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Hospital Waiting List – Open Knowledge Workshop #1

- April 12, 2017 in Hospital Waiting List, Open Data

On a sunny Saturday, May 25th Open Knowledge Ireland held a workshop powered by citizens focused on discovering how Open Data can help the ever present Hospital Waiting List problem. With the workshop we created a space to build engagement around open data and hospital waiting lists and offered participants a practical way to get involved. The workshop was possible because in December 2016 the NTPF published Hospital Waiting List Data on data.gov.ie as machine readable data for the first time. Hospital Waiting List data can now be found here, here, and here. Hospital Waiting List Workshop #1 focused on identifying & discovering the patient journey, the data that is available, an operating model for use case creation using open data and a long list of potential use cases that for prioritisation at Hospital Waiting List Citizen Workshop #2. The workshop benefited from having experienced professionals from a range of new and disruptive fields of industries and expertise. On the day OK Ireland facilitated Data Analysts, Customer Experience SMEs, Technology Solution Consultants, Digital Natives, Students, and Coders. OK Ireland provided Open Data insights from Ireland and abroad and framed the topic for the day – ways of using open data to address the growing Hospital Waiting Lists in Ireland. Here is an account of Piush Vaish – a participant at the 1st Hospital Waiting List workshop citizen about how the day went. The post first appeared on his LinkedIn page.  

Ways to Improve Hospital Waiting List Using Open Data

Ireland has one of the worst hospital’s waiting lists in the developed countries. We all know someone or ourselves experienced the uncertainty of the length of time to see a specialist. We constantly wonder about our health while we wait. For instance, I had to wait overnight to be seen by a specialist at Beaumont hospital. It affects not only our physical but mental health as well while we wait to hear back from the hospitals. Therefore, when an opportunity came to tackle the problem of hospital waiting list using data I had to do something. That chance came through a workshop/hackathon organized by Open Knowledge Ireland on 25th March 2017. It was the first in a series of hospital waiting list focused workshops held at Guinness Enterprise Center. Open Knowledge Ireland is a part of Open Knowledge International with the goal of opening all essential public interest information. It is a non-profit organization dedicated to promoting open data and open content in all forms to create insights that drive change and benefit the public at large. When I arrived at the venue there was a short session where we got to know the other participants over a cup of tea and biscuits. The group of participants came from a different background with various different skill sets and industry experience. Some of them were UX designers, web/ application developers, statisticians, past participants and data scientists. However, we all had one reason to be at the workshop. The motivation was to tackle a very real social problem as a group of experts and for our citizens by using public data about hospital waiting lists to make that information easily accessible for everybody. Afterward, we took up an office in a special set-up meeting room to learn about the work of Open Knowledge Ireland, what open data is and the reasons why we should be interested in the hospital waiting list data.     Open Knowledge Ireland explained their mission, vision, and values. The hospital waiting list datasets are produced by the National Treatment Purchase Fund (NTPF). Since July 2012,the NTPF is responsible for the publication of outpatient and inpatient waiting lists. However, they originally published this data in pdf format which is not considered an ‘open’ data format. It limits the usability of the data. Hence, Open Knowledge Ireland has worked over the last two years to create examples of how the Out-Patient Waiting List and Inpatient/Day Case Waiting List can be published in easily accessible format. They also worked together with the NTPF and the Department of Public Expenditure and Reform to get this data published in machine readable format. In December 2016 hospital waiting list data was for the first time made available in machine readable format on data.gov.ie. This now enables anyone to download the datasets and do any sort of analysis on it. The format of the workshop was unconference or open space conference. It was my first time attending such a conference. We were given a problem statement but we were free to tackle it in any way the group thought to be most useful to understand the problem more. The agenda was driven by the participants and their expertise in technology, digital, User Experience design, Digital, Analytics and backgrounds from various industries. There were no narrow topics pre-determined, no keynote speakers invited and no panel had been arranged – so the workshop was very interactive and very driven by the participants themselves. The topics to be discussed were refined through the participation of the attendees to problem statements that could be tackled and looked at in one day. If a session among a group did not inspire an attendee or was not contributing, then he/she were free to get up and find a different group.This enabled everyone to leverage and play on their strength, do research and contribute to understanding the problem statement based on their own experience. We convened at the individual breakout sessions to discuss the progress of each working group and share learning’s between the working groups. In my opinion, this process helped to apply ideas and empowered participants to share their ability. This offered an opportunity to have an unfiltered exchange of creative ideas.   My first work group was working on mapping the journey for the patient right from getting a symptom till diagnosed by the specialist. The aim was to document the end to end experience of the patient through their perspective, understand how patients are interacting with their general practitioner or hospital, find pain points, identify areas for improvement and improve the experience moving forward.     The visualization inspired us to seek value-driven decisions based on a patient’s experience model of performance. There was another group who mapped a patient’s journey from through A&A as well as how this journey is currently tracked and how this data is collated by one specific hospital. This was to understand the pain points that hospitals may come across when gathering and providing the data.     Later, we swapped our findings to create a complete picture of the patient’s journey. I then swapped from the journey mapping group to another group that was working on data validation. It was essential for the long-term success of the project that the data is open, correct and useful.     We ensured that the data gathered by NTPF was using data/statistical standards. While I was engaging with different groups, the other participants were engaged in data analysis, creating an API and researching the problem in other countries. The below figure shows an early view of the type of insights that can be generated using the hospital waiting list data that is available on data.gov.ie today. We also had a short video presentation by Bob Harper from Detail Data who created the Hospital Waiting List Dashboards that are available for Northern Ireland (http://waitingtimesplus.surge.sh/). He explained how he is using the data provided by NHS on his website to present information in a way that is more easily accessible to and understandable by the public in Northern Ireland. At the end of the day, we all presented our findings to the group and decided what we’ll focus on during the next workshop. Some of the points we aim to discuss in the next workshop are: –
  • Understand existing Hospital Wait Time data publicly available in the Republic of Ireland
  •  Understand and highlight data gaps
  • Recommend additional data points required to build tools useful to citizens (suggest via data.gov.ie)
  •  Identify quick-win use cases and begin prototyping
  • Identify more complex use cases and next steps
If you are inspired by what we have achieved and interested to continue the journey to empower the public please register your interest by attending us at the next workshop.  

