How do you feel about your health information being viewed, shared and used by others?  

Health information can be valuable for making decisions about individual care, but also for managing the future of health services more broadly. Health leaders, researchers, and companies are all keen to have access to this information. But this is information about people, and those people should have a say in how it is viewed, shared, and used. This jury aims to let citizens in Ireland have their say!

IPPOSI is supporting a cross-section of 25 adults from different communities to meet online in April 2021. These 25 ‘jurors’ will hear from and ask questions of ‘witnesses’ who are experts in the area of access to health information. After hearing the testimony and asking questions, the jury will deliberate to arrive at their ‘verdict’ on who should have access to health information and for what purpose. The jury verdict and recommendations will be presented to Irish policymakers to inform health information legislation and the development of a national Electronic Health Record.

what is the process?

IPPOSI has designed this Citizens’ Jury as a three-phase pilot in 2021, with a view to running future juries based on the pilot learnings. Information on the three phases is available at the buttons below. If you wish to be updated on jury progress, you can sign up to receive IPPOSI emails at the sign up sheet below.

Phase I – Design
Phase II – Deliberation
Phase III – the Verdict

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FREQUENTLY ASKED QUESTIONS

What is a Citizens' Jury?

A Citizens’ Jury is a method of public deliberation that invites a cross-section of the public to learn about a topic over several days. The jurors weigh up the evidence presented by topic experts, and they generate their recommendations to public policy makers. Juries can be held in person, or online.

Why do we need a Citizens' Jury?

Juries are a form of active public participation, and they offer an important complement (or alternative) to written consultations and surveys. Juries allow citizens from different walks of life, to come together, to receive the latest expert information, to generate shared opinions and ideas, and to present citizen proposals to public policy makers.

Has this been done before?

Yes. Citizens’ Juries have been used in other jurisdictions as a way of getting citizens involved in public policy, and they have the potential to become commonplace in Ireland. The jury concept was developed in the 1970s, and the Jefferson Centre in the USA explains how a jury works. In 2016, in the UK, the University of Manchester together with the National Institute for Health Research organised a citizens’ jury on health data

Is this the same as the Citizens’ Assembly?

No. The Citizens’ Assembly is an initiative by the Government of Ireland to engage 100 citizens in discussions around key constitutional questions. Citizens’ Juries – while they sound similar – are initiatives which are undertaken at a smaller, more informal level. Citizens’ Juries are a public participation tool, and as such, anyone who wants to know more about how the public may think about a particular topic can employ this tool. Citizens’ Juries have been run by universities, NGOs, and consultancy firms.

What is Health Information?

Health information is information that is recorded when you attend a health or social care professional such as a GP or social worker. The record can include details about your medical conditions, lists of medication you may be taking and also includes personal details such as date of birth.

Source = HIQA National Public Engagement Survey on Health Information 2020 (Link)

Why now?

The need for timely, accurate, and reliable data about the health of the general public has never been greater. This 2021 Citizen Jury ensures that the views of the public will be heard, understood and used to guide the policy decisions that are needed to facilitate the robust collection, exchange, and analysis of health information in Ireland. It also aligns with IPPOSI’s ongoing involvement in the EU-level initiative – DataSavesLives.

Data Protection

To carry out the Citizens’ Jury, IPPOSI will process the data of the participants of the initial surveys and the eventual jury participants. Over 1,000 people have taken the initial & follow-up survey and a further 25 people will participate in the online Citizens’ Jury itself, with up to 5 reserves.

When personal, sensitive and special category data is processed, a Data Protection Impact Assessment (DPIA) must be carried out to identify and mitigate risks to the privacy of data subjects.  A DPIA is necessary to ensure that all risks to the privacy of survey and jury participants are identified and appropriate safeguards are put in place.

The DPIA for the Citizens’ Jury is accessible by clicking here (version 1.4). The IPPOSI DPIA has identified five risks, which are summarised in the DPIA text. The safeguards put in place to mitigate the risks are also summarised on pages 8-11 of the DPIA.

For more information on IPPOSI Privacy policy, click here

Funding

The 2020/2021 IPPOSI Citizens’ Jury is supported by resources from IPPOSI as well as unrestricted funding from the following sponsors/donors:

Abbvie, Alexion, Biomarin, GSK, Pfizer, PPI Ignite – Trinity College Dublin

Origin & Restrictions

IPPOSI is implementing a modified (online) version of a Citizens’ Jury, based on a method first developed by the Jefferson Center (USA) – https://jefferson-center.org/citizens-jury

The Citizens’ Jury is trademarked by the Jefferson Center.