283 datasets and counting.

You Are Here: Fingal Open Data >> Blog >> May 2013


7th Open Data Ireland Meetup

Posted by Dominic Byrne on Tue, 28 May 2013 11:45:19 BST

The 7th Open Data Ireland Meetup took place on Thursday 23rd May in EngineYard, Barrow Street, Dublin. The theme of this meetup was Give Us Our Health Data, and was attended by around 40 people.

Eamon Leonard @EamonLeonard kicked off by celebrating the fact that the Irish Open Data and Open Government community has been growing for more than 3 years now, and how important and timely it is to encourage as many different perspectives as possible to come together around these issues.

Niall O’Neill @nialloneill facilitated the evenings discussion and gave an initial outline of 2 distinct categories of Open Health Data -

1) Open Public Health Data - data structured for all to access and use, and which can’t be linked to patients, such as surgeon outcomes, cost effectiveness, or risk of iatrogenic infections by hospital

and

2) Open Personal Health Data, or Data About Me.

(slidedeck / notes)

Niall said that Open Health Data was important for 2 main reasons: as a driver and fuel for innovation, and for transparency and engaging  and enabling public and patients participation through access to data.

The first speaker by Google Hangout was ePatient Dave @ePatientDave. Dave spoke about his history as a Patient Advocate, and the current demographic challenge in health of people living to 65+ and the potentials for innovative change in the patient relationship with technology and increased participation through data access. Dave’s talk on TED

He highlighted that the sole reason to record anything is so people can read it back accurately, that the presence, absence and quality of data when decisions are being made is utterly critical, and that the resources that is most often underutilized in our health systems are patients themselves.

Based on his experience of disruption in the typesetting industry by home computing, with tools such as fonts becoming available outside of a limited circle, and how earlier disruptions such as the Gutenberg press made information available to a new class of people and fundamentally altered society, Dave argued that making health data available and comprehensible is a real disruption, connecting end users with something they need more freely and efficiently, and putting capabilities in the hands of patients and their families.

Dave offered the metaphor of ‘Let My Data Go’ for patients records, quoting Dr. Danny Sands on transparency and participation in medical practice - ‘How can patients participate if they can’t see as i see?’. He argued that there is a necessary move towards using medical records as a shared working document between patients and medical practitioners, because people perform better when they’re informed better.

He gave cases where patients are taking the lead in innovation with self-testing and self-monitoring to real-time, such as the example of Hugo, a patient with cardiac arrhythmia and an implanted defibrillator, where he was given no access to the sensor data, while his doctor experiences full, unrestricted access. In a response to this information asymmetry, Hugo self-generated a digital health profile, using tools such as Fitbit, a blood pressure monitor linked to his phone. WiFi-enabled bathroom scale, and a Zeo sleep manager. Hugo also started an online community for patients, which includes a software attorney, and is campaigning to get access to the source code on his defibrillator.

Dave said that the same reasons being given against open health data in Europe as were used in the US 4 years ago, such as inability to understand the data. He argued that if the data is unclear, make it clear. Adding better software to the data enables enables understanding, which improves health outcomes. With new technology, comes new powers and new risks - we can and should expect them, and plan for them.

Dave closed by saying that the work can’t begin until the data is released, and asked to ‘Let Patients Help’, by persuading clinicians and policy to view patients as resources and active partners in a participatory model of medicine. ‘Patient’, Dave asserted, is not some abstract word, but will be coming to your breakfast table sooner or later. He closed by saying the best time to innovate is now, before that time comes.


Next up was Roisin Doherty from the HSE.

Roisin stated that there are significant problems and barriers facing open health data in Ireland, in relation to locating it, retrieving it, and the quality assurance of the data. She argued that while there is often the impression that IT can get solutions fast, if the underlying data has problems, you’re not going to get a good result. Roisin stressed that its all about people, how they will use technologies in practice, and the need for data quality assurance and verification.

Roisin discussed how there is currently no unique identifier or Individual Health Identifier (IHI) for people in the Irish health system. making access to patient health records an issue for health providers and for patients.  If the data cannot be gathered, it definitely can’t be made open.

She stated that for legal reason regarding privacy legislation, Individual Health Identifiers have not been used in Ireland to date, but that incoming legislation in the form of a Health Information Bill is to be out before the end of the year.

Roisin argued for the need to decouple identity data from health data, and that where there was a requirement to use data from existing systems for a purpose other than what that information was originally to be used for, that in the balance between privacy and access to records there needs to be a ‘break glass’ emergency protocol for records access, to be audited and logged with justifications.

Roisin also noted the pressure from the Troika for unique ID for tracking prescription drugs, and the lack of IHI’s  as contributing factor to the total HSE spend.


