A nationwide campaign has today been launched to identify 25 members of the public, broadly representative of the Irish population, willing to step up as members of a Citizens’ Jury to deliberate on the matter of access to health information.
The campaign is the brainchild of IPPOSI, the Irish Platform for Patients’ Organisations, Science & Industry. Following careful deliberation by the jury, the aim is to arrive at a consensus on the issues raised, with recommendations delivered to Government in the context of the development of new health information legislation and the creation of a national Electronic Health Record.
For Dr. Derick Mitchell, CEO of IPPOSI, the Citizens’ Jury is an opportunity to “cross-examine” the experts: “I think it’s fair to say that people generally acknowledge that health professionals need to be able to access our health information when it comes to delivery of our individual treatment and care. Nurses and doctors need to able to look up our charts to review our medical history before deciding on what investigations or treatments to undertake.
“However, when it comes to use of that information for a wider purpose, such as informing developments in broader health service delivery or research, people want to know more about who will be looking at their information and why. There can be strongly-held views both for and against and it’s fair to say that, in this regard, the jury is still out.
“With this Citizens’ Jury, we want to assemble a group of people reflective of the Irish population, who would hear a wide range of perspectives from experts and who would then have the opportunity to ‘cross-examine’ them.
“We want to know the jury’s views on whether a balance can be struck between individual information needs and using that information more broadly when in the public interest. If so, how do we ensure transparency and trust in the system to safeguard its use?”
For Dr Jane Suiter, Associate Professor at Dublin City University, and member of the Citizens’ Jury oversight board, jury members will perform an important public service: “We have already seen with the Citizens’ Assembly put in place by Government how useful and worthwhile such gatherings can be in teasing through sometimes complex issues and reflecting the view of the wider public.
“Similarly, with this Citizens’ Jury, we want a really broad section of members of the public to be able to tease out the pros and cons of accessing health information.
“I would encourage everyone who would like to perform this important public service to make an application today.”
Have Your Say!
The Citizens’ Jury will sit virtually during the month of April for a series of two-hour sessions and, in recognition of their commitment, members will receive a €400 gratuity for their participation.
The jury’s work is being overseen by an oversight board comprising representatives of HIQA, Dublin City University, CareDoc, Rare Diseases Ireland, Health Research Charities Ireland, the Irish EUPATI National Platform, Trinity College Dublin and the Irish Universities Association.
To be a member of the Citizens’ Jury, applicants must be aged 18 years and above, and resident in Ireland. The successful applicants will be selected based on criteria that reflects a broadly representative cross-section of the Irish population.
For full information and to make application, click here before the closing date of Sunday January 31, 2021.
About IPPOSI
IPPOSI – the Irish Platform for Patient Organisations, Science and Industry – is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of health innovation.
Its focus includes rare diseases, clinical trials, health technology assessment, health information, digital health, and any other topic that promotes patient understanding and patient involvement in the treatment and decision-making processes that affect them.
Following more than 15 years of forging close links and alliances between patients, clinicians, scientists, industry, regulators and policy-makers, IPPOSI has been the primary contact and conduit for patients interested in engaging more actively in the R&D process.
IPPOSI is also recognised as a key partner in the overall development of health policy in Ireland. Its membership is open to all groups with an interest in healthcare and research and development, including representatives of patients, academia, science and the healthcare industry.