Irish Platform for Patient Organisations, Science & Industry - the importance of patient involvement in research, and patient training on medicines development and health research.

1. PATIENTS – SCIENCE – INDUSTRY
Derick Mitchell
Jan 14th, 2016

2. My presentation today
• IPPOSI?
• Patient involvement in Research
• Clinical Research / Clinical Trials
• Patient Training
• European Patients Academy (EUPATI)

3. IPPOSI? Who?IPPOSI
Unique partnership of Patient Groups,
Industry and Science
Expedite the development of and
patient access to innovative therapies
Priorities
• Bring a patient perspective to clinical research, connected health, health economics
• Actively influence policy that impacts on research + access to innovative therapies
“Putting patients in policy and medicines development”

4. IPPOSI Members – Patients’ Organisations

5. IPPOSI Members – Science

6. IPPOSI Members – Industry

7. Leadership
Other Stakeholders
Patient
Experts

8. IPPOSI Funding
• Grant from Department of Health
(via Health Research Board)
• Industry membership fee

9. Patient involvement in research
Distinct from:
• Raising awareness
• Sharing knowledge
• Creating a dialogue with the public
• Recruitment of people as participants in research
Active partnership between members of the public
and researchers in the research process

10. Unique insights

11. Patient involvement in research can:
• Provide a different perspective
• Make language + content of information clear and accessible
• Help to ensure study methods are acceptable and sensitive
• Help ensure that research uses outcomes that are important to the
public
• Help increase participation in research

12. What’s happening in Ireland?

13. Good Shepherd
“Involving patients in all your research from
design to implementation increases your
chances of success”
Graham Love, CEO Health Research Board

14. Clinical
Trial
Activity
in
Ireland?
*Including only open studies, excluding studies with unknown status
Data Source: Clinicaltrials.Gov
14

15. Irish public perception
Irish
general
public’s
attitude
towards
clinical
research,
Nov.
2009

16. Conclusion
• Limited understanding of how one can participate
• (i.e. donating blood/tissue, medical information)
• Ethical concerns
• Unnecessary Risk

17. Public information campaign
clinicaltrials.ie

18. • Patient‘s organisations have unique insights in “real life“
and “real needs“ of patients:
• Clinical trial design
• Priority setting
• Research policy
• Training required to get the expertise required to
contribute to research & development projects
Building a new environment for research
18

19. Real solution? - The ‘Expert’ Patient
IPPOSI Training for Members
• Clinical Research
• Health Technology Assessment
• Pharmaceutical Code of Practices
• Health Informatics (coming soon!)
IMI-EUPATI produces Expert Patients on Medicines R&D
• Training & Education
• Disseminates through national platforms

20. EUPATI
Patient
Experts
Training
Course
EUPATI develops patient education
targeted towards different audiences
53+50
patient
experts
EUPATI
Educational
Toolbox
EUPATI
Internet
Library
English
French
German
Spanish
Polish
Italian
Russian
English
Patient
advocates
(12,000)
Health-­‐
interested
public
(100,000)

21. Three
years
of
EUPATI: Much
has
been
done!
…
Reflection,
consensus,
dialogue,
community
building,
Engagement
at
EUPATI
workshops
in
Frankfurt,
Barcelona,
Rome,
Warsaw,
Dublin
103
Patient
Expert
Trainees
Online
Toolbox
available
in
January
2016

22. Areas covered by the Patients’ Academy
1.Medicines development process from research to approval
2. Personalized and predictive medicine
3.Drug safety and risk/benefit assessment of medicines
4. Pharmaco-economics, health economics and health technology assessment
5. Design and objectives of clinical trials
(& roles of stakeholders)
6. Patients roles & responsibilities in medicines
development
…and NOT:
develop indication-­
or therapy-­specific
information!

23. IPPOSI = Irish National Platform
• Rachel Lynch, FibroIreland
• Damien Peelo, COPD Support Ireland
• Julie Power, Vasculitis Ireland Awareness
• Sharon Thompson, Rare Dis. + Palliative care
• John Dowling, Men Against Cancer
• Caitriona Dunne, Fighting Blindness
• Joan Jordan, MS Ireland
• Katie Murphy, CF Ireland
8 Irish Trainees
The
EUPATI
project
is
receiving
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.

24. 2016 – Expert Patients on the road…..
April
NUI
Galway
June
21st
Univ.
of
Limerick
October
4th
Dublin
Castle
August
Belfast
(tbc)
July
Cork
(tbc)

25. Where can we go from here?
More
Patient
&
Researcher
TrainingMore
Public
Information Improve
Research
Environment

26. Take Home Messages
Patient involvement can improve research quality
Education + Training of both patients & researchers is key
@IPPOSI www.ipposi.ie