Health information refers to the information about you that is relevant when it comes to making decisions about your health. The concept of health information is evolving as the health system moves from paper records to electronic records.
For example,we now rely on our personal devices to track things like our heartbeat, our sleep patterns and how much exercise we take. Should this information be part of our health record? Should it be shared with healthcare professionals? Should we be able to access our own health information or should it only be accessible to professionals?
Earlier this year, ADAPT collaborated with the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) on its Citizens’ Jury on Access to Health Information which explored these questions and more. The results of the Citizens’ Jury deliberations were published recently.
In advance of the Jury, ADAPT hosted an online Citizens’ Think-In, a public discussion, on the topic of Digital Health Information. The Think-In explored the question: “What is my Health Information?”. Scenario discussions yielded insights into the public sentiment towards health information. These were subsequently taken into consideration when preparing for the Citizens’ Jury.
You now have the opportunity to join a follow up discussion about “What Is My Health Information?” on 7 October 2021 from 6.00 – 7.45pm.
The Think-In will explore questions like:
– What does Health Information look like in the 21st Century and why is it important to us as citizens?
– How can digital technologies empower us to manage our health and reorient our health services to be more inclusive, people-centred and efficient?
In September, the Citizens’ Jury’s deliberations were published by IPPOSI, setting out six recommendations for policy-makers and expressing a strong preference for greater access to health information in Ireland. The jurors underlined that health information must not only be easily accessible to every citizen who wants to view it, but that citizens must be able to actively manage, and consent to, the use of their information on an ongoing basis.
Highlights from the deliberations indicate that health information should contain up-to-date, complete, joined-up data which provides an accurate and comprehensive account of the individual’s history of contacts with the health service and his/her health record; and that health information must be first shared with every citizen who wants to view, and potentially control access to, their own health information; while it should never be shared with employers, banks, or insurance, pension, and marketing companies.
To download the full verdict report, click here
ADAPT researchers who were members of the Citizens’ Jury Oversight Panel:
The use of our personal medical data is a thorny issue. Who owns the data? How safe is it? Who gets to use it and for what?
The Trinity PPI Ignite Office and IPPOSI will host a webinar on 4 October 2021 from 18.00 – 19.00 about using health information for research. Register now to find out what the Citizens’ Jury said about the use of personal medical data in research and what it might mean for future research: https://t.co/LmLUaTSm5k?amp=1
Our partners @ait_research @TUS_ie will be an #AI hub for our #DiscussAI initiative. Join the #scienceweek event this Nov 11th. More info: http://thinkins.adaptcentre.ie/events/ @CaitMordan @atimcluster
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