IPPOSI CEO Derick Mitchell discusses patient involvement in research

1. November 2015
PATIENTS – SCIENCE – INDUSTRY
Patient Involvement in Research
Derick Mitchell

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

3. IPPOSI? Who?IPPOSI
Mission
We expedite development of and patient access to innovative therapies through a
unique partnership of Patient Groups, Industry and Science
Priorities
• Bring a patient perspective to clinical research in Ireland
• Actively influence policy that impacts on research and 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
SCIENCE
INDUSTRY
PATIENT
EXPERTS
OTHER
STAKEHOLDERS
Consensus
Non-
Lobbying

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. Clinical Trial Activity in Ireland?
*Including only open studies, excluding studies with unknown status
Data Source: Clinicaltrials.Gov
13

14. What do Irish people think?
26 12 20 12 29 1
50 15 16 5 14
56 14 11 4 14 1
60 17 14 3 5 2
I would only participate in
clinical trials if I was very
sick
I would be willing to supply
personal medical
information for medical
research if it is done in a
confidential manner
I would be willing to donate
blood to be used for clinical
research
I think carrying out clinical
research in Ireland with the
aim of developing new ways
to treat many diseases is a
good idea
Strongly agree Agree Neither/nor Disagree Disagree strongly DK
{Base: n=1000, All adults}
Irish general public’s attitude
towards clinical research,
Nov. 2009

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

16. Public information campaign
clinicaltrials.ie

17. Training Patients
• IPPOSI Annual Training
• December 9th, 2015
9:00-12:00pm
Boston College,
St. Stephen’s Green,
Dublin 2

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

19. Patients as partners of research:
More needs to be done!
“Rare cancers will never be a priority unless the patients
make it one. Patients themselves must therefore play a
larger role in driving forward the search for therapies.”
Amy Dockser Marcus (@AmyDMarcus)

20. Good Shepherds
“Involving patients in all your research from design
to implementation increases your chances of
success”
Graham Love, CEO Health Research Board
“We need to engage clinicians and patients from the
start, understand what their priorities are, and explain
what the benefits can be, instead of being overly
bureaucratic.”
Richard Corbridge, Chief Information Officer, HSE

21. Patient Training

22. • 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
22

23. IPPOSI & EUPATI
• EUPATI produces Expert Patients on Medicines Research
& Development
• Provides Training & Education
• Disseminates through national platforms
The 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. 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)

25. 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

26. 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!

27. 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

28. Gone global…..

29. Take Home Messages
Patient involvement in research is here to stay
Education + Training of both patients & researchers are
key principles
@IPPOSI www.ipposi.ie