The role and work of IPPOSI in Connected Health and related areas.

1. PATIENTS – SCIENCE – INDUSTRY
August 8th, 2016
CHESS ITN

2. of Healthcare?
“People perform better
when they are informed
better”
@EpatientDave

3. • https://vimeo.com/164425074

4. My presentation today
• IPPOSI? - the patient-led perspective
• Patient involvement in health research
• Importance of training - ‘Expert Patients’
• Patient Advocate Perspective on Connected Health

6. IPPOSI Members

7. IPPOSI Members – Science (examples)

8. IPPOSI Members – Industry (examples)

9. Partnership Approach
Other Stakeholders
Patient
Experts
• Encourage open, constructive dialogue and
interaction
• Highlight value that patients can bring
• Develop new opportunities for patients to
influence decision-making

10. Public-Private Partnership
• Grant from Department of Health
(via Health Research Board)
• Industry membership fee

11. 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

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

13. Patients have a key role in all aspects of health-
related research
Public
Research Ethics
Committees
Competent
authorities
Policy makers
/ Research Policy
HTA agencies
& committees
Research subject
Info provider
Advisor
Reviewer
Co-researcher
Driving force
Clinical Research
Research design
Informed consent
Ethical review
Value assessment
Health policy

15. 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 of expertise in the disease 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EPALCO/EUPATI (2015, unpublished)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

16. • 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 health research
16

17. Will it make a difference?
Patient involvement can:
• Provide a different perspective
• Make language + content of research information clear and accessible
• Help to ensure research methods are acceptable and sensitive
• Help ensure that trials use outcomes that are important to the public
• Help increase participation in research in general

18. Impact?
DOI: 10.1111/hae.12720

19. 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

20. Training
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

21. EUPATI Patient Experts
Training Course
EUPATI develops patient education
targeted towards different audiences
100
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)

22. EUPATI directly contributing to paradigm shift
Key objectives:
1. Develop and disseminate objective, credible, correct and up-to-date public knowledge
about medicines R&D
2. Build competencies & expert capacity among patients & public
3. Facilitate patient involvement in R&D to collaborate in academic research, industry
research, authorities and ethics committees
…and NOT:
develop indication- or therapy-specific information!

23. Areas covered
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, health technology assessment
5. Design and objectives of clinical trials (& roles of stakeholders)
6. Patients roles & responsibilities in medicines development

24. EUPATI Patient Expert Course participants
2014-2015 2015-2016

25. Roles change as a result of the course, creating patient leaders
Role Before EUPATI After
Member of patient organisation, not actively involved 20% 0%
Active role in a patient organisation 60% 72%
Leadership role in a patient organisation 52% 72%
Employee of a patient organisation 20% 20%
Volunteer role in a patient organisation 68% 84%
Presenting at conferences, workshops etc. 44% 72%
Advising a pharmaceutical company 8% 52%
Advising a regulatory agency 12% 40%
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.

26. EUPATI Toolbox – www.eupati.eu
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.

27. EUPATI Toolbox – Content available
Infographics
Articles
Fact sheets
PowerPoints
Videos
www.eupati.eu

28. Education Platforms
EUPATI
Austria
Belgium
France
Germany
Ireland
Italy
Luxem-
bourg
Malta
Poland
Spain
Switz-
erland
UK
Denmark
Greece
Nether
lands
Portugal
Serbia
Slovakia

29. EUPATI - Promoting the paradigm shift

30. IPPOSI = Irish 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
• Noirín O’Neill, General Advocate
9 Irish Trainees

31. Patients: Experts by Experience

32. Connected Health
“using technology + health information to
improve patient outcomes”
‘Ask the market’

33. Person-centered Healthcare
• Integrated Care
• Electronic Health Records
• Data Protection
• Data Sharing
• Meaningful Use

34. What do Irish people think?
Irish general public’s attitude
towards clinical research,
Nov. 2009

35. IPPOSI views
• Positive attitudes towards data sharing
• Security / Privacy
• Appropriate use
• Patients as ‘drivers’ of their data
• Realising full potential of patient registries

36. What is IPPOSI doing?
European Connected Health Network
– ENJECT
Patient-Researcher workshop

37. Active Partnerships
• Annual Round-table with Dept. of
Health
• eHealth Ireland Committee +
Ecosystem
• Individual Health Identifier –
Privacy Impact Assessment
• Narrative for person-centered,
coordinated care (HSE)

38. Take Home Messages
• Patient involvement from the beginning and throughout the
process of R&D
• From ‘tokenism’ to ‘partnerships’
• Training on ‘roles and responsibilities’ is key
• Shift in thinking
• patients should have more control of their data / record