Innovators in Health Data: Health Data’s Adolescence

INTRODUCTION
by Abdul Shaikh & Gus Mutscher

 

It is our great pleasure to introduce Susannah Fox, Associate Director at the Pew Research Center’s Internet and American Life Project, as our first guest in the Innovators in Health Data series.  A self-professed ‘internet geologist and healthcare gadfly,’ Susannah brings a broad and infectiously engaging perspective grounded in data to address emerging social and health-related issues on the societal impact of new technologies.

 

We asked Susannah to share her thinking on where the open data community should be looking for inspiration and guidance to advance meaningful innovation with health data.  Some of our own inspiration has come from visionaries such as Hans Rosling who made global population health data come to life in 2006, leading to one of the first federal efforts to visualize integrated health behavior, policy, and demographic data: PopSciGrid Community Health Data Portal.

 

As part of her commentary, Susannah reminds us that the groundwork laid over the last 25 years in the evolution of the Internet has been riddled with important trial and error alongside the innovation and consumer adoption lifecycle.  And, while the open data movement is still in its ‘adolescence’, today’s multi-disciplinary innovators are exploring how to leverage powerful and rapidly evolving digital platforms capable of accelerating change and expanding the boundaries of population health and medicine.  As consumers of these health data services and products – patients and caregivers, researchers, government, and industry – it is both exciting and heartening to know that visionaries and advocates such as Hans and Susannah are here to help us embrace the successes and failures in the emerging generation of health data innovation.

HEALTH DATA’S ADOLESCENCE
By Susannah Fox

This year marks the 25^th anniversary of Sir Tim Berners-Lee’s proposal to create what we now call the Web, the visual, hypertext organizing system which overlays the internet. The pace of internet adoption gathered speed once people could more intuitively point, click, and follow a train of thought without having to type in a chain of commands. I see a clear parallel in the adoption of tools related to health data, most of which are still inelegant, but show growing promise as they become more visual, collaborative, and intuitive.

Remember: In 1990, only 42% of U.S. adults used a computer, even occasionally, compared with 81% who do so now. In 1995, two years after the release of Mosaic, the first browser, the Pew Research Center found that 14% of U.S. adults said they used the internet, compared with 87% today. ¹

Open health data is no longer at the toddler stage, when the need for public data sets or related tools had to be explained. It is also not yet mature, nor considered a given in society, like the Web is today. Health data is instead in its adolescence, like the Web was around 1996 – just starting to become beautiful and truly useful to the general public, pushed forward by a growing group of innovators, with a mix of corporate, government, and non-profit support.

We should look at these developments with kind and hopeful eyes. What is the blink element of today that we will laugh at later? What is the Mosaic, the program that allows regular folks to jump in and start clicking? What is the AskJeeves and what is the Google of health data? What is the Compuserve and what is the AOL? What is the Blackberry and what is the iPhone?

My advice is to learn from the past. Follow the artists, the geeks, and those who play with the tools and data sets at their disposal.

Look for beauty, such as FlowingData’s depiction of where people run in cities, based on FitBit data:

^{courtesy of FlowingData}

Look for usefulness, such as ProPublica’s nursing home look-up tool, which empowers consumers to access data from the U.S. Centers for Medicare and Medicaid Services:

^{courtesy of ProPublica}

Find the people who “roll their own” solutions, like Katie McCurdy, who created a tool to track and visualize her own health data so that she and her clinicians could better understand patterns:

^{courtesy of Katie McCurdy}

But also be sure to follow those who make it easy for crowds to join in, like the Blue Button movement, which calls for health record accessibility.

^{courtesy of HealthIT.gov}

Let’s celebrate the experiments and the triumphs of this adolescent stage of health data. Tell us what you’re seeing out there!

^{1. Pew Research Center, February 2014, “The Web at 25.” Available at: http://www.pewinternet.org/2014/02/25/the-web-at-25-in-the-u-s} ↩