EHealth: an ethical time bomb?

The health services industry is on the verge of a digital revolution. Right now, health services around the world are digitising patient data and paving the way for smart technology that can identify triggers that lead to diseases and help doctors to formulate interventions.

On a basic level, eHealth systems are no more than digital versions of patients' files. This improves efficiency for health services, but the real opportunity lies in third-party access to the detailed patient data held within these systems such as medical history, diet, exercise levels, response to treatment and genetic information.

This could be as important for medicine as the discovery of antibiotics – helping to change the emphasis of healthcare from treatment to prevention – but there are risks involved. Instead of facilitating medical progress, detailed personal data can be exploited for financial gain.

When major pharmaceutical companies are given access to detailed patient data, conflicts of interest are liable to arise. Rather than using insights to optimise the effectiveness of existing treatments or develop cures and interventions, such data could inspire the development of new drugs that are more focused on maximising usage and profit.

But to what extent are patients aware that their data can be used in this way? Can big pharma, data analysts and health services really be trusted to use patient data ethically? Are patients willing to ignore these risks in exchange for better services and life-saving treatments? These are not conundrums that we will face in ten or twenty years' time, they are questions that need to be answered today.

The benefits

Singapore is already leading the way in the digital healthcare revolution. The government's Health Cloud project won a prestigious DataCloud Award in 2015, beating hundreds of submissions from around the world. In Singapore today, more than 40,000 healthcare professionals use the H-Cloud to access consolidated patient records, which is expected to save millions of dollars over the next decade. There is also the potential to save and improve countless lives by making drugs and treatment more effective and reducing the huge burden that healthcare places on governments around the world.

Digital eHealth systems such as the H-Cloud are just the first phase. A fully open platform that is accessible to patients and third party companies would allow the integration of more detailed lifestyle data and open up limitless opportunities for healthcare innovation. Existing technology such as personal health trackers, mobile phones, or smart scales that can track weight and heart rate could supply eHealth systems with more granular real-time lifestyle data. In-home scanners that log mobility or analyse urine – which are already being tested in Singapore's homes for the elderly – can help to bring healthcare out of hospitals and into our everyday lives. For example, if data shows that reducing visceral fat for middle age men to a certain percentage can cut the risk of a heart attack or stroke, then every at risk individual could be informed and given personalised daily tips via a mobile app on how to lead a more healthy lifestyle. Over time, recommendations for healthy levels can be refined depending on the visceral fat levels and other related indices of heart attack victims.

Flu affects millions of people every year and, according to the World Health Organisation (WHO), costs the global economy up to US$167 billion each year in lost workdays. A flu app that plugs into a global patient database could help to significantly reduce this cost. The app could compare each user's body temperature and heart rate against historical data and identify the stage of infection and the best course of action for recovery. It could even warn people when they have been in contact with infected people during the contagious stage or help them to avoid areas of high infection – achieved by calculating the likely time period when sufferers were contagious, retrieving location data from their mobile devices for that time window and cross referencing with other users who visited the same locations at the same time. At a macro level, such apps could help scientists and governments model how viruses spread and help prevent pandemics.

The risks

To make these potential benefits a reality, corporations outside of the healthcare industry need to access patient data. The more open and freely accessible these detailed patient data sets are, the greater chance there is that triggers for diseases can be identified – but this also increases the risk of exploitation.

Big pharma companies have been accused of burying potential cures for diseases that require long-term pharmaceutical use, and therefore generate huge profits. Whether or not such accusations are founded, it is true that these companies profit from drugs that treat symptoms for a lifetime. If simple preventative measures were discovered that reduce the instances of lucrative ailments such as obesity, depression or diabetes, big pharma could stand to lose billions. There are also risks outside of the healthcare industry. Corporations that buy patient data may have other areas of business that could indirectly profit from the analysis of medical data.

Regulation

A 2016 study – Health on a Cloud: Modelling Digital Flows in an E-health Ecosystem authored by Ravi S. Sharma and Felix Lena Stephanie of the Nanyang Technological University, Singapore – set out to model the eHealth ecosystem using game theory. It identified six key players: patients, providers (health services), payers (insurers/state), third-party vendors, info-mediaries (organisations that broker eHealth data) and regulators.

While the study concluded that all stakeholders stand to benefit from a developed global eHealth ecosystem, it isn't clear yet whether governments, health services or self-regulating corporations are best placed to regulate the industry, or indeed how such a complicated flow of information can be effectively regulated.

The WHO addresses some of these issues in its Legal frameworks for eHealth report in 2012, based on its second global survey on eHealth conducted in 2009. The report is largely concerned with regulations that protect patients' basic rights to privacy. Unsurprisingly, the report found that legislation is moving considerably more slowly than technology – as it tends to be introduced on a retrospective basis. Even when basic privacy rights are in place, this type of legislation isn't actually concerned with what the data is used for, only that the privacy of patients is protected. This means anonymising data by removing identifiable details such as name, address or date of birth before information is passed on to third parties.

However, deals between health services and big data corporations do not always require data to be anonymised. The National Health Service (NHS) in the UK has been working with Google's artificial intelligence subsidiary, DeepMind, to create software algorithms that can predict and help to prevent the onset of kidney diseases. As part of this collaboration, DeepMind was handed full patient records covering five years of history for 1.6 million patients. This included sensitive details such as HIV tests, abortions and drug overdoses – and identifiable data including full names, addresses, birth dates and email addresses. Sharing of this information is fully legal and part of the NHS's standard information sharing agreement.

Although DeepMind is heavily restricted on how it can use the data, the potential for misuse is clear as Google is a company that generates the bulk of its revenue from consumer data and advertising. There may be indirect benefits that arise from analysis of the data – the more Google learns about human behaviours such as consumption and motivation, the better placed it is to create advertising products that target these behaviours. Is it really in the public interest to give the same companies who profit from advertising access to our most detailed and sensitive information?

Patients may ultimately be powerless to prevent anonymised data from being sold on by public health services, but this compromise must be made in order to allow medical science to progress. Where personally identifiable data is involved, legislation needs to account for the fact that there may be a conflict of interest for certain companies, and bar their access to this data. Health service users and the general public must be fully aware of the progress and practices relating to e-Health so that they can make more informed decisions about using and supporting services.

 

About the author

Gemma Calvert is the Director for Research & Development at the Institute for Asian Consumer Insight and Professor of Marketing at the Nanyang Business School, NTU. A pioneer of neuromarketing, she helps companies to break into Asian emerging markets through deeper understanding of Asian consumers using brain and psychology-based research methods