A challenging perspective on digital health

An interview with Josh Berson

Josh Berson describes himself as an anthropologist and design researcher. We spoke to Josh about the implications of digital health for people like him and what the benefits of working with researchers are for business and public organisations.


So, Josh, what do you actually do?

I’m actually still figuring this out myself but I’m exploring how personal data can help us understand individuals and our relationship with the world we live in.

In terms of research, I’m keen to question and redefine the terms we use to, if you like, “unwork” them. For example, researchers talk about “participants” in research but that doesn’t actually make research participatory. I’m part of a group called Hubbub and we’re making the participants’ understanding of the data part of the research itself.

Basically, we’re questioning the assumptions behind research.

How can that approach help business and government organisations involved in digital health?

For a start, it will make the research on which people involved in digital health make their decisions far more accurate and relevant. Which, of course, means that any investment in research, both time and money, will be much better spent.

Here’s an example. If I’m talking to a major provider of diabetes treatments about plans to grow market share in Sub-Saharan Africa, a major growth area for diabetes, it would make sense to concentrate on helping people avoid becoming diabetic. If a company invests in supporting preventive measures it obviously adds to their credibility.

At the same time, seeing participants in research as people is all part of changing the way both the consumers of wearable technology and hospital patients are viewed by business and government. It puts people at the center of everything.

And, as we know, technology coupled with the idea that individuals are somehow solely responsible for everything that happens to them is quite capable of feeding the sense of isolation that already exists for many people.

Personally, I would love to see all this new technology used to make better decisions on the community level. What if we could use the technology to encourage a greater sense of participation in a community? And to drive home the fact that unequal life chances determine so much.

What are your feelings about Big Data and the builders of apps designed to collect data?

Some of the uses of Big Data are obviously worrying. For example, in the U.S., much more so than Europe, consumer credit ratings have become a remarkably pervasive tool for stratifying people in terms of what kind of insurance risk they are. This kind of data is going to become part of our health consumer profile. What kind of health insurance premium you get will be dependent on whether you’re prepared to wear a device to share data with your provider, which will enable them to give you health tips.

But, being optimistic, it’s not all about money and control.

There is a way we can do something we can live with. To be honest, people operating in this space should be talking to someone like me who is keen to see the bigger picture socially and find ways to help people cope.

What are your feelings about Apple’s ResearchKit?

My gut response is that I think they’re probably going to provide a very good experience for what most people want. The tools will be beautifully designed. They’re going to nail it that way. Brand goodwill will migrate over to this space and I wouldn’t be surprised if they become a dominant player. My concern is that we don’t know how Apple are defining their algorithms, how the products were developed, what kind of assumptions were and are made.

Given what I said about the dangers of Big Data, I would like to see greater transparency from Apple.

Why is your book COMPUTABLE BODIES: INSTRUMENTED LIFE AND THE HUMAN SOMATIC NICHE relevant for what’s happening now?

There’s no question that we’re now living in a web of connected devices and this affects how we see ourselves as bodies. At the same time, our built environment – from the airport to the gym – is changing our bodies at the anatomic level, which affects how we are as beings. Lastly, because our movement or health data is being used by large organizations with the power to shape our lives, I want us to start thinking about the kinds of choices we have to make about how arrange our social world and the legal conditions in which technology emerges. Technology is often shaped by politics, for instance.

And does that make you an optimist?

Am I optimistic? It depends on the day. I wouldn’t be doing the work if I didn’t think there wasn’t a possibility to create a fairer world. I do believe resistance is not futile. I feel that a different kind of world is possible.

I also believe that most people in business and government are personally driven to do decent things.

Thanks Josh.

Find out more about Josh and his work at www.joshberson.net and if you’d like to know more about what Hubbub is doing, go to www.hubbubgroup.org.

Josh’s book COMPUTABLE BODIES: INSTRUMENTED LIFE AND THE HUMAN SOMATIC NICHE (London: Bloomsbury, 2015) will be published in September.


Article by Elizabeth Nelson & David Holzer


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