Laura Kavanagh, Research and Advocacy Manager in IPPOSI, gave a presentation on World Brain Day 2022 at an event hosted by the Neurological Alliance of Ireland.

1. Who are IPPOSI?
We are a patient-led
organisation that
works with patients,
science & industry to
put patients at the
heart of health
innovation.
www.ipposi.ie
info@ipposi.ie
@IPPOSI

2. What do we do, and how?
• Digital discussions
• In-person conferences
• Training programmes
• Matchmaking
• Member resources
• Coalitions and networks
• Citizens’ juries
EDUCATION ADVOCACY INFORMATION

3. We have three priority areas

4. 4
Digital health and health data is first and foremost about people
Digital health includes health data, and health data is patient data
With their consent, patients hold the key to unlocking our digital health future
Patients must be partners in co-creating our digital health future
IPPOSI and digital health & health information

5. 5
IPPOSI and health information
Health information must be collected, shared and used in a digital format, and in an interoperable and
standardised way
Health information must be readily accessible (in full) to the individual to whom it relates i.e. the
patient or service user
Health information should be used for primary (care) and secondary purposes (service management,
policy, research, and innovation), with appropriate restrictions and safeguards in place
Health information should be shared and used based on individual preferences, and ideally, with the
involvement of the individual

6. What are the key developments?
What is important
for Irish patients?
Where can we take
joint action to have
an impact?
DoH health
information bill
(autumn 2022)
HIQA health
information policy
considerations
NCH electronic
health record (and
portal)
DoH/HSE revised
eHealth Strategy
(autumn 2022)
Slaintecare plan
implementation
(objective 10)
EU Health Data
Space vision (2030
commitment)
(Legislation, regulation, policy)

7. The Health Information Bill AUTUMN 2022
National health
information
guardian
National health
information
centre
Rights-based
approach
fit-for-purpose national health
information system”
“empowers our frontline health staff to
share information for patient care”
“information follows the patient”
“increase in the availability of data for
research purposes”
“legislation is a stepping stone, not the
destination”

8. What’s happening at the EU level?
European Data Space is one of the priorities of the European Commission 2019-
2025. A European Health Data Space (EHDS) is one of several data spaces.
Joint Action Towards the European Health Data Space (TEDHAS) established in
2021 https://tehdas.eu/
European Commission proposal for a regulation on the Health Data Space (public
consultation ongoing)
Three objectives to improve cross-border care; unlock potential of EU-wide data;
and support research and innovation
European Digital and Health Data Board to be established, with patient
representation
€810million in funding to build the necessary infrastructure
EU DIGITAL DECADE
DIGITAL COMPASS
All individuals living in
the EU will have access
to their own health
information (medical
records) by 2030

9. 9
What can we do?
1. Raise our own awareness by attending training and education days on digital
health issues
2. Create spaces for others to chat about the benefit of digital health
• In-person or online
3. Share accessible informative resources with our personal and professional
networks
• IPPOSI, Understanding Patient Data, Data Saves Lives, OECD, EUPATI etc.
4. Formally communicate citizen and patient needs and expectations for digital
health
• Link up with other likeminded organisations
• Publicise your positions
• Respond to public consultations
5. Remember to always emphasis the need for public and patient involvement in
building our digital health future

10. www.ipposi.ie
info@ipposi.ie
@ipposi