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PATIENTS – SCIENCE – INDUSTRY
Dr Derick Mitchell
Oct 25th, 2019
Alpha-1 Ireland Conference
IPPOSI? Who?
IPPOSI
A patient-led organisation
that works with patients,
government, industry,
& science to put patients at
the heart of health innovation
Priorities
22
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
PATIENT ORGANISATIONS
SCIENCE
INDUSTRY
Public Private Partnership
IPPOSI Board
8 Patient Organisations
6 Scientific Members
6 Industry Members
50:50 Public : Private
Public:
• Grant from Department of Health
• EU- & National-level grants
Private:
• Industry membership fee
• Industry member sponsorships
IPPOSI Funding
Patient-led activities
Health Hacks
Workshops
Consultations
Round-tables
Working Groups
Summer Schools
Conferences
Clinical Research
Integrated Care
Patient Data
Health Economics
Patient Registries
Dynamic Consent
Data Protection
Our Resources
INFORM ENGAGE EMPOWER
Patient Engagement / Involvement?
Equity in Irish
Heathcare?
• Irish health service internationally recognised as ‘complex’,
unfair, costly at the point of entry
• High inequalities, High unmet need, Very poor access,
Geographical lottery
• Behind EU average for public funding (79%, Ireland is 73%)*
• Lots of reform, little measurable impact
• Slaintecare Vision + Implementation
* Eurostat, 2019
Equity for Rare
Diseases?
Small patient populations, limited medical
expertise, most with no care pathway
‘Rare Diseases are not actually that Rare’
Centres of excellence required to coordinate
care regionally or nationally
Membership of ERNs: potential to gather more
data in a shorter period of time
Principled approaches to drug reimbursement
decision-making
What matters to patients?
• We want person-centred, coordinated healthcare
• people having control and influence in decisions that
affect their health and care
• We want people to be partners in
• the design of services
• research, innovation and improvement
• building real world effectiveness data
That the patient voice is listened to AND ACTED UPON
Why educate patients?
• Trustworthiness is vital….
• Patient involvement opportunities are
increasing
• Need informed advocates to contribute meaningfully to
design, development and roll-out of health services and
health innovation in Ireland
• Equally….create the situation where
• patients are the drivers of their own health data, ensuring
it is utilised to improve their health
• patient experience data moves up the hierarchy of
evidence in service design and innovation
Building a new Irish healthcare + research environment
In 2019, Patient Reps are full members of:
• HSE Board
• Many National Clinical Programmes
• Cancer Strategy Implementation
• HSE Drugs Committee
• Rare Disease Tech Review Committee
• Health Innovation Hub Steering Committee
• Ehealth Ireland Committee
• Health Research Board – PPI reviewers
• National Clinical Effectiveness Committee
• HSE National Patient Forum
What do patient advocates want re: medicines R&D?
• To be involved as early as possible in clinical research design, priority setting, policy
• To improve the quality of clinical research - less wastage
• To ensure better use/reuse of research outputs and tools
• To generate impact and burden data to support the results of the clinical trials
• To use online / ehealth / mobile health apps to generate patient-based evidence
Charter for Patient Involvement
• The collective vision of patients for greater
involvement in the medicines assessment
and reimbursement process in Ireland
• 36 Irish patient organisations signed
• EPF, EURORDIS and HTAi joined as friends
• Charter launched in February 2019
IPPOSI & The European Patients Academy
• EUPATI produces Expert Patients on
Medicines Research & Development
• Provides Training, Education at EU-level
• 20-member national platform network
www.eupati.eu
The project received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial
contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
Role changes as a result of EUPATI course
- creating patient leaders
Role Before EUPATI After
Member of patient organisation, not actively involved 17% 2%
Active role in a patient organisation 62% 71%
Leadership role in a patient organisation 62% 71%
Employee of a patient organisation 25% 23%
Volunteer role in a patient organisation 60% 67%
Presenting at conferences, workshops etc. 63% 83%
Advising a pharmaceutical company 13% 44%
Advising a regulatory agency 21% 42%
Advising a reimbursement agency 4% 8%
EUPATI Fellows increasingly taking leadership roles and are engaging with pharma,
regulators and HTA bodies. Role changes also imply identity shifts.
