Citizens' jury to debate health information...

How should your information be used?
  • Deborah Condon

How do you feel about your health information being viewed, shared or used by others? Members of the public who have something to say about this are being encouraged to consider joining a citizens' jury, which will deliberate the complex topic of access to health information.

A new campaign has been launched nationwide, which aims to identify 25 members of the public to take part. It has been developed by the Irish Platform for Patients' Organisations, Society and Industry (IPPOSI).

This is a patient-led organisation that works with patients, government, industry, science and academia in an effort to put patients at the heart of health policy and innovation.

"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 be 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," explained IPPOSI chief executive, Dr Derick Mitchell.

The jury will deliberate on issues around access to information in an attempt to arrive at a consensus. Its recommendations will then be delivered to the Government "in the context of the development of new health information legislation and the creation of a national electronic health record".

Dr Mitchell pointed out that there can be "strongly-held views" on both sides of this issue, therefore the aim of the citizens' jury is to assemble a group of people who are broadly representative of the Irish population.

"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 Mitchell said.

According to Dr Jane Suiter of Dublin City University (DCU), who is a member of the citizens' jury oversight board, these 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 views 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," she commented.

The citizens' jury will sit virtually during the month of April for a series of two-hour sessions. In recognition of their commitment, members will receive a €400 gratuity for their participation.

The jury's work will be overseen by an oversight board comprising of representatives from a number of relevant bodies, such as the Health Information and Quality Authority (HIQA), DCU, Trinity College Dublin, CareDoc, Rare Diseases Ireland and Health Research Charities Ireland.

Those interested in applying must be aged 18 years or over, and be resident in Ireland. The successful applicants will be selected based on criteria that reflects a broadly representative cross section of the Irish population.

For more information or to apply, click on www.ipposi.ie/citizensjury. The closing date for applications is January 31.

 

 

 


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