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. IPPOSI Priorities + Members
20
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
7. Patient-led activities in eHealth
Health Hacks
Workshops
Consultations
Round-tables
Working Groups
Summer Schools
Conferences
Connected Health
Health Information
Patient Data
Health Economics
Patient Registries
Dynamic Consent
Data Protection
9. Incorporating the patient voice in eHealth
• 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 information policy, dialogue
• Many patient orgs are not focused on eHealth/policy issues
“The perfect is the enemy of the good”
10. What we have learned…
• Trustworthiness 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
11. 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
12. What do we need to enable use (& re-use) of patient data?
Good
Education
Legal
Frameworks
SOPs
Frameworks of
Engagement
13. 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
14. 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.
15. The Power of Patient Education
7-month programme in Health Innovation
Blended Learning – online + workshops
3 x 6-week modules
• Clinical Trials
• Regulatory Affairs
• Health Technology Assessment
3 x Education Partners - UCD, TCD, HPRA
1 elearning website - www.patientsinvolved.ie
21 Students from 9 counties
17. What would a framework of patient community
engagement for use (& re-use) of patient data look like?
EVOLVE
INFORM ENGAGE EDUCATE EMPOWER EVALUATE
Demonstrate the ‘return’ on the engagement for all players
18. EHR Programme Roadmap
18
StartYear 2 StartYear 3
Programme
Governance
National Requirements
Business Cases
Procurement
Office
Portal & integration Requirements
Acute Requirements
Deployment
Strategies
Community
Requirements
Prepare to deployCHO Readiness Assessment
HG Readiness Assessment Prepare to deploy
Portal & Integration Implementation
Portal & Integration
Procurement
Community Procurement Community Implementation
Acute Procurement Acute Implementation
Privacy and Data Sharing
Strategic
Business
Case
Programme Management
Communications and Engagement
CHG Implementation
Decision point involving
agreement with party outside
HSE, e.g. DoH, DPER
Decision point involving
agreement with HSE
stakeholders such as Hospital
Groups or CHO’s
Slide courtesy of Fran
Thompson, HSE
19. EHR Programme Roadmap – including Patient Engagement
19
StartYear 2 StartYear 3
Programme
Governance
National Requirements
Business Cases
Procurement
Office
Portal & integration Requirements
Acute Requirements
Deployment
Strategies
Community
Requirements
Prepare to deployCHO Readiness Assessment
HG Readiness Assessment Prepare to deploy
Portal & Integration Implementation
Portal & Integration
Procurement
Community Procurement Community Implementation
Acute Procurement Acute Implementation
Privacy and Data Sharing
Strategic
Business
Case
Programme Management
Communications and Engagement
CHG Implementation
Decision point involving
agreement with party outside
HSE, e.g. DoH, DPER
Decision point involving
agreement with HSE
stakeholders such as Hospital
Groups or CHO’s
Touch point involving patient
engagement / consultation
and involvement
21. Starting points…
2008 - National Strategy for Service User Involvement in
Health and Social Services (DoHC & HSE)
---------------------------------------------------------------------------
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)
22. 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
23. 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
24. Themes Emerging
From Phase 1
My
healthcare
experiences
Healthcare
I am
confident in
My journey
through
healthcare
25. 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.
28. • 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
29. 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’
30. Your Voice Matters – Results workshop
Monday, Nov. 13th, 2017
Royal College of Physicians,
Kildare St. Dublin
10am – 3pm
At the heart of the ecosystem is the empowered patient
We would like to create the situation where patients are the drivers of their data, ensuring it is utilised to improve their health.
A patient who, with the right information, could start to gain control of their health.
Encourage you to keep the patient at the centre of the developing ecosystem
Last year – experience of patients here
I presented the why, who etc. focus on HTA agencies
This year?
A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development. In pursuit of this we hold workshops, discussion groups, training days and conferences on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs.
Regulators and funders are doing it!
(user requ
(standards, data dictionary)
irements, information needs, absence of jargon, participatory approach)
Access issues (
– Informed and Explicit
5 patient contributors participated alongside PhD students in an educational summer school on Human Computer interaction in eHealth
A unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement
(and demonstrates the ‘return’ on this engagement for all players)
eHealth ‘to be’ architecture within Knowledge and Information plan
Context is how do you transform services towards what people want, when they want them.
The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services.
The Patient Narrative Project is a three phase project to progress to partnership working
listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff.
In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers
The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.
There are three themes of descriptors:
‘Care for me’ focused on the direct relational experience with healthcare professionals.
‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care.
‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services.
The Patient Narrative Project is a three phase project to progress to partnership working
IPPOSI, the Irish Platform for Patient Organisations, Science and Industry, led the first phase of the project. A UCD research team led by Dr Amanda Phelan carried out the research study which listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff.
In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers
The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.
There are three themes of descriptors:
‘My care experiences’ focused on the direct relational experience with healthcare professionals.
‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care.
‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
The experiences of patients, carers, and their organisations were translated into a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers. 19
The goal is that the descriptors + definition of what good integrated care and support looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.
‘Care for me’ ‘focused on the direct relational experience with healthcare professionals.
‘Care I can reply on’ ‘refers to the actual experience of care in terms of skills, quality, accountability and continuity of care.
‘Care in my journey through healthcare’ ‘represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
My healthcare experiences: Direct relational experience with healthcare profs
Healthcare I am confident in: Actual experience of care in terms of skills, quality, accountability and continuity of care
My journey through healthcare: Three aspects: holistic care, coordination of care within and across services, and access to services when needed.
The statements and definition indicate that Irish health service users want to be empowered in a seamless journey through the health services, they want to take an active informed role in their care and to be treated as people not health conditions.
In addition they expect staff to live the values of the HSE; care, compassion, trust and learning within the workplace and their interactions
10,000 Voices in NI - 14,000 patients have now completed this survey
40 per county and 20 OP and 20 CC with the additional stories from the populations covered in Social Inclusion.
In addition to the collection of data the project will review the most effective and efficient means of stakeholder engagement in order that this can inform the project and business plan for longer term.
identification of enablers and challenges to successful implementation
When someone tells you that patients cannot understand or just do not want to know, just look at the data…..
Our relationship is fragile, dynamic, uncomfortable, ambitious, and goal-oriented
Healthcare Environment is changing….are you?