Telemedicine and data exploitation | Privacy International


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This piece is a part of a collection of research that demonstrates how data-intensive systems that are built to deliver reproductive and maternal healthcare are not adequately prioritising equality and privacy.

Telemedicine describes the vast range of applications and technologies used to provide and manage healthcare remotely.

Telemedicine as its most basic refers to the transmission of data from a patient to a healthcare professional through a range of electronic platforms (devices, apps, etc.). This means that the electronic platforms themselves have the ability to access the patient data.

However, telemedicine can be more than a communication tool. It can be combined with sophisticated technology in services ranging from remote monitoring systems to virtual assistants to support care.

The first appearance of telemedicine can be traced back to the 19th century. Since then, the use of telemedicine has been driven by the increasing availability and use of internet and communications technologies across the health sector, including for reproductive and maternal care.

A survey conducted in 2014 by the WHO’s Global Observatory for eHealth (GOe) to analyse the progress being made in the uptake of eHealth in developing countries, particularly for the benefit of women’s and children’s health, indicated that telemedicine and teleconsultation were the most frequently adopted services, with of 47% of the 64 countries implementing them. It’s also been used in HIV-related programmes.

During the Covid-19 pandemic, telemedicine experienced a global boost as it allowed for patients to be managed outside hospital facilities. It also allowed for ill patients to be triaged remotely, enabling hospitals to prioritise resources and reserve the capacity in hospital for high-risk patients.

Post-pandemic, the telemedicine industry has been valued at a quarter trillion dollars. The reproductive and maternal care sector reported similar developments during the pandemic with evidence showing that telemedecine was applied “on a wide scale for different aspects of maternal and newborn healthcare”. However there were also issues, ranging from lack of clear guidelines, lack of training for providers, and issues of connectivity, to costs for patients, the remote care being covered by insurance.

However it doesn’t look like telemedicine is going anywhere.

In addition to mitigating the risk of contagion, a key appeal factor of telemedicine is its apparent cost-effectiveness for healthcare providers and patients alike. It allows patients across the board to save time and money, and enables the infirm and the elderly to access care without physical effort. It also allows those in low-resource settings such as rural areas and remote sites to access care. Further, it enables healthcare providers to save costs by shortening the average length of appointments and, in the case of AI-led applications, telemedicine enables providers to save on staff time and costs.

Below we describe a few of the applications made possible by telemedicine in the health sector, and in particular reproductive and maternal healthcare.

 

Examples of telemedicine uses

Real-time, video-based health consultations and advice

Perhaps the best-known example of telemedicine is the use of videocall consultations.

The provision of real-time, video-based health consultations has been integrated into the reproductive and maternal care sector. This has led to the development of a “telemedicine network, linking major maternity hospitals to provincial and county hospitals for teleconsultation, teleeducation and telementoring for surgery.“.

During the Covid-19 pandemic, services enabling 1-1 smartphone-based videocalls between health professionals and patients flourished across the public and private healthcare sector. Videocalls enable healthcare professionals to see patients remotely, while preserving the benefits of visual assessment. As the United Kingdom’s National Health Service quick guide for video consultations states, “visual assessment adds key clinical data”.

The Kenyan Ministry of Health took similar measures to adapt services. They encouraged telemedicine for antenatal care. Birth registrations were to be processed via SMS as part of the new process. Similar initiatives were also launched in El Salvador as well as many other countries including Albania, Belgium, Azerbaijan, Finland and Spain.

There have been some instances which go full circle from consultation to treatment. These processes include the delivery and processing of the care itself with prescriptions being sent to the patient. This includes obtaining contraceptives, which occurred increasingly with Covid-19. In some instances, access to remote safe abortion care was provided by non-for-profit organisations. Some countries including France used telemedicine to deliver all associated medical appointments.

 

Health monitoring apps/software

Unlike video-based consultations, some remote health monitoring initiatives rely on information exchange over time with a view to facilitating diagnosis and treatment. The data collected by these applications varies, and ranges from concrete data points (e.g. heart rate, glucose, blood oxygen levels) to video footage.

Such systems have been developed to cater for a range of health conditions, including diabetes during pregnancy, chronic obstructive pulmonary disease, and more recently Covid-19 infections.

For reproductive and maternal care, remote monitoring devices for various areas of prenatal care have been reported including: (1) cardiotocography; (2) blood glucose levels; (3) blood pressure; and (4) prenatal ultrasounds.

Regardless of the condition they cater for, these systems have common features:

  • health data is collected by patient/user through device (e.g. pulse oximeter, glucometer, etc)
  • health data is input onto the relevant app/platform (through device-app pairing or through direct patient/user input)
  • health data is shared with a designated clinical team in real time, and monitored

There have also been programmes put in place to enable community-based antenatal care provided by midwives in remote locations. These programmes aim to connect, share information by collecting data from patients about weight and health, and then share that data through an app with third-party.

The Mobile Obstetrics Monitoring trialled in Indonesia is an example of such a mechanism. It has had positive results on the efficacy to detect very high-risk and high-risk pregnancies.

