Open Health Data: An International Snapshot

The 2009 Digital Britain Report described data as ‘an innovation currency’ and ‘the lifeblood of the knowledge economy.’  We are now in 2013 and while there is tremendous buzz around open data in general, open health data is definitely lagging behind.

I have been a great proponent of the movement for a number of years after being inspired by Todd Park at a Health 2.0 NYC Chapter event. But it really clicked with me when I saw three young entrepreneurs mashup various environmental and health data, create an MVP app in 6 hours and win two prizes at an open data hackathon. These three students are on their way to starting a company and making a difference in this world while helping healthcare consumers make better decisions in their everyday lives. This is the power of open health data! We, the citizens, ultimately own the data, not our governments and while there is certainly a need to preserve our privacy, there is a lot of “innovation currency” locked up in vaults, desperately waiting to be unleashed.

Above you will find a brief report (50 slides, but don’t get scared!) that Katarzyna Rabczuk and I put together.  It showcases how nascent this movement really is, while showing samples of social and economic impacts of these initiatives across the US, UK and a select few Western European countries picked at random.

The United States is undoubtedly leading the way with HealthData.gov and almost 400 valuable datasets published, ranging from Medicare data to epidemiology. Health Datapallooza is already turning 4 with the next event taking place in June of this year.

The United Kingdom is right behind (or ahead, depending which side of the pond you are on) with Tim Kelsey pushing forward and “unleashing the power of the people to save the NHS from a crisis”. The next NHS Hack day will take place on January 26th-27th in Oxford and some of the recent initiatives to open up prescription data generated a tremendous amount of buzz after a team that included two startups, Mastodon C & Open Healthcare UK as well as Ben Goldacre, published a report that showed how to save the NHS ~ £200M – this news reached even The Economist.

Unfortunately, the rest is very much of a long tail story and as you will see, the economic and social impacts dwindle as we travel outside the US & UK. In some cases, like Germany, we really needed to stretch to find an example of water quality (well, it could impact health) of swimming places around Berlin!

While we have spent the last few months compiling the data, this overview is not meant to be a comprehensive report on all the global initiatives, funding models, health outcomes or economic activity surrounding this movement. We strongly believe that open health data is one of the major keys to bridging the gap between digital citizens and governments and a great way to engage with grassroot communities of evangelists, private enterprises and not-for-profit organizations. We would love your feedback, additional examples and honest and open (pun intended) conversation on the newly created Google+ Community and LinkedIN group.

Eugene Borukhovich is CEO of Initium Consulting Group in Amsterdam. He was the International CIO at on of the big 3 PBMs, and co-founder of HealthWorldWeb (sold to a publicly traded company in 2010. He’s also the founder of both the Health 2.0 NYC & Health 2.0 Amsterdam chapters.