When are we empowering users, and when are we just being lazy?

Digital health services and wearable technologies are meant to empower users to change behaviours and become better informed, more engaged patients. However, to what extent has the rhetoric of empowerment in digital healthcare been diluted to the point that when we speak of “empowering users”, what we really mean is “let’s get the patient to do our job for us”? Far from an academic exercise, understanding empowerment is crucial to developing a product that resonates with consumers and appeals to decision makers in macro health systems. We must ask ourselves, do patients really want to be empowered?

Devaluing empowerment

I saw a quote recently on the wall of a gym, “it always seems impossible until it’s done”. This quote is widely attributed to Nelson Mandela, and presumedly it was said in the context of the anti-apartheid movement.

Seeing this quote — painted in elegant monochromatic cursive on the wall of a gym — captured perfectly the challenge facing people interested in using digital technology to empower people. It was clear that the gym was hijacking the language of empowerment and activism (in this case, against a horribly oppressive system of racial, political and economic segregation) and evoking that rhetoric to push customers to go ‘that extra mile’ on their stairmaster.

People have jumped on the ‘empowerment’ bandwagon, without actually thinking through what empowerment is all about. The result of this is often tokenistic empowerment. We have professionalised, sloganised and devalued the language of empowerment; what was once a battle-cry for the oppressed is now a tool to sell us things, like gym memberships.

Building for everyone

I’m an expert in what those in the design community call “extreme users”. This refers to people who fall outside the mainstream distribution on a given variable. I worked in Canada evaluating a public health initiative that offered safer crack use kits and syringe exchange, and in Malawi looking at HIV and gender initiatives within cooperative banks. These experiences shaped my approach to digital healthcare. Like IDEO, I observed that without finding solutions for the extreme users, you won’t find a solution for everyone.

In health, a small handful of frequent users often take up a disproportionately high amount of resource. It is crucial in healthcare to build for people with multiple long-term conditions, and those with complex health needs; in other words, the people who need the most support. This poses design and accessibility challenges because those who would benefit the most from digital health innovations are often the very same people who will struggle to use it.

Power & the digital divide

Extremely marginalised groups are not disempowered by choice, but rather, through a broad range of socioeconomic and structural factors that systematically deprive the individual from gaining a sense of control over their lives. As such, when speaking of empowerment, to suggest that disenfranchised groups can become “empowered” without challenging the wider contexts of their lives can result in a culture of victim blaming.

The World Bank talks about empowerment in terms of two things. Firstly, they talk about enhancing an individual’s capacity to make choices. They then talk about leveraging those choices into desired actions or outcomes. However, power isn’t neutral and “dominant groups seldom voluntarily relinquish power without vociferous demands from the excluded” (Campbell & Cornish, 2009). When we think about things like wearable devices that enable people to actualise the “quantified-self”, we are usually realising just the ability of someone to self-monitor. In other words, we can make it possible for people to take better care of themselves by developing new technologies that support self-care. However, these innovations will only help those who are genuinely interested in taking greater control of their health. This type of self-determination with regard to health is a necessary pre-condition for successful adoption of digital health solutions. Unfortunately, all too often, in the digital health industry, we get lazy and speak as though technology itself can create that individual level of empowerment. This fails to consider the inherent power dynamics between providers and users of health services, and the role this dynamic plays in facilitating agency among the users of health services.

Why are we excited about empowerment?

Empowered people cost health systems less money and have better health outcomes. This is because people who are more empowered, or activated, tend to be more involved in their health. They are more likely to engage in preventative health behaviours, and generally do the things that help them stay well. But it also goes a bit deeper than that.

Allow me to attempt to briefly summarise decades of research into a couple of sentences. Empowerment and health are positively correlated. People involved in social movements, such as the women’s rights movements, or the LGBT movements didn’t just change society for the better. On an individual level, many of those activists had better health outcomes. In basic terms, the same characteristics you need to champion a cause (self-esteem, self-determination, the ability to mobilise) are complementary characteristics to the behaviours needed for good health (ability to self-manage, confidence to engage with health information). If we can “empower” people out of poverty, surely (the logic goes) we can empower them into good health.

Empowerment: is there an app for that?

“We’re stuck with technology when what we really want is just stuff that works”, and this situation leads us to interesting but short-sighted digital health initiatives that don’t reflect the complexity of health systems, or the flawed humans who use them. By conflating consumer demand with “vociferous demand”, we started commodifying and consumerising citizen led pursuits. Namely, we started trying to empower people to our own objectives. The trouble is, empowerment is a pandora’s box — once people have power, by its definition, others cannot dictate what they do with it. We cannot empower people to our own objectives; at its best, that approach is benevolent social marketing, while at its worst, coercive and exploitative.

While it is easy to become disillusioned with erosion of the empowerment agenda’s activist roots, user-centred design, by its very nature, allows for a fundamental change in power dynamics between service users and service providers. There are outstanding individuals and groups like mhabitat and 11health who are demonstrating the commercial potential and long-term viability of an authentically user-centred approach. There is incredible potential for things like co-production to bring the makers and users of services together — on an equal footing — to design innovative solutions to complex problems. The digital healthcare challenge will be addressed by those who reduce system complexity by understanding the real drivers and motivations of people, and building solutions that respond to those needs in practical ways.