Renewed interest in Open Data for Health

Recording of our call last week on Open Data for Health: https://youtu.be/xBcdlNYdz10

Health and sports are arguably the most popular and personal topics that were addressed during the Swiss series of open data community events. From personal wellbeing to the national health system, the questions are of wide and urgent concern, and connected healthcare presents some of the biggest challenges in terms of obtaining data and campaigning for openness. Already today open data brings an advantage in diverse applications – from medical references to directories of health services, in linking health to environmental monitoring, as part of open access to research, even financial data and new business models – not in the least in the emerging medtech field.

Since our Health-themed hackathon in 2012 (see blog posts in German and in French for a recap), interest was expressed from our community in renewing the topic of Open Health Data in Switzerland. On August 14, we ran a call with some of the interested parties to look at new projects, review trends and possibilities, gather feedback on how best to support community activities & data needs. Some interesting ideas were discussed by an enthusiastic group well suited to continue the thread.

Many thanks to the National Archives for hosting us, to our participants for joining in, and especially to Philipp Ackermann from the Zürich Faculty of Applied Sciences in Winterthur and to Mark Silverberg joining us from the USA. Philipp approached the association with an impressive multifaceted student project aggregating diverse open health data on a national and international level into a series of visualisations. Mark, who we met through the open data community on Slack, called in to share a series of sophisticated and heavily used web applications that put open data into the hands of patients, doctors, city planners and anyone else concerned about health trends. See below for meeting notes and links to everything presented.

Oleg Lavrovsky (@loleg) started off with a recap of past events and a summary of what Opendata.ch can offer to a Health focused interest group – as well as to anyone who wishes to use, promote or publish health data in or about Switzerland:

• an open health data wiki leading to resources and projects from an engaged community
• an active collaboration with Swiss government, at a time when e-health is a national priority
• experience in encouraging organizations, field experts, scientists to share usable findings
• connections to international networks such as Open Knowledge and the European Union
• a growing capacity to provide feedback and grassroots training in open data and its uses

At our meeting in Bern, Philipp Ackermann who works with Kurt Stockinger at ZHAW Winterthur, shared background (slide presentation, 1MB PDF) and gave a live demonstration of their health visualisation project, key data for which was published openly by the Federal Office of Public Health. They shared insights into their experiences using Open Government Data (a little metadata goes a long way! formats like JSON should be provided to improve development experience! it is not easy to get contact and support from the source!), which helped them get a much richer insight into the national situation than our hackathon projects. It is really encouraging to see this a student project with data journalism quality, and what the next level in this project may bring, currently in German only, but also something we would like to help address. We talked about the use of such visualisations in teaching, media, and open access to accurate and relevant information.

Mark Silverberg working on Health Data at the company Socrata gave us an overview of the open health data situation in the USA. Things are progressing steadily since Obamacare brought in place mandated processes to opening data, with examples for us to check out including – at the federal level: data.cms.gov, data.medicare.gov, openpaymentsdata.cms.gov, pillbox.nlm.nih.gov, data.cdc.gov, and at the state/local level projects like: Live Well San Diego, Chicago Health Atlas and Food Inspections Data. Of special interest to non-profits, he mentioned naccho.org (an open data site coming soon), and recommended the annual Health Datapalooza conference in US about health data (increasingly with international focus), organized by the Health Data Consortium, with the next one in DC in May 11-16, 2016. Finally, Mark gave us a peek at a new alpha search platform he works onopendatanetwork.com, which can be used to find health and other open data. Inspirational stuff! Follow him as @Skram on Twitter.

Yann Heurtaux (@Shalf) talked about how health data hacking is an emerging topic at UniverCity (@univercity_ch), the open, community-driven, education and research laboratory he works at in Renens, VD (Grand Lausanne area) where coworking meets citizen science, DIYbiology, all kinds of maker activities and hacktivism. He shared perspective on biohackers in Switzerland such as hackteria.org who first paved the way. Yann co-founded Hackuarium.ch /  wiki.hackuarium.ch in February 2014, and the community is now a part of UniverCity. One of the main projects being addressed by the Hackuarium community at the moment is the Open Food DNA Project. It was started because it is relatively easier to work with food chemistry and genetics data as compared to data on human health, and to try to provide education and awareness of the general public on those topics.

Addressing this on November 5, Yann will be hosting and co-organising a Biomedical Data & Ethics meetup in Lausanne. The next annual Opendata.ch/2016 conference will be in Lausanne next summer and might have this as a big topic on the agenda, so there will be plenty of opportunity to showcase open health data projects. As a call to arms, Yann also shared the latest announcements of a new Paris-based cancer research collaboration between Roche and potential biohackers: Epidemium.cc, and the medtech expo at SXSW he attended this year. See 2015 talks on the subject of health and especially Open Health Data as an Open Challenge, also on the Open Knowledge blog.

Via Manfredo Atzori, the team from medGIFT Research Group will be holding a networking session at ICT2015 (20-22 October, Lisboa, Portugal) – aim is to foster exploitation of clinical data fostering the creation of proposals to share, standardize, protect and analyze clinical data under a common framework – thus advancing learning healthcare systems. Suggestions & co-participants welcomed.

Evelina Georgieva from Swiss startup Pryv wrote in to say there will be another hackathon focused on health soon. At Pryv, they are already supporting Hacking Health Zurich and the Ark Foundation in Valais for the next events. We will be glad to learn more about this young startup and it’s exciting open source development platform.

A quick reminder that the Swiss Federal Elections are coming up, and health policy is a big and controversial topic on the minds of the electorate. We will run several meetups like the one next week in Lausanne, and a national hackathon on September 4 & 5: details and sign up on make.opendata.ch/elections

As our association’s president André Golliez encouraged us during the call, let’s go ahead with a Swiss Open Health Working Group and an Open Health hackday in 2016, connected to the My Data movement and the kind of disruptive thinking that our community brings to the fore! Join the conversation by commenting your thoughts here, on our mailing list, forum or social media, as your interest and encouragement can only help us to accelerate for better health with better, more open data.