Understanding the potential of digital health data

An interview with Ernesto Ramirez of Quantified Self

Ernesto Ramirez is the Program Director for Quantified Self Labs (QS), the organisation that supports an international collaboration of users and makers of self-tracking tools aimed at helping people get meaning out of their personal data. We talked to Ernesto about what Quantified Self can offer the digital health community, his own work and his vision of the future of digital health.

Could you tell us a little about how Quantified Self started?

Quantified Self started as a project between Kevin Kelley, founding executive editor of Wired magazine and Gary Wolf, writer and contributing editor at the magazine. They’d worked together for many years and knew the landscape of computing and techno culture. Kevin and Gary were obviously always trying to figure out what would happen next and they saw that computing was getting closer to the human body.

Today, Quantified Self Labs is headquartered in Berkeley, California and is focused on discovering ways in which data collected by people on their own can help us understand the world. As wearable technology explodes, the commercial aspect of what Quantified Self does is growing more and more. There’s no question to Quantified Self that personal data has the potential to change the world.

At the same time, Quantified Self engages with concerns about the danger of data control and what data access really means. We feel we can combat the dystopian outlook by supporting the notion of individuals controlling their own data, not corporations or governments.

Could you tell us a little bit about your background and how you got involved with Quantified Self?

I originally wanted to be a sports psychologist. Working as a research assistant on physical activity projects, specifically on Native American reservations, I realised it was possible to affect the lives of more than one person at a time. Now, I’m a PhD candidate in the joint doctoral program in public health at University of California at San Diego and do research at the Center for Wireless and Population Health. I started with Quantified Self in 2010 and am now a program director.

I totally believe in the idea that using technology to understand ourselves – not just people with chronic diseases – can really affect our lives in a good way.

From Quantified Self I’ve learned about the value of experimenting on myself. I’ve been wearing a Fitbit for a little over 4 years and I’ve logged around 14.7 million steps. This has had a significant effect on my behavior. Being confronted with my own physical data makes me continuously aware of what I need to do to live the life I want to lead. To be happy, healthy, have good social connections and so on.

What does that mean and what are the threats and possibilities within data sharing/data ownership? Should we share?

First of all, I’d like to clear something up. No one can copyright or own data because a piece of biological data is a fact. It’s really about who controls access to data. The implications of access and control are what interest me. So, it’s about what we actually consent to when we give people access to our data.

But, having said that, I’m on the side of all the potential that’s there. I think this is a great opportunity for people to use their own data positively. I also think it’s an excellent opportunity for individuals within corporations and government organisations to do good work, to be really transparent and ethical.

So, yes, I think we should share but we have a right to know what happens after we do so.

How can business and organisations be more transparent and ethical?

For a start, business and government can learn a lot about to handle private information ethically from Quantified Self and the research community. Researchers like me have to do a research ethics course before we start our work. Talk to us.

What is your take on Apple’s ResearchKit?

To be honest, I cried when I saw the video and the guy said it’s time to put participants at the centre of research. For me, it’s about really doing this. If people are able to integrate research projects into their daily lives, painlessly and unobtrusively and the data collected by ResearchKit is made available in an open source way, it really could revolutionise the way we understand human health.

Overall, I think we’re living in really exciting times. Pieces of the puzzle are fitting together.

What about the future?

First of all, it’s going to be OK. There’s no need to panic.

I had the privilege of talking with John Wilbanks of Sage and he made an excellent point. He said that people think of technology as autonomous but they forget that at its core level technology is code written by people with opinions that they express in the things they build. If we make sure that these opinions are good, ethical and positive, we can shape things for the better. And I think we’re still looking at the tip of the iceberg as far as data are concerned. Perhaps the most fascinating thing for me is imagining what would happen if all of the companies that have a piece of your data in a database somewhere made it available to you in a way that you could understand easily. What could I learn about myself if asked all the data collectors – telcos, for instance – what they know about me? What if we actually gave people credit and let them innovate businesses and systems using data? What if we really did set data free?

Thanks, Ernesto.

 

Article by Elizabeth Nelson & David Holzer


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