed, devices are now available to identify, define and monitor both communicable and non-communicable diseases at a patient’s side, in an instant. Rapid Diagnostic Tests (RDTs) can already identify HIV or Malaria in remote rural clinics, and there is considerable excitement about the potential of similar technology to improve developing country health systems. A recent BBC Horizon programme profiled a few of the hundreds of apps and gadgets that are produced each week to monitor health in daily life from blood pressure readers and pedometers to more sophisticated apps that track your social interaction to predict your mental state or tell your temperature from a video image.

The developments in this field of medicine are uncontroversial: the narrative goes that in both developed and developing country settings there has been significant misdiagnosis of disease because appropriate technology was not available. Now there are accurate tests that make medicine more scientific and specific. This is the era of ‘precision’ or ‘personalised medicine’. In this narrative, more highly personalised information is undoubtedly a good thing. The BBC’s Horizon programme trumpeted advances in diagnostic and monitoring equipment as the ‘new medicine’. It was suggested that this new medicine could dramatically reduce, if not prevent, many NCDs by putting the power of knowledge into patient’s hands and reaping the reward of their subsequent behaviour change. New diagnostic and monitoring technologies are painted as the next silver bullet, with the potential to have as dramatic an impact on global health as antibiotics and vaccines.

As diagnostic and monitoring technologies pervade more and more of our everyday lives, some people are beginning to question the ethics of this trend towards ‘ubiquitous medicine’ albeit primarily in Western contexts. The increasing collection and storage of health information by non-traditional actors, such as ICT providers, invites a clash of ethics cultures. The established norms of information and media ethics are different to those in traditional medical ethics and they need to be aligned.

In many low and middle income countries, where neither widespread access to well stocked rural clinics or smart phones is ensured, these debates can seem of dubious relevance. However, with an increasingly engaged biotech industry, and the might of ICT giants like Google and Microsoft working to improve internet access in remote rural settings, they are sure to arrive in some form or another relatively soon. As such, it is worth considering what visions of health and improvements to health systems they rest on and what the consequences of these visions might be.

Of concern is the assumption that information about disease status is empowering and that knowing and being able to monitor one’s health status equates to having the agency to change behaviour to avoid or control chronic conditions. Underlying these ideas are two very Western notions: that health is the responsibility of an individual and that the future can be controlled. This has serious implications.

As Slim Slama’s blog in this series has pointed out, the underlying causes of NCDs and many chronic conditions (perhaps misleadingly labelled ‘lifestyle’ diseases) are broader socio-economic trends such as urbanisation, rising inequality or global systems of food production and marketing. Without changing these underlying conditions, will more information about health status actually make us healthier? Or is it a plaster to patch over the surface of the problem without facing the more difficult societal ills? Putting the power to diagnose and monitor in people’s hands will undoubtedly help some, but will it be equally empowering? There must be a way of ensuring that the increasing specificity of diagnosis does not serve to individualise health so much that its social determinants are lost. As some have suggested perhaps we should think seriously about broadening out the concept of diagnosis to include social determinants of disease.

At Brocher the problem of applying conventional Western medical ethics to chronic disease or developing country settings was noted (this will be explored in more detail by Paula Boddington in the next blog). Many developing countries tend to have plural health systems, and, although Western biomedicine is increasingly common, health has not always been narrowly attributed to biomedical mechanisms or the individual. It may be that keeping in mind broader concepts of disease and diagnosis that recognise the social determinants of health would be a more effective and sustainable way of addressing the ticking time bomb of NCDs, as it would build on existing local approaches to health. For sure, more precise and personalised information can serve to improve health, but the focus on individuals should not overshadow the impact and obligations of wider society.

New technologies: Causing and solving the healthcare funding crisis?

 



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.

Using an ecological approach to tackle the growing burden of chronic non-communicable disease

BY SLIM SLAMA, GENEVA HEALTH FORUM PROGRAMME DIRECTOR, UNIVERSITY HOSPITALS OF GENEVA

[EDITOR'S NOTE: THIS BLOG IS PART OF THE FHS BLOG SERIES, EXPLORING THE IMPLICATIONS OF NEW TECHNOLOGIES FOR THE SELF-MANAGEMENT OF ILLNESS

A man grills sausages in Khayelitsha township outside of Cape Town,
South Africa (photo credit: Jeff Knezovich)

As co-morbidity and the prevalence of chronic non-communicable diseases (CNCDs) continue to rise globally, it is hugely important to examine what this trend tells us about the health systems we have built and how these systems will respond in the future.