Many of these mechanisms in the reproductive and maternal care sector are still nascent and many of the studies completed on evaluating and assessing them have been of pilot projects and/or within limited clinical trials. It is recognised that further studies are needed before generalising the benefits and uptake of such mechanism on a large scale.

In other health sectors, more advanced systems have been deployed. For example apps that can build on these communication features by applying machine learning capabilities. The Propeller app, aimed at people suffering from asthma or chronic obstructive pulmonary disease, reportedly “learns about your flare-ups and medication use and can help you become an expert at managing your symptoms and identifying your triggers”. Some data from the app can be accessed by partner healthcare organisations, who “are alerted when a patient transitions to a poorly controlled status” and similarly “receive reports that include patients’ medication adherence, trigger and symptom trends […]”.

Other innovative initiatives have seen the deployment of video-based observation in the monitoring of health conditions, known also as video-observed therapy or ‘VOT’. VOT has been deployed to support patients with active tuberculosis by way of daily remote observation using a custom smartphone app that allows patients to film themselves taking medications on a computer or mobile device. These images are then transmitted to a remote observer via the internet. A 2019 study published in the Lancet found that VOT was a more effective approach to observation of tuberculosis treatment than directly observed therapy, i.e. observation done in person.

 

Sensor-based systems
Some telemedicine systems take a significantly more comprehensive approach: in addition to concrete health measurements, they rely on data collection systems to assess a person’s environment. These systems have proliferated in the field of geriatric medicine, which specialises in the care of elderly people.

Wireless sensors monitoring activity inside the home are a key example. By detecting movement and door activity, they are capable of providing a detailed insight into an occupant’s day-to-day activities in the home on a 24/7 basis. One provider, for example, offers the option to monitor movement, bathroom visits, visitors, and sleep based on data collected by the sensors. The data is then uploaded to a portal that can be consulted by authorised individuals. While these systems are often used by concerned family members, they can also be used by healthcare providers. For example, Canary Care offers a range of services to UK’s National Health Service institutions, ranging from initial assessments to reablement after hospitalisation.

For years there have been discussions of using tools such as wearable sensors in the context of antenatal care by monitoring lifestyle behaviours and other risk factors associated to the health of a person such as their weight, blood pressure, stress, etc., maternal adaptations during pregnancy and linking these to pregnancy complications with the aim of rectifying them once they’ve been identified to lead to healthier lifestyle behaviours and minimise risk of pregnancy complications.

And in recent years this continued to attract much attention with advancements in technology, and also expansion of the data collected to not only refer to specific health conditions or within a short period of time but to integrate comprehensively one’s whole environment in realtime 24/7 to enable continuous and long-term monitoring. New tools are being developed to tackle the realities of low-resource settings where advanced tools are not accessible to enable “comprehensive assessment of both the mother and fetus with compatibility across a wide range of mobile devices” “to obtain physiologic information” in a way that is efficient and cost-effective.

 

Areas of concern

Exclusion

One recurring area of concern with the deployment of digital solutions and tools like telemedecine is the digital divide and the implications this has to reach significant groups due to their limited access to digital infrastructure, both software (the digital platform) or hardware (mobile phones) to use these tools.

In studies conducted, the “availability of technology and connectivity seem to pose a serious bottleneck”. These concerns were also noted in terms of reliance on technology and connectivity for access, and the lack of it, resulted in “increasing maternal and newborn health disparities and inequities”.

As with any device-based application, telemedicine can only go as far as the technology available to the patient. At a minimum, telemedicine initiatives require the patient to have a working internet connection, a data plan, or sufficient local bandwidth; and video-based technologies require patients to have a smartphone.

In low-income settings, the absence of one or more of these resources can be a significant obstacle in the provision of healthcare, a Kenyan study found.

 

Security

Any telehealth application processing health data must appropriately safeguard against the risk of unlawful disclosure. Time and again, data leaks concerning medical information have made headlines. Even if in the reproductive and maternal care sector few have been reported and documented, multiple examples exist across the healthcare sector and beyond.

In 2020, Vastaamo – a Finland-based healthcare provider which ran the largest network of private mental-health providers in Finland – suffered a catastrophic data breach exposed its patient database, which included personal details as well as therapy notes, to the entire internet. Hackers then blackmailed former and current patients – at least 25,000 of them – to pay a ransom sum in exchange for the promise of confidentiality of their leaked data.

The challenge of telehealth applications is also the driving purpose behind their existence: to collect health data from individuals. Some telehealth applications collect and store vastly more data than electronic databases managed by healthcare providers would typically contain. This makes the risk of harm attaching to unlawful disclosures much larger.

For example, in 2020, Babylon Health suffered a data breach that mistakenly sent videos of patients’ private consultations with doctors to other patients. The breach laid bare the risk inherent to video -based – or even audio-based – applications. And in many cases, that risk echoes over time, as telehealth appointment apps often keep a record of consultations for a significant amount of time. In Babylon Health’s case, at the time of writing, the period of retention of video or audio consultations is 10 years.



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