The document discusses the importance of patient involvement in health research and innovation, highlighting the role of organizations like IPPOSI in advocating for patient access and meaningful participation. It outlines key actions to enhance patient engagement in research design, regulatory affairs, and health technology assessments, while also emphasizing the shift in leadership roles among patient advocates. Additionally, it addresses the need for education and support for both patients and researchers to improve research quality and foster collaboration.

1. PATIENTS – SCIENCE – INDUSTRY
March 7th, 2017
Derick Mitchell, PhD

2. May you live in changing times….

3. Patient‘s organisations have
unique insights in “real life“
and “real needs“ of patients:
Clinical Research Design
Priority Setting
Research Policy
Building a new environment for research
3

4. In a changing system - the two loops theory
Trailblazers
Protectors
Firefighters
Illuminators
Platform

5. IPPOSI? Who?IPPOSI
A patient-led organisation
that works with patients,
government, industry,
& science to put patients at
the heart of health innovation

6. Priorities
20
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy

7. Patient-led activities
Health Hacks
Workshops
Conferences
Consultations
Round-tables
Working Groups
Training Days
Rare Diseases
eHealth
Clinical Research
Health Information
Health Economics
Patient Registries
Biobanking

8. Top 10 things we can do…
1. Stimulate research
2. Engage with patients and families
3. Focus on what matters rather than what can be counted
4. Need for partnership between patients, academics, across
stakeholders
5. Need appropriate protections and supports for patients and
families

9. Top 10 things we can do…
6. Interpret data protection regulations sensibly and proportionately
7. Regulate proportionately
8. Build the capacity of patient organisations
9. Collect information systematically
10. Recognise the equity that underpins public healthcare system

10. Practical “Roadmap” on patient involvement in R&D
Research design
and Planning
Design of Protocol
Informed Consent Study reporting
Post-study
communication
Patient Info
Leaflet
Trial steering committee
Investigators Meeting
Level
ofexpertise in
thedisease area required:
mediumhigh
Data Monitoring CommitteePractical
considerations
Health Technology
Assessment
Protocol
Synopsis
Research
priorities
Setting
research
priorities:
Information to
trial participants
Research conduct and
operations
Regulatory affairs
Dissemination,
communication,
post-approval
Source:
Geissler,
Ryll,
Leto,
Uhlenhopp
EPALCO/EUPATI
(2015,
unpublished)
Fundraising
for research
Ethics Review

11. 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.

12. Everyone is different!

13. Patient Narrative Project
Person-Centered, Coordinated Care
• A set of generic descriptors for what person-
centred, coordinated care looks and feels like
from the Irish service user perspective
• A definition for ‘person-centred coordinated care’
that is shared, understood and used by service
users and staff at all levels of the health service in
Ireland

14. Irish Patient Education Programme

15. Researchers need support too
• Why?
• Understand PPI and where it can be most effective in their work
• Participation vs Engagement vs Involvement?
• How?
• Bring together PPI info + resources relevant to your research in one place
• Guidance on methodologies / practices
• How to ensure it is meaningful? - Planning + Preparing
• Who?
• Access people affected to be involved in your research

16. Take Home Messages
Patient involvement can improve research quality
Education + Training of both patients & researchers is key
Support patient networks, communities & spread the word!
@IPPOSI www.ipposi.ie