The challenge for a person to manage a chronic condition goes beyond the disease and symptoms. At an individual level, living with a chronic condition often means that we move from a state of complete wellbeing to a situation where acute exacerbations, relapses and recurrent events push people to constantly adapt their life according to the course of the disease. Living with, and managing, such a condition also entails finding a balance between the biomedical, functional and social spheres. Traditionally, we tend to focus on disease and care rather than on what people value in terms of autonomy, functionality and social participation.

From a healthcare delivery perspective, long term care for chronic conditions differs significantly from the reactive and episodic model of care that characterises many of the traditional ways health services are delivered for acute conditions. To create a strategy to tackle this growing burden placed on health systems we should therefore adopt a holistic approach that incorporates the various dimensions that shape health seeking behaviour, patient-provider interactions and social participation.

 

Creating a comprehensive policy strategy to address the increase in the prevalence of CNCDs

CNCDs constitute one of the most challenging global health issues in the coming decades requiring a fundamental shift in the way we look at health, development and global governance. Moving at the macro level entails grasping what the main drivers of chronic, non-communicable diseases are and the policy options to tackle them. While considering this, one needs to keep in mind the following trends of global health policy development:

• Health strategies tend to be developed outside of countries where health problems exist
• Approaches to health tend to be selective rather than comprehensive
• Health programs are linked to economic development but are often serving ideological/political purposes
• The underlying determinants of health are systematically ignored

The treatment and care of patients with CNCDs require sustained action at all levels of the six World Health Organisation (WHO) building blocks of heath systems: service delivery, health workforce, information, medicines, financing and governance.

Employing an ecological approach

Given the complexity of addressing the burden on CNCDs within a health system, employing an ecological framework would provide a holistic approach that factor in the six WHO building blocks while maintaining the individual’s perspective at the centre. These ecological models have been pervasive in public health history and have a number of added benefits in that they:

• Address complexity
• Capture dynamics and interactions
• See health as shaped by different levels, dimensions or determinants
• Identify key transitions shaping human health
• Spot key actors and institutions both making and breaking healthcare
• Place human health within biological, material, social and psychological processes

The figure below is an example of an ecological model of what could be seen as a comprehensive strategy to tackle CNCDs. The main drivers of NCDs are represented on the left side of the framework. Whilst people suffering from chronic diseases may have been genetically predisposed to diabetes or cardio-vascular disease, biomedical and lifestyle explanations cannot account for, among other things, why so many people around the world are becoming physically inactive and eating unhealthy diets. But as a result socio-economic factors are increasingly shaping the chronic disease epidemic.

Source: Bovet, P., & Paccaud, F. (2012). Cardiovascular disease and the changing face of global public health: a focus on low and middle income countries. Public Health Reviews, 33(2), 397-415.

Urbanisation, mechanisation of work, global marketing influencing social norms and lifestyles are the root causes of the CNCDs burden mediated through biological and behavioural risk factors. Here, the ecological approach has highlighted that focusing on intermediary or distal risk factors without considering the wider environment in which individual choices are made would be counterproductive and ultimately unsustainable.

So, what next?

In a pluralistic – and often under-regulated environment – there is a skewed response toward quick fixes that favour investments in healthcare provision without considering other policy options aimed at tackling the determinants of CNCDs. At the same time, the lack of resources and investments in many low-income countries (LICs) makes it very difficult to envisage how a government would be able to respond to the growing demands placed on a healthcare system, while donor countries still have a tendency to favour options that call for a focus on preventive measures.          
                                                       
After years of neglect, world leaders recognised the compelling case for action with the declaration at the United Nations meeting on non-communicable diseases in September 2011. Since then, the WHO has been developing a Global Monitoring Framework and a Global Plan of Action that would support member states tackling non-communicable diseases and realise the commitments made by adopting the Political Declaration of the United Nations General Assembly for prevention and control of NCDs.

However, despite growing evidence on what works and identification of cost-effective interventions, political leaders in LICs still face difficult decisions about where to invest resources along the causal chain of disease.  While global prescriptions and normative statements have flourished, the operationalisation and contextualisation of the global CNCD discourse is still a work in progress.

