Help decisions on health information

THE Irish Platform for Patients’ Organisations, Science & Industry is looking for members of the public to volunteer for a new Citizens’ Jury that will helo decide how health information is stored and shared.

The body is seeking 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.

Following careful deliberation by the jury, the aim is to arrive at a consensus on the issues raised, with recommendations to be delivered to the Government i n order to ease the development of new health i nformation 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.’

He says: ‘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.

‘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?’

Dr Jane Suiter, Associate Professor at Dublin City University, says the process has worked with the Citizen’s Assembly.

‘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.

‘The Citizens’ Jury will sit virtually during the month of April f or a s eries of t wo- 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 a 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 crosssection of the Irish population.

For full information and to make application, visit ipposi.ie/citizensjury before the closing date of Sunday January 31, 2021.