What does EUPATI offer?
Patient Expert Training Course
Toolbox
National Platforms
Stakeholder Patient Engagement Training
Matchmaking with EUPATI Fellows
Infrastructure for Patient Engagement
Region 3
Ireland
Norway
Belgium
UK
Luxembourg
Denmark
Finland
Sweden
The Netherlands
Region 2
Germany
Austria
Poland
Romania
Slovakia
Switzerland
Region 1
Portugal
Italy
France
Spain
Malta
Greece
Turkey
Cyprus
EUPATI International Network
Region 2
Germany
Austria
Poland
Romania
Slovakia
Switzerland
Region 2
Germany
Austria
Switzerland
Region 1
Portugal
Italy
France
Spain
Malta
Greece
Turkey
Cyprus
Slovakia
Region 3
Ireland
Norway
Belgium
UK
Luxembourg
Denmark
Finland
Sweden
Poland
Romania
The Netherlands
IPPOSI Patient Education Programme
in Health Innovation
10-month programme
Blended Learning – online + workshops
3 x 10-week modules
• Clinical Trials
• Regulatory Affairs
• Health Technology Assessment
Current Education Partners
UCD, TCD, HPRA, HIQA, NCPE
1 elearning website - www.patientsinvolved.ie
By end of 2019: 45 ‘graduates’
Three 10-week Modules – different approaches
MoU WITH UNIVERISTY
CLINICAL RESEARCH CENTRE
• Created 40 purposely
designed online lectures,
modifying pre-existing course
material. (University IP)
• Significant support from CRC
administration + School of
Medicine IT dept.
• Certificate of completion with
UCD + IPPOSI logo
NATIONAL REGULATOR
• Not a recognized
Education Body.
• Engaged 10+ staff in pre-
existing EUPATI content
• Generated Irish-specific
content.
• 1 staff member
coordinated efforts
• Communications support
• Certificate of completion
with HPRA + IPPOSI logo
MoU WITH UNIVERSITY
DEPT. + HTA AGENCIES
• Engaged senior TCD +
NCPE + HIQA staff in
pre-existing EUPATI
content
• Generated Irish-
specific content
• Certificate of
completion with NCPE
+ IPPOSI + HIQA logo
Expert Patients – applying the knowledge
• Patient Representatives
• to represent a patient perspective in health innovation processes by interacting with scientific
committees, HTA agencies, regulatory bodies, academia, relevant actors.
• Patient Communicators
• to contribute to raising awareness on patient involvement in health innovation amongst lay patients,
hard-to-reach patients and the lay public.
• Patient Facilitators/Trainers
• to become engaged in training activities supporting the dissemination of the education and
information programmes to patient communities, general public
From ‘educated’ to ‘involved’
• Graduate profiles on IPPOSI website
www.ipposi.ie/our-resources/patient-expert-
profiles-2
• Availing of pportunities in palliative care, HSE
board, EMA advisory, HPRA committees
• Generating media articles, patient group advocacy
etc.
• Internal Working Groups forming about
‘meaningful’ opportunities, fair market value for
involvement, and other topics
Patient Data
THEME &
WORKPLAN for
2019
https://www.ipposi.ie
/our-work/health-
innovation/patient-
data
https://www.ipposi.ie
/our-work/health-
innovation/access-to-
medicines
ANNUAL THEME
Patient Data
THEME &
WORKPLAN for
2019
https://www.ipposi.ie
/our-work/health-
innovation/patient-
data/
Access to Better
Data = More
Equity
Need comprehensive
collection of data to
create opportunities
to better coordinate
between public and
private systems,
primary, secondary,
tertiary settings
Current lack of
standardization and
recommendations at
the national level is
stifling progress
Create an
environment to begin
conversations about
how to coordinate
beyond data collection
only
Link data between
groups & silos to
better understand
disparities, and
facilitate new
analytical methods to
better investigate
strategies
https://www.ipposi.ie/2019/06/06/ip
posi-conference-agm-2019/
Take home messages
• When someone tells you that patients cannot understand or just do not
want to know, just look at the evidence…
• Patients are inherently innovative and willing to work in partnership
• relationship is fragile, dynamic, uncomfortable, ambitious, and goal-oriented
• Growing body of evidence that Patient & Public involvement is vital for
• reducing inequities
• improving data quality & sharing
• ensuring the overall quality of health care and health R&D
• improving health and wellbeing outcomes
Thank you!
