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2022 IPPOSI Industry Round Table Presentation
1. Welcome to the IPPOSI Round Table of Companies
June 16th 2022
2.
3.
4. EDUCATE INVOLVE IMPACT
IPPOSI Pillars
Creating ‘spaces’ where patients and the public are equal partners
IPPOSI Pillars
5. Types of ‘Spaces’
• Citizen Juries
• Digital Discussions + Conferences
• Patient ‘Dragon’s Den’
• Matchmaking of patient
advocates with PPI opportunities
• Patient Education Programme +
‘Patients as Educators’
Priority Areas
• Access to Innovation
• Patient/Public Involvement
• Health Data
6. The Future Use of Genomics
Jennifer Moran
Citizens’ Jury Coordinator
Health Data Priority Area
7. Citizens’ Jury 2021 – Access to Health Information
- Presentation to Slaintecare (July)
- Presentation to the HRB (Sept)
- Dissemination to DoH, HSE, HIQA etc.
- Report on patient perspective (Nov)
- References to Citizens’ Jury (Citizens’
Assembly, HIQA Advisory Group report,
eHealth Ireland, Oireachtas spotlight)
- Joint Focus Group with HIQA with jurors
(Dec)
IMPACT
July
2021+
8. Citizens’ Jury 2022 – Future Use of Genomics
- Multi-stakeholder Oversight Panel
- Over 500 expressions of interest
- Strong media coverage (radio,
newspapers, social media)
- CSO-representative juror selection
- 1 visually impaired juror
- 3 unsolicited requests to address jury
- 3 mission questions
- 4 Jury case studies
- 1 witness briefing
- IPPOSI, RDI, ICS letter proposing
juror join Steering Group on Genetics
and Genomics
PHASE ONE
(Jan-May+)
Funded by IPPOSI Reserves, unrestricted grants from
Roche Ireland, Pfizer Ireland, Irish Society of Human Genetics
9. Citizens’ Jury 2022 – Future Use of Genomics
- 1 juror information booklet
- 1 pre-jury information session
- Full jury attendance on day 1
- 1 main facilitator (Dave Dunn)
- 5 small group facilitators
- 1 rapporteur (June Shannon)
- 5 IPPOSI scribes
- 4 juror session summaries
- 1 Face-to-face in progress for 25
June
Pre-survey
Post-survey
Poll
Poll
Poll
Poll
Poll
Poll
Poll
Poll
Poll
PHASE TWO
(May-June)
Mid- survey
10. RCSI Deliberative Dialogues (Sept 2022+)
• HRB-funded - organised by the RCSI University’s Public Patient
Involvement (PPI) Office
• In-depth discussion of citizens’ jury verdict via a series of follow-on
workshops with diverse population-based groups
11. Citizens’ Jury 2 – Future Use of Genomics (2022)
- RCSI Deliberative Dialogues
- 1 presentation to National Steering
Group
- 1 presentation to the Joint
Committee and health-interested
politicians
- 1 presentation to the DoH
- Selection of video clips from jurors
- 1 briefing paper for policy-makers
- 1 toolkit for patient organisations
- 1 media information pack
- 1 parliamentary question on
genomics
- 1 budget pre-submission on
IMPACT
(Sept+)
- 1 jury verdict report co-authored by
jury committee with rapporteur
- 1 report on patient perspective on
the future use of genomics (member
survey and discussion)
- IPPOSI observations of the jury
process and comments on the jury
verdict
- Juror experience surveys and
interviews (material for
communications)
- Selection of juror delegation to
attend events and speak to media
- IPPOSI public speaking/media
PHASE
THREE
(July-Sept)
13. COVID-19
Access to vaccines
and boosters
Allocation of new
COVID-19 treatments
Informal coalition of patient organisations
Letters to the Minister, NIAC and HSE
Identification of patient and public
involvement roles
Participation in COVID network
14. Access to innovation
Access to medicines, including
rare disease medicines
Genetics and genomics policy
EU policy
Advocacy around DoH/IPHA agreement
Participation in multi-stakeholder dialogue
around rare disease medicines with
Minister and DoH
Outreach to HSE National Genetics and
Genomics Steering Group
Responses to EU consultations
15. Patient & Public Involvement
Laura Kavanagh,
Research & Advocacy Manager
16. IPPOSI PPI HUB
Launched website with cases in
October 2021
Published report on findings from
mapping
Plan to survey patient and provider
experience of involvement
17. PPI in the health service
IPPOSI is Vice-Chair of the National Patients’
Forum since January 2022, for two years
Monitoring work initiated in DoH in 2019 to
develop a public partners policy
Monitoring work initiated within HSE in
2019 to develop a PPI roadmap
Monitoring work initiated in 2022 to
develop a co-design approach
What can we realistically and
practically do?
Where are the opportunities?
What can we learn from others?
How can we design PPI that works
for the patient?
