2022 IPPOSI Industry Round Table Presentation
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Presentation slides from IPPOSI staff as part of the 2022 Industry Round Table
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2022 IPPOSI Industry Round Table Presentation
- 1. Welcome to the IPPOSI Round Table of Companies June 16th 2022
- 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)
- 12. Access to Innovation Laura Kavanagh Research & Advocacy Manager
- 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'
- 26. Public and Patient Involvement training Dr. Caroline Whelan Education & Outreach Coordinator
- 27. Industry Roundtable PPI Questionnaire 4464 7179 https://www.menti.com/mv7jus6fwn 65 83 578 4464 7179
- 28. Digital Health & Health information Laura Kavanagh Research & Advocacy Manager
- 29. Health Information Questionnaire 2097 6389 https://www.menti.com/jmhypwcu4v 65 83 578 2097 6389
- 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
Editor's Notes
- 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.