@IPPOSI
www.ipposi.ie
dmitchell@ipposi.ie

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Alpha One Conference - IPPOSI

  • 1. PATIENTS – SCIENCE – INDUSTRY Dr Derick Mitchell Oct 25th, 2019 Alpha-1 Ireland Conference
  • 2. IPPOSI? Who? IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
  • 3. Priorities 22 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
  • 5. Public Private Partnership IPPOSI Board 8 Patient Organisations 6 Scientific Members 6 Industry Members 50:50 Public : Private Public: • Grant from Department of Health • EU- & National-level grants Private: • Industry membership fee • Industry member sponsorships IPPOSI Funding
  • 6. Patient-led activities Health Hacks Workshops Consultations Round-tables Working Groups Summer Schools Conferences Clinical Research Integrated Care Patient Data Health Economics Patient Registries Dynamic Consent Data Protection
  • 8. Patient Engagement / Involvement?
  • 9. Equity in Irish Heathcare? • Irish health service internationally recognised as ‘complex’, unfair, costly at the point of entry • High inequalities, High unmet need, Very poor access, Geographical lottery • Behind EU average for public funding (79%, Ireland is 73%)* • Lots of reform, little measurable impact • Slaintecare Vision + Implementation * Eurostat, 2019
  • 10. Equity for Rare Diseases? Small patient populations, limited medical expertise, most with no care pathway ‘Rare Diseases are not actually that Rare’ Centres of excellence required to coordinate care regionally or nationally Membership of ERNs: potential to gather more data in a shorter period of time Principled approaches to drug reimbursement decision-making
  • 11. What matters to patients? • We want person-centred, coordinated healthcare • people having control and influence in decisions that affect their health and care • We want people to be partners in • the design of services • research, innovation and improvement • building real world effectiveness data That the patient voice is listened to AND ACTED UPON
  • 12. Why educate patients? • Trustworthiness is vital…. • Patient involvement opportunities are increasing • Need informed advocates to contribute meaningfully to design, development and roll-out of health services and health innovation in Ireland • Equally….create the situation where • patients are the drivers of their own health data, ensuring it is utilised to improve their health • patient experience data moves up the hierarchy of evidence in service design and innovation
  • 13. Building a new Irish healthcare + research environment In 2019, Patient Reps are full members of: • HSE Board • Many National Clinical Programmes • Cancer Strategy Implementation • HSE Drugs Committee • Rare Disease Tech Review Committee • Health Innovation Hub Steering Committee • Ehealth Ireland Committee • Health Research Board – PPI reviewers • National Clinical Effectiveness Committee • HSE National Patient Forum
  • 14. What do patient advocates want re: medicines R&D? • To be involved as early as possible in clinical research design, priority setting, policy • To improve the quality of clinical research - less wastage • To ensure better use/reuse of research outputs and tools • To generate impact and burden data to support the results of the clinical trials • To use online / ehealth / mobile health apps to generate patient-based evidence
  • 15. Charter for Patient Involvement • The collective vision of patients for greater involvement in the medicines assessment and reimbursement process in Ireland • 36 Irish patient organisations signed • EPF, EURORDIS and HTAi joined as friends • Charter launched in February 2019
  • 16. IPPOSI & The European Patients Academy • EUPATI produces Expert Patients on Medicines Research & Development • Provides Training, Education at EU-level • 20-member national platform network www.eupati.eu The project received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
  • 17. Role changes as a result of EUPATI course - creating patient leaders Role Before EUPATI After Member of patient organisation, not actively involved 17% 2% Active role in a patient organisation 62% 71% Leadership role in a patient organisation 62% 71% Employee of a patient organisation 25% 23% Volunteer role in a patient organisation 60% 67% Presenting at conferences, workshops etc. 63% 83% Advising a pharmaceutical company 13% 44% Advising a regulatory agency 21% 42% Advising a reimbursement agency 4% 8% EUPATI Fellows increasingly taking leadership roles and are engaging with pharma, regulators and HTA bodies. Role changes also imply identity shifts.
