Digital public health doesn’t have to compromise on trust

8 May 2020

Image: Dr Marguerite Barry

UCD’s Dr Marguerite Barry explains why human-centred design is essential for effective and trustworthy digital public health strategies, such as contact tracing.

We are moving into a new phase of communication around Covid-19 which will focus on more long-term supports for living with the virus. These are likely to involve a mix of digital technologies used in tracking, tracing and sharing personal data to maintain public health.

While the first phase of communication has focused on building public support for health and public policy – a crucial factor in navigating our way through pandemic times – the next phase must build on this support by ensuring that these technologies place people at the centre of their design.

Extensive work has been carried out for over two decades in exploring the uses of digital applications to benefit personal and public health. Mobile health (m-health) applications hold great promise for improving physical and mental wellbeing, especially because they allow us to easily self-report on symptoms and experiences. The mix of personal information and public health data is crucial and has had very positive results from screening and diagnosis through to treatment and protection of vulnerable groups.

The design of m-health involves software development but also expertise from human-computer interaction, psychology and ethics. It is carried out and tested both under clinical conditions and in the wild, where the design process is inclusive from the outset, usually focused on the people who are likely to use, be affected by or benefit from these applications.

Trust and engagement

Human-centred design reveals important information about trust, interaction and engagement. For example, some m-health apps can identify early symptoms of disease or mental health conditions. But user studies show they must be sensitive in how this information is conveyed both to users and health services.

Other apps are designed to help people manage their symptoms and conditions, empowering people with a sense of control over their wellbeing. Here, the design must take care not to overwhelm the individual with information or create reliance on the technology, while continuing to support human relationships in healthcare.

Some m-health studies have addressed the stigma that persists around declaring certain kinds of health information – particularly mental health and infectious disease. Here, digital technologies can offer a more comfortable, private and even anonymous mode of reporting.

‘Design must ensure self-reporting can be done accessibly, voluntarily, easily, ethically and with a sense of contributing to public wellbeing’

However, design studies have also revealed that people may have much less power over the use of their own devices and health information than we think. Women in abusive relationships or living in communities where they have limited financial and communication autonomy are particularly vulnerable to the increase in socio-technical shaping of healthcare.

Thousands of tracking apps have been designed to monitor exercise, sleep, diet and other health behaviours and many are gathering digital dust on our devices. The successful ones are those that keep people engaged by ensuring their design supports good habits, healthy goals and human relationships, while capitalising on social motivations to keep using the application.

So, human-centred design is not just ethical but is also basic good practice, because it produces better applications that people are more likely to continue to use – a crucial element in the effectiveness of digital public health.

Contact tracing with a human touch

Any digital health application approved by a public health service as part of pandemic planning needs a high level of take-up in the community to succeed. Its design will not just have an impact on its own use, but on the trust in and uptake of public m-health applications in general.

Digital track and trace applications can only work if they are designed to support and not to replace human interaction. They need to gently encourage us to share personal and health information for the public good and to build on the important social and empathetic work done by human contact tracers and health services generally.

Contact tracing is a specialised form of communication which requires a personal touch. As those who have experienced it will know, it is carried out in a discreet and compassionate way. It is a strange experience when the call comes because there is a surprising amount of detail and nuance involved in our human interactions – our context, positioning, touch and actions while interacting, and so on. Digital applications can only direct us towards and complement these human descriptions.

A digital contact-tracing app will at most be able to passively detect approximate location, distance between contacts and duration of the encounter, and only among those who have installed the app and are able to and continue to use it. Many false positives are to be expected.

But the most important information – central to the functioning of these apps – will come from people who actively self-report on a positive test result. Design must ensure this can be done accessibly, voluntarily, easily, ethically and with a sense of contributing to public wellbeing.

Persuading or policing?

We have seen how political leaders, health experts and communication specialists have all played a role in shaping opinion and guiding behaviour towards ourselves and each other. Acting decisively and following scientific advice in policy are important, but clear communication skills have been essential.

It is not a coincidence that the countries with more positive outcomes in containing the spread seem to be those whose health, political and media representatives have been unequivocal in their messages. They are clear about what is required to confront the pandemic while also respectful of the value of public debate and the capacity of the public to absorb complex information. They have understood the vital role of communication in supporting public health.

Meanwhile, inconsistent communication undermines trust in science and public health, and is visible where there is a struggle to contain both the virus and the public’s opinion on efforts to control it. This is exacerbated by politicised media systems and weak public service broadcasting, which can further polarise opinion on continuing waves of infection and pressurised health services, creating ripe conditions for a more secretive surveillance approach to technology use. This is also where digital technologies are deployed without building trust and with no care for the human in design. Here, digital communication is frequently framed as a trade-off: society will open up in return for public acceptance of digital tracking.

Successful communication persuades and does not police people into action. First, we need a clear motivation to act. Fortunately, much of this is provided by the nature of the virus itself. Fear, personal knowledge of its effects on the body and visible evidence of its impact on healthcare services is enough to prompt us into action. Public communication of these elements and a shared sense of purpose has guided our efforts so far.

‘It is not a question of either good public health or privacy. Human-centred design can give us both’

Digital applications – and those who design and deploy them – must support our positive motivations to contribute health data for the public good. This will be achieved by being transparent and communicating the limits, purposes and goals of digital applications clearly.

Next, in order for public communication to be effective, the public needs to be able to process the important information. This is achieved through clarity, quality, consistency and repetition. We have seen this in daily formal updates on numbers, familiar visualisations of the curve, inclusive broadcasts using sign language, and uniform yellow branding and signage – all of which have affected our thinking.

Digital applications must similarly communicate a consistent message that is accessible and usable for everyone, and clear on what information is important.

Ultimately, the aim is to change attitudes and build trust in new forms of public health information practice. We are moving towards a possibly lasting societal change in how we deliver and monitor public health, which includes how we design technologies to support wellbeing. A generation of younger children will only know this world and how we responded to the challenges presented to us. Hopefully they will learn that we made a decision to design our technologies for the humans who would use, benefit from and flourish through them. This does not require any surveillance, profiling or commercial uses of our data.

Communication is vital for public health. For example, we can live with physical distancing, but we live for a social life. We do not like to be described as members of a her’ and the word ‘tracking’ implies being followed anonymously – but ‘tracing’ and contact ‘communication’ might be something that we want our technologies to do for us.

Ultimately, we want to be able to share only the information that is necessary to keep everyone safe, but no more than that. It is not a question of either good public health or privacy – this is a false choice. Human-centred design can give us both and, as a society, we must demand it.

By Dr Marguerite Barry

Dr Marguerite Barry is an assistant professor at the School of Information & Communication Studies in University College Dublin. She is a signatory of the Irish Council for Civil Liberties’ call to the HSE and the Department of Health regarding concerns about contact-tracing apps.