|[Thurs, 23d May] ODI Meetup #7 "Give us our health data"||Denis Parfenov||5/13/13 7:42 AM|
Many thanks to Peter McCanney for a new 'Open Data Ireland' banner!
Please register (https://tito.io/open-data-ireland/meetup-7) and help to spread the word. (Twitter #hashtag: #OpenDataIRL )
|Re: [Thurs, 23d May] ODI Meetup #7 "Give us our health data"||Denis Parfenov||5/20/13 1:52 AM|
Open Data Ireland - "Give us our health data"
Open Data Ireland Meetup - notes for evening
Thursday, 23d May 2013 (18:30)
Registration page https://tito.io/open-data-ireland/meetup-7
Introduction - Denis & Niall
e-Patient Dave (~15 mins)
Roisin Doherty (HSE)
Demo of prescribing analytics - Niall
Panel discussion chaired by Niall:
Discussion points for panel discussion:
Is the solution to privacy concerns to anonymise data? Can health data be truly anonymous?
Does the good of society outweigh the privacy of the individual?
Allowing patients to opt-out is only effective if patients are aware of how their data might be used, and can trust the system. It must be informed consent. How should we tackle this challenge?
Is health data just too complex to be opened for public analysis? Taking surgical outcomes, is the range of factors influencing outcomes too complex for 'apples to apples' comparison of outcomes? For example, timescale for which outcomes are considered; level of risk of patients pre-surgery.
Quality of data was a key public concern in the Research Council UK public consultation doc due to the risk of poor decision making - but on the other hand, open data can expose data quality issues. What are your views on the balance between data quality and openness?
Does the public really have a role in accountability in healthcare? (e.g. Michael Neary - the system failed to detect his malpractice - shows the need for 'many eyes' on data in order to spot unusual patterns/malpractice?).
Who should steward open health data? How do we address the question of data quality, variation in the quality of data capture across the myriad of systems, the responsibility of effectively anonymising data.
Do patients really want to access their own data? Does this demand exist in Ireland?
In Ben Goldacre's book Bad Pharma, he gives an example of how an academic spotted a link between an anti-diabetic drug, Rosiglitazone, and heart problems - previously unpublicised. He was using data that had been made more publically available than the norm. The drug was suspended by regulators.
What is the role of open data in pharmaceutical testing?
Todd Parks, US CTO:
"Data is fuel for innovation, and developers and entrepreneurs are key players who can turn that fuel into innovations that matter. That’s why one of the many ways the US Government is contributing to the transformation of health care is by unleashing vast amounts of data from the vaults of government, while rigorously protecting privacy."
Quote from an administrator in a GP practice in Ireland, when asked if the patient could have a print out of their own blood test: "I don't think we're allowed to do that"
Ireland - Data concerns over audit system
UK - Open Prescription Data
UK - purchasing of individual data by private companies
NHS - open data commitment
Notes by Niall O’Neill
|Re: [Thurs, 23d May] ODI Meetup #7 "Give us our health data"||Denis Parfenov||5/22/13 7:52 AM|
It would be great, if - in the spirit of ODI community - you could use your networks to spread the word about tomorrow event
Or just click RT button:
Cheers and I hope to see you tomorrow.
|Re: [Thurs, 23d May] ODI Meetup #7 "Give us our health data"||Denis Parfenov||5/29/13 5:27 AM|
ODI #7 wrap-up http://data.fingal.ie/Blog/May2013/Name,36932,en.aspx by Tom Stewart