18. What can we do together around IPPOSI priority areas
(health data, innovation, PPI)?
CAPTURE ATTITUDES: Learn more about the patient perspective on key issues, invite a
discussion where there is no clear (or no known) perspective on an issue
CHAMPION PPI: Advocate for patient voices to be represented at important tables, both
internally (in companies, in IPHA) and externally (in spaces where there is dialogue between
state agencies and industry, when appropriate)
FOCUS ON EVIDENCE-BASED APPROACHES: Call for more investment and infrastructure
around health information, to facilitate better real-world data collection and outcomes
monitoring
19. Patient Education +
Irish EUPATI National Platform
Dr. Caroline Whelan
Education & Outreach Coordinator
20. Why Patient Education
& Training?
Patient & Public Involvement (PPI) is gaining
momentum in Ireland & is of increasing relevance
to many health stakeholders
Impact of patient education in R&D (IPPOSI /
EUPATI) evident in ability of graduates to work
effectively with partners, agencies, authorities
e.g. IPPOSI Matchmaking Patient Advocates
with PPI Opportunities
IPPOSI graduates moving from 'educated patients'
to 'educators/mentors’
e.g. PEP2021 Peer Mentors & Patient Dragons Den
with UL & RSCI
Patient Education Programme Graduation
March 7th, 2021
21. Re-imagining the IPPOSI
Patient Education offering
IPPOSI Patient Education
2017, 2019, 2021 IPPOSI programmes
• 3 Modules:
• Clinical Trials
• Regulatory Affairs
• Health Technology Assessment
• Partners: UCD, TCD, HPRA, NCPE
• 11-months e-learning & peer-to-peer
networking
https://www.ipposi.ie/our-work/education/patient-education-programme
Future 2023 IPPOSI programme
• Refine existing content
• Develop new topics – Research Ethics in Ireland
• And new approaches – hybrid in 2023
Work with
• IPPOSI Education & Training Advisory Board;
• Academic/Regulatory Partners;
• Projects – CHAMELEONS & PPI Ignite;
• EUPATI & its fellows, IPPOSI graduates, Irish ENP
& others
Next call for applications
Autumn 2022!
22. IPPOSI Patient Capacity Building Programme 2021-2023
Technical Workshop Topics
• Social Media - Twitter & LinkedIn
• Social Media - Facebook for Charities
• E-Advocacy: Creating an effective
Strategy for social media campaigns
• Comms for Political & Public Affairs
• Basic Podcasting
• Make better podcasts, Sept. 2022
Substantive Workshop Topics
• Making a patient submission to
the National Centre for
Pharmaco-economics (NCPE),
Autumn 2022
From Pilot to Programme!
23. EUPATI National Platform
in Ireland
• 70 members (patient, science,
industry)
• 50 graduates of IPPOSI Patient
Education Programme
• A growing community of patients
to engage with partners, agencies,
authorities
https://ppihub.ipposi.ie/
• CASES - Explore examples of PPI from across
Ireland. Please contribute!
• PARTNERS - Connect with partners from the
patient community. See their profiles.
• RESOURCES – Latest news on PPI
24. Join Irish EUPATI National Platform
Engage with IPPOSI Matchmaking
Get involved in Patient Education
What can we
do together?
25. BREAK
Next up - ‘Educate, Involve, Impact - the role of IPPOSI in health innovation'
30. There’s a lot happening in the digital
health / health information space in
Ireland and in Europe:
What is important for IPPOSI members?
What our (joint) response(s) should be?
31. What are the key developments?
DoH health information legislation (autumn 2022)
HIQA health information policy considerations (‘consent model’ plus)
NCH implementation of electronic health record (and portal)
DoH/HSE refresh of the eHealth Strategy (autumn 2022)
Slaintecare implementation (objective 10)
EU Health Data Space (2030 commitment)
WHICH
developments are
most importance
for IPPOSI
members, and
WHY?
WHAT can
we do
together?
32. Health information bill (DoH)
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”
AUTUMN 2022
33. What is the likely direction of travel?
Ireland is likely to focus on achieving a smaller number of bigger
projects in the coming years
Irish policy is likely to mirror European policy -summary care
records and e-prescribing
The Regional Health Area (RHA) agenda is likely to influence digital
health
Cybersecurity is likely to be a priority.
34. EU Health Data Space
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
35. What can we be doing?
• Raising awareness of the
benefits of health information
among our members and the
public
• Communicating patient (and
public) expectations around
access and control, as well as
use
• Calling for patient (and public)
roles in strategy, governance,
oversight, and better
engagement approaches
MEMBERS
Advise strategy
Disseminate
Advocate
IPPOSI
Draft materials
Coordinate
Advocate
PUBLIC
Share stories
Champion
Advocate
Terminology; briefing notes,
factsheets, case studies; FAQs; patient
stories ; thought leader blogs; citizen
jurors verdicts
Position papers (on right to access);
proposals (on portal functionality);
dialogue (on stakeholder consensus)
Advocate for public representation;
transparent selection; supports and
training; public consultation tools
Hinweis der Redaktion
KOL in PPI across research, policy, services and innovation.
