IPPOSI's Patient Education Programme Co-ordinator, Marie Boran, delivered this presentation at the HSE's Digital Academy on May 23rd 2019

1. May 23th, 2019
PATIENTS – SCIENCE – INDUSTRY
HSE Digital Academy
Marie Boran

2. HSE Digital Academy23/5/2019 www.ipposi.ie
Today’s Presentation
1. IPPOSI?
2. Patient Education in eHealth?
3. Proposed Modular approach

3. HSE Digital Academy23/5/2019 www.ipposi.ie
IPPOSI? Who?IPPOSI
A patient-led organisation
that works with patients,
government, industry,
& science to put patients at
the heart of health innovation

4. HSE Digital Academy23/5/2019 www.ipposi.ie
IPPOSI Members
22

5. HSE Digital Academy23/5/2019 www.ipposi.ie
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. HSE Digital Academy23/5/2019 www.ipposi.ie
Patient-led activities

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Patient Data
THEME &
WORKPLAN for
2019
https://www.ipposi.ie
/our-work/health-
innovation/patient-
data/

8. HSE Digital Academy23/5/2019 www.ipposi.ie
Why educate patients in eHealth?
• Trustworthiness is vital….
• patients must believe that their data is secure and only used for the
purposes they consented to
• Patient involvement opportunities
• increasing importance for informed patient advocates to contribute
meaningfully to design, development and roll-out of eHealth solutions
in Ireland
• Equally….
• create the situation where patients are the drivers of their data,
ensuring it is utilised to improve their health

9. HSE Digital Academy23/5/2019 www.ipposi.ie
‘Patient Experts’ - applying the knowledge
IPPOSI encourages students to apply the knowledge and skills they acquire in three main areas:
• Patient Representatives:
• Actively engage in representing a patient perspective in health innovation by interacting with
health/scientific committees, state agencies, regulatory bodies, industry, academia and other stakeholders
in Ireland and at the EU level.
• Patient Communicators/Journalists:
• Contributing to raising awareness on patient involvement in health innovation amongst their communities,
including patients whose voices are seldom heard, and the lay public.
• E.g. writing articles / press releases; facilitating cooperation with the media; being a spokesperson on TV /
Radio programmes; utilising social networks and blogs.
• Patient Educators/Train-the-trainers:
• Play facilitation / training roles by supporting the dissemination of patient education and information
programmes for other patient communities and the general public through their patient networks.
• E.g. providing training to patient advocates; leading workshops; running information sessions for people
interested in participating in eHealth.
PATIENT-FOCUSED MODULE GRADUATES TO PLAY ROLES IN HSE DIGITAL ACAEMY MASTERS
CURRICULUM/FACULTY

10. Development
of Electronic
Health
Records
(10 years)
National Education / Training on EHRs
For clinicians, nurses and Patients
By clinicians, nurses and Patients
Capacity Building / Empowerment of patients
Link to self-management programmes
OPPORTUNITIES FOR PATIENT INVOLVEMENT TO ADDRESS THE FOLLOWING CHALLENGES
EHR Design + Roll-out
Patient Portal
Other building blocks
Decision-making boards
Promoting Partnerships
Communication
Openness & Transparency
Advocating for essential building blocks
Real-Time information
Informed Consent
Bi-directional flow of information
Tracking patient outcomes
Public Trust + Confidence
Who, When, Why?
Consent – How?
Special Considerations for individual groups
Data Linkage & Sharing
Trust
Patient Experience
Education and Training
Collaboration
Communication
Timing
Sharing
Community
Access
Consent
Data Quality

11. HSE Digital Academy23/5/2019 www.ipposi.ie
IPPOSI & The European Patients Academy
• EUPATI produces Expert Patients on
Medicines Research & Development
• Provides Training & Education
• Disseminates through national platforms
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.
www.eupati.eu

12. HSE Digital Academy23/5/2019 www.ipposi.ie
Roles change 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 are increasingly taking leadership roles and are engaging with
pharma, regulators and HTA bodies.
Role changes also imply identity shifts.

13. HSE Digital Academy23/5/2019 www.ipposi.ie
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’

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HRB, HSE, DoH
public funding

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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

16. HSE Digital Academy23/5/2019 www.ipposi.ie
Developing Content + Curriculum
Module Educational Partner
/ Provider
Current module
1. Clinical Trials University College
Dublin
10 weeks
2. Regulatory Affairs, Medicines
Safety, Pharmacovigilance,
Pharmacoepidemiology
Health Products
Regulatory
Authority
10 weeks
3. Health Technology Assessment Trinity College
Dublin + NCPE
10 weeks
• No direct funding for education partners
• Each Module has a number of half-day face-to-face workshops
• Ed. Partners create + provide expert online support for weekly tasks
(2 hours per week for duration of module)

17. HSE Digital Academy23/5/2019 www.ipposi.ie
eLearning Platform LMS (Moodle) –
www.patientsinvolved.ie

18. Selection Criteria & Procedure
Criteria applicants obliged to meet:
• Commitment to complete the programme
• Application of skills acquired to increase patient
representation, communication or facilitate
knowledge and education in others
• Basic experience/knowledge of medicines
research and development
• Working knowledge of English
• High-speed Internet connection
Criteria weighted by selection
panel:
• Individual motivation
• Commitment to use and apply learning
• Experience related to the three module
areas for applying the acquired
knowledge/skills
• County of residence in the Republic of
Ireland
• Disease area

19. HSE Digital Academy23/5/2019 www.ipposi.ie
Student Feedback –
most valuable aspect?
The empowerment that the course provides cannot be
underestimated. At the end of the course I felt that my
knowledge of an area that I have worked in for many years has
been enriched and I would gladly have accepted even greater
detail in the course content.
Being introduced to the world of patient advocacy in
Ireland and EU and giving me a confidence that this
is an area that I can be a part of and make changes.
The commitment given by all those
preparing the material for the course
was much more than I could possibly
expect. I felt very privileged at the
attention to detail and need to make
sure we were getting the best from the
course and understanding all the
segments. HPRA input gives me the
confidence to understand the way the
system works in Ireland, I understand
their website and feel confident that I
can contribute information / use it in the
future.
The tutors that were made available. To have that quality of
expertise available to us was exceptional.

20. HSE Digital Academy23/5/2019 www.ipposi.ie
In-kind contributions for creating, delivering the programme
Role Responsible Partner
Developing Proposal, Guidelines for applicants / education partners, Student handbooks IPPOSI
Fundraising + handling contracts, relationship management IPPOSI
Application process management IPPOSI
Review Panel Coordination + Applicant Selection IPPOSI +
Volunteer Review Panel
Coordination between Ed. Partners (drafting of MoUs, briefings, guidance) IPPOSI
Hosting + Running of Face-to-face workshops - venue hire, catering, delivery of training Education Partners
Creation of content, uploading to website, mentoring of participants online Education Partners
Assessment of student performance + Evaluation of programme/module IPPOSI + Education Partners

21. Thank you!
@IPPOSI
www.ipposi.ie
education@ipposi.ie