The value of Patient Data – #DATA SAVES LIVES
IPPOSI maintains that it is the responsibility of the Dept. of Health and the Irish health service to ensure that Irish patients have confidence in how their personal health data is collected, stored and used
In 2019, IPPOSI is prioritising Patient Data
Member Survey
on patient data in Ireland
A survey of IPPOSI membership was conducted in March 2019.
Results of the survey are displayed here, or can be downloaded by clicking here (.pptx – 1Mb)
actions in 2019
Member Survey
PrioritisingPrioritising
A member survey has identified our 2019 patient data priorities and will help establish our advocacy strategy. Click here to view survey results (.pptx file – 1Mb size)
Citizen Jury
Public perspectivesPublic perspectives
IPPOSI has developed a Citizen Jury initiative to engage the Irish general public on ‘tricky’ health topics related to patient data. A citizen jury began in 2020 under the topic of ‘access to health information’. Click here to find out more.
Annual Conference
Coming togetherMulti-stakeholder
A multi-stakeholder IPPOSI conference on October 7th, 2019 will continue the national dialogue around patient data, with particular focus on ‘Electronic Health Records’, with discussions between patients, academia, industry, regulators and government representatives.
Patient education
TrainingTraining
The IPPOSI-led patient education programme in Health Innovation in Ireland is continuing in 2019. As part of the 2019 programme, IPPOSI will explore the development of new content related to eHealth / Patient Data, in partnership with a number of relevant education partners in Ireland.
Play:Decide
DiscussingDiscussing
In 2019, IPPOSI designed an interactive discussion card game on the challenge of accessing and sharing patient data in Ireland. The entire game is available online by clicking here.
Global Perspectives
Campaigning#datasaveslives
IPPOSI has joined the European Patients Forum-led initiative called #datasaveslives. This public information resource will provide international perspectives on patient data, cross-border sharing, GDPR, among other case studies. Find out more
Patient Charter
2018 ThemeGuiding Principles
Multi-stakeholder
We believe that health stakeholders in Ireland should work together in partnership for the benefit of patients. Patient Data is a frequent topic of discussion in our patient-led, multi-stakeholder platform which facilitates dialogue between patients, science and industry. Our members call for a national conversation to align patient expectations with the current national strategy.
consensus-led
We believe that health solutions should be arrived at by consensus. IPPOSI is ideally placed to identify where our member interests align and what common objectives can be pursued. Concerns around the national strategy which informs ehealth/digital health in Ireland are universally shared, and our members call for a transparent, sustainable and equitable approach.
Patient-centred
We believe that decisions should not be made on behalf of patients but with patients. IPPOSI is an advocate for patients as partners and for patient involvement in decision-making. Patients are solution-oriented, and our members call for an engagement framework to be developed whereby patient voices can be heard and acted upon at multiple timepoints in the design and dvelopment of ehealth / Digital health in Ireland.
Previous IPPOSI activity
The area of health information/patient data/eHealth has been a priority area for IPPOSI for the past seven years, where we have led the debate, highlighted key challenges and proposed solutions through a number of multi-stakeholder initiatives. More recently IPPOSI haved worked with eHealth Ireland on the Individual Health Identifier, the National Electronic Health Record. IPPOSI CEO Derick Mitchell is also an ongoing member of the eHealth Ireland Committee.