We educate & train patients to provide their input in an informed, evidenced way
We are passionate about preparing researchers and healthcare professionals to develop partnerships with patients
Action packed / engaging / left wanting more
6 sessions
2 hours each – 12 hours in total
2 witnesses at each of first four sessions:
Last 2 sessions for deliberations and voting
Facilitated by Michael
Supported by co-facilitators
Observed by rapporteur
Observed by dcu and bias sub-group
Allow some witnesses to be selected by jurors
Make some sessions face to face
Worry less about keeping to two hours
Action packed / engaging / left wanting more
6 sessions
2 hours each – 12 hours in total
2 witnesses at each of first four sessions:
Last 2 sessions for deliberations and voting
Facilitated by Michael
Supported by co-facilitators
Observed by rapporteur
Observed by dcu and bias sub-group
Allow some witnesses to be selected by jurors
Make some sessions face to face
Worry less about keeping to two hours
rare diseases and children in July 2021, on general pharmaceutical legislation in Dec 2021, on European Health Data Space in Dec 2021 & July 2022
80+ cases of public or patient involvement, 40+ organisations, institutions, companies, 20+ public partner profiles from the IPPOSI patient education programme alumni
10 opportunities by 4 companies, PPI activity at the global level is not mirrored at the national level
Need to identify entry points
Engage in cross-company dialogue
Create the conditions for involvement
What can we realistically and practically do?
Where are the opportunities?
What can we learn from others?
How can we design PPI that works for the patient? Co-design the process
- Work out what we can offer.
- Get the conversation started. Learn from others who are doing PPI if we can
- Invite patients into the conversation so that we design PPI in a way that is patient-friendly/apprioriate from the start
If there are particular areas where you think a patient voice should be present, but is not, then we would like to hear from you. We have a community of patients who have completed our education programme and they are keen to share their perspectives. We sometimes don’t hear about the opportunities until it is too late.
In light of COVID, we all have a joint responsibility to push for greater digital infrastructure. We have seen how important it is to the functioning of a modern health system. But change/transition is slow. It helps if as many stakeholders as possible are sharing the same message. We can all benefit from greater digital infrastructure.
Equally, if there are topics where you think a collective patient perspective does not currently exist, but would be valuable, then again, please feel free to get in touch. In the past, we have convened roundtables around a range of topics for our 100+ patient member organisations.
If there are particular areas where you think a patient voice should be present, but is not, then we would like to hear from you. We have a community of patients who have completed our education programme and they are keen to share their perspectives. We sometimes don’t hear about the opportunities until it is too late.
In light of COVID, we all have a joint responsibility to push for greater digital infrastructure. We have seen how important it is to the functioning of a modern health system. But change/transition is slow. It helps if as many stakeholders as possible are sharing the same message. We can all benefit from greater digital infrastructure.
Equally, if there are topics where you think a collective patient perspective does not currently exist, but would be valuable, then again, please feel free to get in touch. In the past, we have convened roundtables around a range of topics for our 100+ patient member organisations.
15 mins ‘ 1130’1145
Our goal today is to answer these two questions.
HIQA = four pillars: engagement, legislation, governance, technical and operational capacity, IPPOSI on advisory board and we will respond to consultation
NCH = business case approved, work started in advance of 2024 opening, just under two years to deliver, digital health team in contact with IPPOSI and we will feedback on PPI strategy for digital health
eHealth strategy = needs a refresh, in touch with Health infrastructure team in DoH and we will feedback on draft strategy during consultation period
Proposal for a regulation around the health data space, we will be submitting a response to the open consultation
Community patients’ management system
Establish a “Data sharing” principle
Review IHI, and move to PPSN as the key identifier from the public side, the IHI will be used from the system side. People will be asked for PPSN to be identified by the system.
Important that guardian is supported by a public panel
Important that there are public and patient voices in the governance structures of the centre
Important that individuals-citizens are offered better rights to their information than FOI or DPA
TEDHAS What is secondary use? What is (pseudo) anonymisation? What is the best legal framework? How does this fit with GDPR? How do we operationalise our vision? What is quality data? How should citizens be involved?
DIGITAL COMPASS – describes the Commission´s vision for digital transformation – government-public services, skills, business, infrastructures
better exchange and access to different types of health data (genomics data, data from patient registries, electronic health records, etc.)
NOTE: Following the Ordinary Legislative Procedure (OLP), the EHDS proposal will now be sent to and discussed by the European Parliament and the Council, EUCOPE will follow closely the legislative debate and engage with relevant stakeholders in the process. Regarding the Parliament, it is expected that ENVI, ITRE or IMCO will obtain the file, while the Council Configuration is most likely to be taken up by either EPSCO or TTE.