Making Data Relevant: Irish Health Data

Call for Action

Data collected on behalf of the people of Ireland and paid for by their taxes should be available for use, reuse and redistribution as a right and under Service Level Agreement (SLA) in 21st century non-proprietary, machine-readable formats.

PDF is not an open data. Publishing reports in PDF format makes them inaccessible for processing and in effect renders the data unusable.

Open Knowledge Ireland and OpenStreetMaps Ireland  call on Brendan Howlin, Minister of Department for Public Expenditure and Reform, Leo Varadkar, Health Minister and Richard Corbridge, Chief Information Officer for the Health Service Executive in Ireland, to support the efforts of the Open Data Community to increase the usefulness of publicly available Health Sector Data, by ensuring its publication in an open data format.

Maker Party Round-Up

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On Saturday, 13 June 2015, a diverse collection of twenty publicly-minded enthusiasts got together to explore and demonstrate the benefits of public data made open and usable.

The day began with opening remarks by Denis Parfenov:

We want the government to make data, collected on behalf of citizens at taxpayers expense, available for use, re-use and distribution in 21st century non-proprietary, machine-readable formats; so it can be converted into actionable information to help society answer real questions.

A lively and

frank discussion led by Brian Costello and Eoin McCuirc from the Central Statistics Office followed – primarily detailing concrete ways to make data requests easy, fast and open. There was agreement among the wider group that making requests ‘public’ will help to make requests traceable and transparent and serve the public interest.

  1. The OpenStreetMaps (OSM) group followed detailed instructions (link) from Dave Corley, OSM Community Organiser in Ireland, and tidied up geospatial data for the 41 hospitals listed in the NTPF acute care dataset.
  • The intention was to use a publicly accessible, open format platform to provide a geospatial foundation for the Hospital Data Working group – but also make the same data available for anyone who wishes to make use of it;
  • The result is a clean and accurate list of hospital lat/long coordinates generated by Dave Corley and available here(link).
  1. The Data Wrangling group worked on available CSV data (which has been manually scraped on a monthly basis) on hospital waiting lists accessible to everyone:
  • The objective of this group was to transform inaccessible hospital data, published in PDF reports by the National Treatment Purchase Fund (NTPF http://www.ntpf.ie/home/inpatient.htm / http://www.ntpf.ie/home/outpatient.htm), into machine readable data formats (link to data);
  • The data will be used to provide quality analysis into how long patients are waiting for hospital appointments for May 2015 (link to data);
  • Participants self-organised themselves into an ongoing ‘Hospital Data Working Group’ to work on strategies of making hospital data accessible to everyone via an interactive data publishing platform;
  • This group identified that authorities not making this data available to the public in machine readable format is a major obstacle to identifying where one might get  the quickest hospital/specialist appointments or where one would have the longest wait.

3. The Social Media group discussed ways of making the activities & benefits of open data known to the wider public. Their primary recommendations are:

  • Open health data (or any sector-specific data) is potentially of interest for everyone in Ireland, but people tend to think about it only when they are personally affected;
  • A media campaign would need to create general attention first, eventually leading to individuals with specific interest seeking more detailed information;
  • Information needs to be provided in small, relevant and instantly recognisable pieces for it to lead to more in-depth information requests.

 Inspiration from Uruguay

Towards the end of this productive day, we established a virtual bridge with Daniel “Chino” Carranza (@danielcarranza / @DataUY) in Uruguay. Daniel shared http://datauy.org/’s inspirational story of co-creating a data-driven Health Care Dashboard (http://atuservicio.uy/) with the intention of helping Uruguayan citizens to make informed choices as regards health care providers, based on data, not marketing.

Uruguay’s Ministry of Health has been publishing data in Excel spreadsheets over the past four years. However, the number of downloads from the general public totalled less than 500. By making this same data accessible in an easily comprehensible and actionable format via http://atuservicio.uy/, we increased data exposure by over 7,000%! Taking the time to help the public understand the context of the data makes it active data.

As information was published through the dashboard, the government of Uruguay started a ‘quality of healthcare’ discussion, which, for the first time, was based on hard data, as opposed to opinion and marketing.

For more information

Health Data Maker Party on Storify: link
Photos on Flickr: link
Opening remarks: link
Daniel “Chino” Carranza’s slide-deck (link); video (link); full (rough) transcript of the call (link)
Hospital Waiting List project page (link)

Acknowledgements

Many thanks to everyone who participated in this workshop in person and virtually: Margaret Furr, Richard Geoghegan, Martin Kelly, Ruta Danyte, Robert Harte, Pamela Duncan, Salua Nassabay, Roslyn Fuller, Flora Fleischer, Dave Corley, Shawn Day, Daniel “Chino” Carranza, Dan Alexandru Bujoreanu, Eugene Eichelberger, Caroline Lewis, Ingo Keck, Brian Costello, Eoin MacCuirc, Steve White  and Denis Parfenov

Special thanks to the newly opened TechMeetup.space for hosting the event and to the Department of Public Expenditure and Reform (http://www.per.gov.ie/) for sponsoring the venue and providing tasty sandwiches and healthy refreshments.