Summary
In 2021 IPPOSI presented the Irish public with an unprecedented opportunity to share their perspective on who they would be comfortable with accessing their health information and for what purpose. The full jury verdict report at the link above sets out the recommendations and conditions proposed by the the 25-person jury, as well as the key themes, concerns and expectations expressed during three weeks of deliberations. A shorter summary version is also available for download at the link below.
The patient perspective
Following our Citizens’ Jury, IPPOSI aimed to further explore public and patient attitudes around access to health information. In Dec 2021, we published The Patient Perspective on Access to Health Information, a report that compiles the findings from two new surveys – one of patient organisation leaders, and one of patient organisation members. The questions we asked in these surveys mirror the questions we asked of the jurors involved in the Citizens’ Jury and we completed this research with the goal of better understanding where public and patient perspectives converge.
The jury process
IPPOSI designed and delivered this online jury in 2020/2021, based on methodology from the Jefferson Center (USA). IPPOSI has published a reflective analysis of our experience of delivering this 100% online jury – which you can download at the link below. The analysis contains an independent research report from Dublin City University on the deliberative quality and outcomes of the jury process.
Witness Recordings
The jury members were provided with ‘testimony’ from expert ‘witnesses’ to ensure that various points of view (both partial and impartial) are considered by jurors in arriving at their verdict. This approach allows jurors to make ‘informed recommendations’, to positively influence health decision-makers to take their verdict ‘under strong consideration’ in deciding the direction of travel for legislation, policy, and practice around the topic of providing access to people’s health information.
The Oversight panel
The Oversight Panel provides a wide range of expertise from academia, patients, citizen engagement, eHealth and research fields. These expertise ensure that the jury mission and design are relevant, accessible, accurate and free of bias. All materials prepared for the jury are reviewed in advance by the Oversight Panel.
The oversight panel met online on a monthly basis and a sub-group of the panel focused exclusively on mitigating the introduction of bias into the process.
Data Protection
To carry out the Citizens’ Jury, IPPOSI processed the data of the participants of the initial surveys and the eventual jury participants. 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 below. The IPPOSI DPIA 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 was supported by resources from IPPOSI as well as unrestricted grants from the following sponsors/donors:
Abbvie
Alexion
Biomarin
GSK
Pfizer
HRB-IRC-PPI Ignite – Trinity College Dublin