Exploring the implications of new technologies for the self-management of Illness

Flickr/Texttochange

By Sophie Marsden, Health Systems Programme Officer, IDS

In the immediate future of 20 years, all dots in healthcare systems and service delivery mechanisms will become linked via wireless and mobile infrastructure.
- Workshop delegate

Is the quote above an overly optimistic and indulgent love note to modern technology, or is it an informed, almost prophetic, statement that captures the numerous possibilities to transform healthcare through technological advancement? Whichever interpretation you side with, it does force you to consider the effect that the development of technology — and specifically information and communication technologies (ICTs) such as smartphones, the Internet and diagnostic technologies — will have on our current healthcare systems and how this could transform the way we manage health at both an individual and public level. ­

At the beginning of June, the Institute of Development Studies convened a three-day workshop titled ‘Exploring the social, ethical and legal implications of new information and diagnostic technologies for the self-management of illness’. The workshop focused on how people living with chronic communicable and non-communicable diseases in low-income countries (LICs) were beginning to actively engage in health seeking behaviour and were using ICTs to manage their conditions. The event was hosted and part-funded by the Brocher Institute, a Swiss foundation based in Geneva. A small group of healthcare practitioners and experts in health policy, law and ethics based in Uganda, South Africa, Cambodia, the Philippines, Bangladesh and the UK were brought together to share their wealth of experience, knowledge and insight into healthcare provision in low-income countries.

There is now an unmediated access to diagnostic technologies, various markets for treatments and healthcare advice, and numerous professional and non-professional providers. In essence, medical pluralism is challenging the traditional bio-medical model within global healthcare. Many of the technological innovations in healthcare flourish in countries with highly organised and established health systems. Patients are able to apply an expert lens when digesting the new information that this technology provides and they continue to comply with the established protocols and rational prescribing within the health system. However, as outlined in a presentation on patient empowerment by Dr Josephine Van Olmen from the Institute of Tropical Medicine in Antwerp, the necessity of managing chronic illness does not necessarily lead to empowered patients. Instead, patients in low-income countries may suffer from a lack of access to a good quality and trusted health system due to the associated cost, a lack of resources or there simply not being the infrastructure in place within their country.

On the second day delegates shared fascinating examples of how patients in LICs with chronic conditions were accessing information from a number of different sources such as community healthcare workers, non- government organisations and peer networks, alongside traditional state services. Dr Mohammad Iqbal from icddr,b described how Diabetes and Hypertension health clubs had been established in Chakaria, Bangladesh to support people in making informed decisions about selecting healthcare from the growing market of informal providers. Maurits Van Pelt also talked about some of his experiences and the challenges he faced in setting up the MoPoTsyo patient information centre in Cambodia, which aims to support patients living with diabetes in poor communities by making them more informed and active in managing their disease.

Telecommunication networks and the ever-expanding reach of the internet means that health information is more widely available than ever before. Combined with innovations in diagnostic and treatment technology, this has led to a proliferation of new healthcare products. Smartphones with health apps and mobile diagnostic technologies provide the ability to manage aspects of chronic illness while Internet provides patients access peer support groups and consultation services to seek out advice and information. As a result, commercial markets for new healthcare-related products, traditionally driven by pharmaceutical companies but increasingly by other businesses, are already well established and continue to expand.

This creates a new power relationship between knowledge intermediaries and patients with chronic illnesses operating as consumers of healthcare. Dr Paula Boddington from Oxford University led a discussion on the ethical implications of the emergence of these new knowledge intermediaries. In a profit driven market there exists clear opportunities for lay actors -- this could be a business selling diagnostic technology or an individual selling alternative medicine -- to exploit of a lack of knowledge and awareness and to manipulate consumers into buying health products and services. As noted by the group, the lack of regulation of healthcare products means the quality and safety of these products can be highly questionable. There was consensus among the group that regulations and guidelines need to be in place to manage the quality, safety and use of ICTs and knowledge intermediaries.

A number of interesting questions were raised during the workshop and many issues demand further exploration and thought. As a result, this is the first post of a six-week blog series written by workshop partipants that draws out some of the key issues. We hope you're looking forward to the following as much as we are. Future posts include:

• Slim Slama – “Using an ecological approach to tackle the growing burden of chronic non-communicable diseases”
• Raoul Bermejo- “Chronic non-communicable diseases; from Global policies to local implementation”
• Henry Lucas- “Innovation in healthcare; Using ICTs to self-manage illness in lower income countries”
• Annie Wilkinson-“What are the ethical implications of using diagnostic technologies?”
• Paula Boddington-“Addressing the ethical issues raised by the emergence of new knowledge intermediaries in the public health sphere”