Open Health Data Night @ Science Gallery

- January 5, 2016 in Events, Hospital Waiting List, OGP Ireland, Open Data Ireland

Building on the health data meetups that took place in March 2013 & in May 2013, and Health Data Maker Party, June 2015 we will be hearing about how open health data can save lives and help all of us to make better-informed decisions. We’ll also have a panel discussion on open health data to see how we can overcome some of the challenges. Open Data Ireland was set up with the purpose of helping citizens access high value, machine readable datasets generated by the Irish Government. This community meetup is organised by Open Knowledge Ireland and WikiMedia Ireland. It will bring together people who are passionate about sharing, learning, using and progressing Open Data in Ireland. Date: January 20th
Time: Doors open at 18:00. The event will begin at 18:30 and finish at 20:00
Place: Science Gallery, Pearse Street. Register here: https://ti.to/open-knowledge-ireland/OPEN-HEALTH-DATA-NIGHT-at-SCIENCE-GALLERY The theme for this Meetup is “Trauma” This meetup will be facilitated by Eugene Eichelberger Guest speakers and panelists include:

Festive Greetings From Open Knowledge Ireland

- December 31, 2015 in 2016, christmas, Events, Hospital Waiting List, new year, OKFN Ireland, Open Knowledge Ireland

We, Open Knowledge Ireland, would like to send all our supporters a big “Thank you” for your help in the last year. By participating in our events, speaking up in support for openness and transparency, and even by donating time, effort or money to us, you helped to make a difference. 2015 has brought some important new developments to Ireland. After years of lobbying, even going up as high as the EU, Ireland government finally started changing the  public sector information re-use licenses to open ones [http://www.per.gov.ie/en/minister-howlin-signs-regulations-to-enhance-the-rights-of-citizens-and-businesses-to-re-use-public-sector-information/].
News and Events
Featured Events 
Open Health Data Nigth @Science gallery
Important Dates
Wednesday, 20th January
While up until some months ago, commercial re-use of public data was widely prohibited, now everyone can create exciting new stuff based on the data that we all helped to pay for with our taxes, making Ireland’s public data real Open Data. We will of course continue our efforts to guide and counsel the public authorities on this topic, helping (and sometimes pushing them) forward to open up more data that is of importance for Ireland’s citizens. [http://openknowledge.ie/irish-open-data-wishlist-ireland-falling-behind-its-open-data-promises-and-international-best-practice/]Speaking of Open Data, we must admit that we have not been successful enough with our fight re-establish trust in Ireland’s charity sector by opening up Ireland’s charity data in 2015. While we still believe that it is the wrong way to spend millions of euros in a private company to digitize and re-sell charity budget data [http://openknowledge.ie/open-data-ireland-charity-transparency/], instead of simply creating an open and easy to use data base for a small percentage of these costs [http://openknowledge.ie/opening-up-charities/], we accept that the Irish media may not seem this topic important enough to pick it up.We will continue with our efforts to open up more Irish Health Data [http://openknowledge.ie/projects/open-hospital-waiting-list/]. We were able to join forces with Wikimedia Ireland to bring to you a special Open Health Data evening in the science gallery this January 20th. Please join us for discussions there:

OPEN HEALTH DATA NIGHT @ SCIENCE GALLERY

JANUARY 20th (18:30-20:00), doors open at 18:00 REGISTER ON https://ti.to/open-knowledge-ireland/OPEN-HEALTH-DATA-NIGHT-at-SCIENCE-GALLERY

Support us!

