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.
Below, 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.
Healthcare is complex, intertwined, and touches every single individual on this planet. The average per capita spent on healthcare costs has been tremendously increasing over the past few years. Governments seem to focus on increasing premiums, changing tax rates and augmenting efficiency gains. A great article by Clay Christensen briefly illustrates that the focus for dormant capital has shifted to efficiency gains instead of innovation. And as we all know… innovation is what this world needs.
During November’s Health 2.0 conference in Berlin, Tim Kelsey -Patients and Information Director at the NHS- stressed the importance of open data. Tim wears many hats, including a role as a CIO, CTO and pseudo-CMO. No matter what the title states, his speech was inspiring and while he made some bold statements about giving all patients in UK their own health record by 2015, the one thing that resonated was his passion and dedication to open health data. As he puts it: “open data will unleash the power of people and save the NHS from a crisis”.
There are numerous reforms being pushed across the world. Whether a country has completely socialized healthcare system, a completely privatized system or anything in between, the issues are all the same: an utter lack of transparency.
Cost transparency is being viewed as a no brainer in many industries, except in healthcare. Do you know the true costs for procedures, tests and treatments whether you are in the ER, visiting your GP or heading over to see your dentist? Let’s not even talk about quality metrics that are associated with any of the above visits. What’s the discharge rate for a particular hospital and especially: what are re-admission rates and the root causes for these?
What is the solution?
I would argue that open health data plays a big part in the solution.
All of the above points are difficult to achieve. It takes time and perseverance, but I will voice some challenges for the future of open health data and also provide suggestions on how to mitigate these issues:
None of us truly can predict where open health data will be in the next decade, but I strongly believe that the “Golden Age” of healthcare is rapidly emerging and open health data may soon become a common reality.
“What marked the Golden Age was a sense of wonder and curiosity” – said a well-known Dutch historian Eric Jorink.
I would add that the times we are in, are much more then just curiosity and include budgetary constraints, austerity measures and declining quality of care. So what are you waiting for?