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

Prioritising

Prioritising

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 perspectives

Public perspectives

IPPOSI has developed a proposal to implement a Citizen Jury initiative.  We are exploring a number of funding options to pilot this process as a tool to engage the Irish general public on ‘tricky’ health topics related to patient data.

Annual Conference

Coming together

Multi-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. SAVE THE DATE.

Patient education

Training

Training

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.

Knowledge Hub

Sign-posting

Sign-posting

A new, online information resource will keep members up-to-date with relevant health legislation and policy changes both in Ireland and Europe. Two topics will be chosen in the area of Patient Data, to focus on during 2019. The Hub is being piloted on the topic of Health Technology Assessment (launching soon).

Global Perspectives

Campaigning

#datasaveslives

IPPOSI has joined the European Patients Forum-led initiative called #datasaveslives. This public information campaign will provide international perspectives on patient data, cross-border sharing, GDPR, among other case studies. The campaign will soft launch in June with a full launch in Q3 2019.

Drug Iceberg Report

2018 Theme

The trilogy

As part of our 2018 theme, a third version of the “Drug Iceberg” report (versions 1.0 and 2.0 published in 2017 & 2018) will continue to explore Irish access to medicine challenges in greater detail and chart progress against the report recommendations (to be completed in partnership with the MRCG).

Guiding 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.

OUR WORK IN EHEALTH