Digitising public health: what are the ethical implications and responsibilities?

18 Apr 2017

fitbit

From tracking kilojoules to mapping exercise plans and monitoring mood fluctuations, mobile apps and fitness trackers allow users to access – and share – a wealth of data to help them set their fitness goals, track their progress and even compare their results with friends.

But what are the implications of giving away all this valuable data? And how can health workers best engage consumers and make use of this wealth of information? A public forum at the University of New South Wales (UNSW) on 19 April, The Will to App: digitising public health, will explore issues in the development and content design of digital public health and discuss some of the challenges that eHealth presents.

The panel of academics and industry representatives, all of whom have worked with health apps, will explore questions relating to practical and ethical issues in the digitisation of public health, including:

• What are some of the key issues for the development and rollout of apps in terms of engagement, publicisation, ethics, safety, resourcing, funding and regulation in different public health settings?

• Have we reached market saturation or will demand for these tools continue?

• Is the balance right between these and other approaches to public health promotion and intervention?

• What are some of the challenges in the publicisation, promotion and reach of apps?

The panel participants are: Daniel Hamilton, from Family Planning NSW; Deborah Lupton, University of Canberra; Tama Leaver, Curtin University; Anthony McCosker, Swinburne University of Technology; Frances Shaw, Black Dog Institute; Jennifer Nicholas, Black Dog Institute; and Matthew Vaughn, ACON.

The event is supported by the Black Dog Institute, UNSW School of the Arts and Media and the UNSW Digital Cultures Node.

Dr Frances Shaw, a postdoctoral researcher at the Black Dog Institute, says there is a lot of potential for apps to do good, but there are challenges.

“Public health organisations have an ongoing responsibility for apps they have developed, and maintaining relationships with users. Sometimes this can take up a lot of resources. We need to make sure the balance is right,” Dr Shaw says.

The potential of the technology is developing faster than the ethics and governance around it.

Commercial apps can collect a lot of data about individuals, and users might not always be aware of how this information is used.

"Not all app developers will use this data irresponsibly. But that relies on individuals and organisations thinking about the ethics, and there may also be a need for regulation and curation of existing apps," Dr Shaw says. "The potential of the technology is developing faster than the ethics and governance around it."

Associate Professor Kath Albury, who leads the Digital Cultures Node of the UNSW Media Research Network, offers the example of health insurers and employers giving away fitness trackers as a tool for people to improve their health and wellbeing.

"What is implied when we ask people to use a mobile device or computer software to discuss their health? Are you agreeing for your employer to keep that information?" Dr Albury asks. "What if you suffer and injury at work and make a claim for compensation but the employer has the data from your FitBit and it shows you haven't been doing your exercises?"

Some of the biggest growth has been in mental health apps, many of them developed or recommended by public health services and support groups. In early April, for example, mental health organisation Sane Australia announced that it was about to begin testing an app for people with bipolar disorder that collects data on an individual's interaction with their mobile device to predict the onset of mania.

Dr Shaw says we need to consider the ethical implications of predictive technologies, while also considering their potential to aid healthcare. “These technologies may disclose people’s mental health status without their consent or even awareness. For that reason, it’s really important to make careful decisions about who has access to that information, and who can act on it.”

The public forum is on 19 April, 4-5.30pm, UNSW Law Building, Room G02, High St, Kensington. The event is free but registration is essential, here.