  • 18. What does EUPATI offer? Patient Expert Training Course Toolbox National Platforms Stakeholder Patient Engagement Training Matchmaking with EUPATI Fellows Infrastructure for Patient Engagement
  • 19. Region 3 Ireland Norway Belgium UK Luxembourg Denmark Finland Sweden The Netherlands Region 2 Germany Austria Poland Romania Slovakia Switzerland Region 1 Portugal Italy France Spain Malta Greece Turkey Cyprus EUPATI International Network Region 2 Germany Austria Poland Romania Slovakia Switzerland Region 2 Germany Austria Switzerland Region 1 Portugal Italy France Spain Malta Greece Turkey Cyprus Slovakia Region 3 Ireland Norway Belgium UK Luxembourg Denmark Finland Sweden Poland Romania The Netherlands
  • 20. IPPOSI Patient Education Programme in Health Innovation 10-month programme Blended Learning – online + workshops 3 x 10-week modules • Clinical Trials • Regulatory Affairs • Health Technology Assessment Current Education Partners UCD, TCD, HPRA, HIQA, NCPE 1 elearning website - www.patientsinvolved.ie By end of 2019: 45 ‘graduates’
  • 21. Three 10-week Modules – different approaches MoU WITH UNIVERISTY CLINICAL RESEARCH CENTRE • Created 40 purposely designed online lectures, modifying pre-existing course material. (University IP) • Significant support from CRC administration + School of Medicine IT dept. • Certificate of completion with UCD + IPPOSI logo NATIONAL REGULATOR • Not a recognized Education Body. • Engaged 10+ staff in pre- existing EUPATI content • Generated Irish-specific content. • 1 staff member coordinated efforts • Communications support • Certificate of completion with HPRA + IPPOSI logo MoU WITH UNIVERSITY DEPT. + HTA AGENCIES • Engaged senior TCD + NCPE + HIQA staff in pre-existing EUPATI content • Generated Irish- specific content • Certificate of completion with NCPE + IPPOSI + HIQA logo
  • 22. Expert Patients – applying the knowledge • Patient Representatives • to represent a patient perspective in health innovation processes by interacting with scientific committees, HTA agencies, regulatory bodies, academia, relevant actors. • Patient Communicators • to contribute to raising awareness on patient involvement in health innovation amongst lay patients, hard-to-reach patients and the lay public. • Patient Facilitators/Trainers • to become engaged in training activities supporting the dissemination of the education and information programmes to patient communities, general public
  • 23. From ‘educated’ to ‘involved’ • Graduate profiles on IPPOSI website www.ipposi.ie/our-resources/patient-expert- profiles-2 • Availing of pportunities in palliative care, HSE board, EMA advisory, HPRA committees • Generating media articles, patient group advocacy etc. • Internal Working Groups forming about ‘meaningful’ opportunities, fair market value for involvement, and other topics
  • 24. Patient Data THEME & WORKPLAN for 2019 https://www.ipposi.ie /our-work/health- innovation/patient- data https://www.ipposi.ie /our-work/health- innovation/access-to- medicines ANNUAL THEME
  • 25. Patient Data THEME & WORKPLAN for 2019 https://www.ipposi.ie /our-work/health- innovation/patient- data/
  • 26. Access to Better Data = More Equity Need comprehensive collection of data to create opportunities to better coordinate between public and private systems, primary, secondary, tertiary settings Current lack of standardization and recommendations at the national level is stifling progress Create an environment to begin conversations about how to coordinate beyond data collection only Link data between groups & silos to better understand disparities, and facilitate new analytical methods to better investigate strategies
  • 28. Take home messages • When someone tells you that patients cannot understand or just do not want to know, just look at the evidence… • Patients are inherently innovative and willing to work in partnership • relationship is fragile, dynamic, uncomfortable, ambitious, and goal-oriented • Growing body of evidence that Patient & Public involvement is vital for • reducing inequities • improving data quality & sharing • ensuring the overall quality of health care and health R&D • improving health and wellbeing outcomes

Editor's Notes

  1. A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development. In pursuit of this we hold workshops, discussion groups, training days and conferences on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs.
