National Health Information Seminar: Better data, better decisions October 2017

1. October 4th, 2017
PATIENTS – SCIENCE – INDUSTRY
Influencing Policy, Activating Patients, Harnessing Industry
Derick Mitchell

2. My talk
• What is IPPOSI?
• How are patient voices changing health innovation?
• IPPOSI Survey (QUIZ)

3. The patient advocate perspective
Ingrid Brindle
Hawton-Thornley Medical Centre PPG
IPPOSI-HISI Patient-led Workshop
Nov 2016

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

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

6. Our Resources
INFORM ENGAGE EMPOWER

7. Incorporating the patient voice
• Hierarchical Rhetoric
• ‘Walking the walk’ at the highest possible level
Challenges:
• Decision-makers never want to change their processes
• Patients are not trained in health policy, dialogue
• Many patient orgs are not focused on policy/R&D issues
“The perfect is the enemy of the good”

8. 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

9. 18+ EUPATI National Platforms
• Bring all stakeholders together in countries
• Address educational needs in R&D
• Disseminate EUPATI’s training material
National platforms now established in:
AT, BE, FR, DE, IE, IT, LU, MT, PL, ES, CH, UK, DK,
SK, PT, NO, RO, GR
Additional platform initiatives ongoing in
Serbia, Brazil, Japan

10. 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.

11. Practical “Roadmap” on patient involvement in medicines 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 (2017)
Therapeutic Innovation & Regulatory Science. (doi: 10.1177/2168479017706405)
Fundraising
for research
Ethics Review

12. First Irish Patient Education Programme
7-month-pilot programme in Health Innovation
3 Modules – Clinical Trials, Regulatory Affairs, HTA
Practices
3 Education Partners - UCD, TCD, HPRA
1 elearning website: www.patientsinvolved.ie
21 Students from 9 counties - 36 applications

13. Building a new Irish health research environment
Patient & Public Involvement (PPI)
2014 - PPI paper - Irish Health Research Forum
2016/17 - PPI reviewers - HRB
2017 - PPI Ignite Funding – HRB + IRC
2017 – Scientific Advice – Patient Involvement – HPRA

14. Building a new Irish healthcare environment
2008 - National Strategy for Service User Involvement in
Health and Social Services (DoHC & HSE)
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2016 – Values in Action, QID Cultures of Person-centeredness (HSE)
2016 – Mental Health Local Recovery Groups (HSE)
2016 – Privacy Impact Assessment for Individual Health Identifier
(eHealth Ireland)
2017 - National Patient Experience Survey - Hospitals (HIQA, HSE, DoH)
2017 - National Clinical Effectiveness Committee – PPI Values (DoH,
NCEC)
2017 –Personas for Electronic Health Records (eHealth Ireland)
2017/18 - Patient Narrative Project on Person-centered care
(CSPD-HSE, IPPOSI)

15. Health Information?

16. 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

17. What we have learned…
• Trust is vital - patients must believe that their data is
secure and only used for the purposes they consented
to
• Equally, create the situation where patients are the
drivers of their data, ensuring it is utilised to improve
their health

18. What do we need to enable use (& re-use) of patient data?
• Good Education
• Legal Frameworks
• SOPs
• Framework of Engagement
Everyone to understand the potential
and know how to make the most of it

19. What would a framework of engagement for
use (& re-use) of patient data look like?
 Engages
 Empowers
 Educates
 Evaluates
 Evolves
A unique framework that enables
structured, effective, meaningful,
ethical, innovative, and sustainable
patient engagement
(and demonstrates the ‘return’ on
this engagement for all players)

20. The Patient
Narrative
Project
Reference: Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient
Narrative Project for Person-Centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin.
Phase 1:
Person-centered,
co-ordinated care

21. Person centered co-ordinated care
Phase 1
What people in Ireland want to experience
during their care when they require a
number of health services at one time or
over time
Phase 2 + 3
A framework that will hear peoples’
experiences of using more than one health
service at a time
11 Focus
Groups
2 Online
Surveys
4 Regional
Workshops
Output: Statements (19) + Definition (1)
Online Survey
+ System
Partnerships

22. Themes Emerging
From Phase 1
My
healthcare
experiences
Healthcare
I am
confident in
My journey
through
healthcare

23. My healthcare experiences
• Staff communicate with me in a way that I understand.
• I have up-to-date information on my health condition(s), treatments, and available support
services.
• Staff help me to understand the choices and services available to me now and for my future
care.
• Healthcare staff listen to me so that they understand my world and what is important to me.
• I am treated with empathy, respect and dignity in all dealings with healthcare staff.
• In partnership with healthcare staff, I make choices based on what I prefer and my goals.
• If I choose, my information can be shared securely with relevant healthcare staff.
• I do not have to repeat myself each time I meet new healthcare staff involved in my care.
• I can contact the relevant healthcare staff to ask questions that are important to me and I get
timely responses to my questions.
• Decisions about my care include me as much as I want and involve my carers if I choose.

25. Phase 2
• http://www.hse.ie/yourvoicematters

26. • Survey Live Sept-Oct. 2017
• Proof-of-Concept
• Producing data on patients’ experience of care when they use
more than one health service during this period
• Target:
• 1000 stories nationally, particularly in relation to older people
people with chronic conditions
• Channel through Integrated Care Programmes HSE

27. By end of 2017… By end of 2018…
A ‘tried and tested’ framework
• To hear a high volume of patients’
experiences through the online
survey
• To use data to influence service
design, delivery and improvement
of integrated care
• A qualitative and quantitative
evaluation of the proof of concept
within the context of the HSE;
Integration into ‘business as usual’
• Framework (incl. resource
implications) to be integrated into a
‘business as usual’ model
• Quality and Patient Safety Structures
at CHO level will be essential
• QID publication: ‘Quality and Safety
Committees; Guidance and resources’

28. Wed. Oct. 25th, 2017
• eHealth Ecosystem Event
• Radisson Blu, Golden Lane, D2
• 1pm-5pm
• Highlights
• Projects in Ireland that empower
patients to manage their own health
• Ways that patients should be
involved in the innovation process

29. The patient advocate perspective?
“You’re looking at the macro picture and
you have to, but somewhere out there are
all these microchips and we’re making up
the macro picture.”
“Are we just the collateral damage while
you all get some years to sort out this
business? If the Troika wanted it, you
would be doing it tomorrow.”
Paul Carey
Move4Parkinson’s
IPPOSI Round-table with Dept. of Health
May 2015