A Questions and Answers followed, with discussion points including:

  • Whether the HSE tech platform was homegrown or tools - National Standards-based, with standard codeset for services.
  • Is there a need for leadership in pushing out standards - key driver.standards will have to be applied for hospitals to be paid.
  • Roisin argued that while the current legislation protects the public from commercial interests, legislation needs to be fit for purpose it is mismatched in relation to decision-making when lying on a trolley unconscious in hospital - differing opinion that the privacy is protecting fundamental rights of EU citizens.
  • The economic situation as a driver, and the role of the Troika as a strong push factor in pushing changes forward where the leadership and urgency was not there within the country.

After the break, with pizza and beer courtesy of EngineYard @EngineYard, the panel discussion on Open Health Data was chaired by Niall O’Neill and featured Daragh O'Brien @daraghobrien, Information Quality, Information Governance & Data Protection Consultant, Leonora O'Brien @leonoraobrien, the CEO of Pharmapod @pharmapod an Irish startup providing an incident reporting and learning platform for pharmacies, and Howard Johnson, Clinical Lead of Health Service Executive Health Intelligence Unit @HSElive


Discussions topics included:

  • Does the  good of society outweigh the privacy of the individual, or how can we strike an appropriate balance in the design of systems and controls?
  • While the US conceives data protection as a property right, in the  EU it’s seen as a fundamental human right - the privacy aspect needs to be considered in context.
  • ‘is health data too complex? No. There is an issue that despite significant sums being spent on technologies, doctors and nurses can’t get the data, let alone patients.
    This was seen as less of an IT problem, seen more as an organizational, cultural and values problem.
  • Potential for small mistakes leading incrementally to a catastrophe.
    The analogy of an ‘air crash black box’ and safety records led to discussion on the need for feedback and error-checking for retrospective learning, by sharing and  analysing the data internally with professionals, or the wider communities.
    The average clinician does not have any simple technology to alert them to possible mistakes with a ‘beep’.
  • Medicine as slow to adopt to patient integration and interaction - especially the patients  family as a support network. Attitudinal change resharing information/data over GP-patient one-off and move from a ‘priestly profession’ mode of culture, to a more collaborative culture of engagement and participation.
  • Howard Johnson stated that the HIU has received more requests to analyse or provide health data in the last 2 years than the last 10 - financial efficiency in our economic context requires evidence-based decision-making to justify investments.
  • In the UK’s recent Caldicott Information Governance Review on the balance between privacy and sharing in health care data, it was recommended that patient have the right to withdraw their information, while Health Authorities should promote awareness on the benefits of sharing information, and have the confidence to share information inside institutions. It was asked whether this might be a model for Ireland - Howard stated that this is seen as a best practice model.
  • The example from Ben Goldacre in Bad Pharma was cited, where an academic spotted a previously unpublicised link between an anti-diabetic drug, Rosiglitazone, and heart problems, by using data that had been made more publically available than the norm. Is there a role of open health data in increasing  accountability - If you open data, when there are still issues with quality, a benefit is that ‘sunlight is the best disinfectant. However, if the data is assumed to have high quality, accountability for outcomes may fall on those who use it.
  • If you trust data to a certain point, it can let you make great deductions, however if you trust it  too much, you can make great mistakes.
  • While there is much opportunity to rework successful models of practice from elsewhere, there is also the potential to stop taking solutions from abroad, to solve our own problems and to export solutions. It was added that in implementing solutions it is best if‘ you design a system as if everyone is operating on post-its, then put technology around that reality.
  • There was a broad consensus that all the necessary pieces of the jigsaw there, they just all need to be drawn together.

The meetup wrapped up with details from Denis Parfenov @xzy_ on Irelands recent submission of a Letter of Intent to join the Open Government Partnership.

The next Open Data Ireland Meetup #8 will concentrate on the Open Government Partnership process, and developing actions within the Grand Challenge thematics.
The event will take place on Thursday 20th June 2013 at 6:30pm in Engine Yard https://tito.io/open-data-ireland/meetup-8
Booking at https://tito.io/open-data-ireland/

Thanks to everyone who attended and to Niall O’Neill for facilitating the discussion. Many thanks to Richie Bowden @rbconsulting, Ronan McDonnell @ronanmcdonnell, Liam Ryan @liamhq, Tom Stewart, Niall O’Neill and Denis Parfenov for organising. Special thank you to Eamon Leonard for hosting.

#opendatairl  tweets from the meetup have been storified at http://storify.com/Fingal/7th-open-data-ireland-meetup

Tom Stewart, 
27th May, 2013.

Comments

blog comments powered by Disqus