  2. The perceived wisdom, just a few years ago, was that patient engagement was fraught with risk. It could, they argued, become too costly and bureaucratic without offering certain benefits in return.  Now, instead of contemplating the risk of doing patient engagement, growing numbers of decision-makers in medicines development are speaking of the risks of not doing patient engagement.  Behavioral science, patient engagement capacity, and real-world evidence support the evolution towards a new model that integrates patient engagement at all levels. Regulators are building expectations of patient input and how to generate it, so much so that we are approaching a tipping point where co-creation with patients is on the verge of becoming the default option throughout the system.  Momentum is behind the patient engagement community and we are now getting into the nuts and bolts of making PE work. Whether it’s the WECAN initiative on reasonable legal agreements between patient advocates and drug companies; forthcoming initiatives to determine the Fair Market Value of patient input; the EU-backed PARADIGM partnership; or the patient-centric focus of The Economist Intelligence Unit’s new report on the future of drug development, it is clear that PE is becoming internalised by the medicines development system. 
  3. Increase equity by reducing disparities Targeted, culturally-based interventions, involving patients have proved to improve outcomes at local level
  4. Evidence to support evidence-based practice will not exist.
  5. as patients, carers and members of communities building real world effectiveness data – for example - following a decision of conditional reimbursement, incorporating patient relevant outcomes.
  6. Health services in Ireland are including patient voices in decision making to a greater extent now than ever before. The HSE’s National Strategy for Service User Involvement 2008-2013, the National Patients Forum, the National Patient Experience Survey and the IPPOSI-led Patient Narrative project are examples. Furthermore, the Department of Health is working with IPPOSI and other relevant patient-led organisations in areas such as rare diseases, dementia and others. Training required to get the expertise required to contribute to research & development projects Listening exercise – first time we had patients identifying their needs, and communicating back to HCPs Response rate of 51% shows the willingness to have patient voices heard Majority of patients have confidence in the HCPs that treat them 83% of patients were treated with dignity and respect 96% of patents felt that their hospital ward was clean Journey into the hospital is not as good, hard to recover Issues with discharge – 40% had a bad experience – a lot based on communications and information – can be fixed
  7. building real world effectiveness data – for example - following a decision of conditional reimbursement, incorporating patient relevant outcomes.
  8. Launched February 2012 as a public private partnership, 33 consortium members, Funded by Innovative Medicines Initiative Has developed and disseminated objective, credible, correct and up-to-date public knowledge about medicines R&D Is building competencies & expert capacity among patients and the public A driver of patient engagement in R&D Continues as a permanent educational program led by the EPF in an independent PPP
  9. Digital Health can be a critical enabler of best-practice health systems and optimal healthcare delivery. The availability of high quality, accurate and timely health information is fundamental to enhanced patient—clinician relationships, and to improved health outcomes experienced by patients. However Digital Health is not just about IT alone but about identifying new ways of solving healthcare problems, creating better experiences for patients and efficiencies for healthcare organisations. Transformational leadership is also necessary to ensure change is sustainable, measurable and creates positive benefits for patients, for those working to deliver healthcare, and for health systems as a whole.
  10. Digital Health can be a critical enabler of best-practice health systems and optimal healthcare delivery. The availability of high quality, accurate and timely health information is fundamental to enhanced patient—clinician relationships, and to improved health outcomes experienced by patients. However Digital Health is not just about IT alone but about identifying new ways of solving healthcare problems, creating better experiences for patients and efficiencies for healthcare organisations. Transformational leadership is also necessary to ensure change is sustainable, measurable and creates positive benefits for patients, for those working to deliver healthcare, and for health systems as a whole.
  11. Use of novel techniques, such as geospatial analysis, will also allow investigation into topics shown to be important but difficult to explore such as residential segregation, neighborhood socioecnoomic status, access to healthy foods, and other regionally important factors.