Please help us continue our work in 2016! We accept all kind of help, giving us your time and participation in our events, hosting space for events or virtual space for our web pages. We also accept bitcoins and various kinds of money, so supporting our fight for openness and transparency is just a click away: http://openknowledge.ie/donate/ That leaves us just one more thing to wish for:

Merry Christmas And A Happy New Year 2016!

Making Data Relevant: Irish Health Data

- June 26, 2015 in #OpenDataIRL, Brian Costello, Caroline Lewis, Dan Alexandru Bujoreanu, Daniel "Chino" Carranza, Dave Corley, Denis Parfenov, Eoin MacCuirc, Eugene Eichelberger, Events, Flora Fleischer, Hospital Waiting List, Ingo Keck, Maker Party, Margaret Furr, Martin Kelly, Open Knowledge Ireland, Pamela Duncan, Richard Geoghegan, Robert Harte, Roslyn Fuller, Ruta Danyte, Salua Nassabay, Shawn Day, Steve White

Call for Action

Data collected on behalf of the people of Ireland and paid for by 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 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

Screen Shot 2015-06-26 at 10.23.35 On Saturday, 13 June 2015, a diverse collection of twenty publicly-minded enthusiasts joined to explore and demonstrate the benefits of public data made open and used. The day began with opening remarks by Denis Parfenov:
We want the government to make data collected on behalf of citizens and at taxpayers expense available for use, re-use and distribution in useful 21st century non-proprietary, machine-readable formats; so it can be converted into actionable information to help society to 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. Participants then broke into 3 focussed working groups:
  1. The OpenStreetMaps (OSM) group followed detailed instructions (link) by the OSM Community Organiser in Ireland Dave Corley and in a determined effort 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 cared to make use of it;
  • The result is a clean and accurate list of hospital lat/long coordinates generated by Dave Corley and available (link).
  1. The Data Wrangling group manipulated the 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 / link to project page)
  • This is a requirement to be able to use the data 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 a major obstacle to persons identifying the hospital at which they may get the fastest specialists appointments or where they would wait the longest is the authorities is not making this data available to the public in machine readable formats.
  1. 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 seeking of more detailed information by individuals with specific interest;
  • 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

At the end of the 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/) which helps people of Uruguay to make an informed choice of health care provider base on data, not marketing. The Ministry of Health of Uruguay published data in Excel spreadsheets over the past 4 years. However, the number of downloads was a meagre 500 cases. By making this same data accessible in an easily comprehensible and actionable format via http://atuservicio.uy/ increased data exposure by over 7,000%! Taking the time to help the public understand the context of the data makes it active data.
With the information was published through the dashboard, the government of Uruguay started a quality of healthcare discussion, and for the first time based on data, not on 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 newly openned 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.  

Maker Party: Health Data

- June 5, 2015 in Events, Hospital Waiting List, OGP Ireland, OKFN Ireland, Press Release

Join us on Saturday, 13. June, to prove that health data can be more useful if it’s accessible and available for reuse in open formats! Date: 13. June 2015
Time: 10am – 6pm
Venue: T-Cube Fleetstreet (next to Palace Bar)
Registration: https://ti.to/open-knowledge-ireland/maker-party-hwl We will be working all together on our Open Hospital Waiting List Project to:
  • increase transparency and accessibility of hospital data (i.e. waiting lists) through data liberation;
  • apply data to Open Street Map (OSM);
  • develop a strategy to make this information and the whole subject known to the wider public.
This April, over 190,000 people were waiting over six months for their first appointment with a hospital specialist in Ireland – of these over 11,000 were waiting more than 2 years. Waiting so long for that first specialist appointment results in poorer health outcomes, more expensive treatment and in some instance unnecessary and premature deaths. The National Treatment Purchase Fund (NTPF) publishes its Out­Patient Waiting list and In­patient/Day Case Waiting list reports in PDF format which makes them impossible to access automatically thus limiting their usefulness. Over the past few months Open Knowledge Ireland has scraped the data from these NTPF lists and created a dataset of easily accessible information, available on https://openknowledge.ie/projects/open-hospital-waiting-list/. At our maker party we will drive this process even further with the goal to develop a movement for open health data in Ireland. Register here and get more information! Open Knowledge Ireland (h​ttps://openknowledge.ie/)​ is the regional chapter of the global non­profit Open Knowledge network. Open Knowledge Ireland is at the forefront of Ireland’s Open Data community with the aim of developing a self­sustainable, enabling ecosystem for open data to empower citizens and organisations to make better informed, evidence­based decisions. Members of OK Ireland are technology experts and experienced civic activists, with expertise in implementing the best global open data practices and tacit knowledge of unique challenges in Ireland. We are passionate about openness, and using advocacy, technology and training to unlock data to enable people to create, manage and share knowledge.

Hospital Waiting Lists: Making National Treatment Purchase Fund (NTPF) Data Available in 21st Century format

- May 11, 2015 in Adrian Corcoran, Denis Parfenov, hospital, Hospital Waiting List, NTPF, Open Data, Open Data Ireland, Press Release