Date post: | 22-Jan-2018 |
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January 11th, 2018
PATIENTS – SCIENCE – INDUSTRY
Structured & Sustainable Patient Involvement
SPHERE Conference 201811/1/2018 www.ipposi.ie
My talk
• IPPOSI
• How patient voices are changing health research + innovation?
• The power of patient-driven data & evidence
• Harnessing Patient Experience
SPHERE Conference 201811/1/2018 www.ipposi.ie
Patients as Partners?
SPHERE Conference 201811/1/2018 www.ipposi.ie
Collaborative sensemaking
“We are witnessing the collapse of expertise and the rise of
collaborative sensemaking”
David Holzmer
SPHERE Conference 201811/1/2018 www.ipposi.ie
Evidence-based patient advocacy
In God We Trust…..…Everyone Else Bring Data!
SPHERE Conference 201811/1/2018 www.ipposi.ie
IPPOSI? Who?IPPOSI
A patient-led organisation
that works with patients,
government, industry,
& science to put patients at
the heart of health innovation
SPHERE Conference 201811/1/2018 www.ipposi.ie
IPPOSI Priorities + Members
20
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
SPHERE Conference 201811/1/2018 www.ipposi.ie
PATIENT ORGANISATIONS
SCIENCE
INDUSTRY
SPHERE Conference 201811/1/2018 www.ipposi.ie
Public Private Partnership
IPPOSI Board: Grant from Department of Health
(via Health Research Board)
Industry membership fee
Project Funding
8 Patient Organisations
6 Scientific Members
6 Industry Members
2016/2017 Board
FUNDINGLEADERSHIP
SPHERE Conference 201811/1/2018 www.ipposi.ie
Patient-led activities
Health Hacks
Workshops
Consultations
Round-tables
Working Groups
Submissions
Conferences
Clinical Research
Health Information
Patient Data
Health Economics
Patient Registries
Access to Medicines
Data Protection
Patient Experience
SPHERE Conference 201811/1/2018 www.ipposi.ie
What do patient advocates want re: health research?
That the patient voice is listened to
• To be involved as early as possible in research design, priority setting, policy
• To improve the quality of research - less wastage
• To ensure better use/reuse of research outputs and tools
• To generate impact and burden data to support the results of clinical trials
• To use online / ehealth / mobile health apps to generate patient-based evidence
SPHERE Conference 201811/1/2018 www.ipposi.ie
What do we need to embed PPI in research + practice?
• Includes people, funding, networks, supports
• Education + Training for BOTH researchers and patients / public
• Evidence to inform practice
• High quality reporting to grow evidence base
• Understanding how PPI works in different contexts
ContextEvidence + Reporting
Resources + Infrastr.
Education
Demonstrate the impact & how it makes a difference
SPHERE Conference 201811/1/2018 www.ipposi.ie
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, research, dialogue
• Many patient orgs are not focused on macro policy issues
“The perfect is the enemy of the good”
SPHERE Conference 201811/1/2018 www.ipposi.ie
Wow!.....passionate and knowledgeable about PPI in research
Early Adopters
Constituency 2
Constituency 3“Hmm . . . show me the evidence that all this works and is helpful”
“Well …. PPI is a good idea but where on earth do I start?”
SPHERE Conference 201811/1/2018 www.ipposi.ie
Current Challenges
• Research not (yet) embedded in Irish healthcare system?
• Support & Training for Patients for specific roles in research?
• Equality, Inclusiveness & Sustainability of current efforts?
• How to shift the power balance between researchers and patients?
• Qualitative research tends to be at bottom of research hierarchy?
• Evidence of the value and impact of PPI?
• An over-arching vision for PPI in Research?
SPHERE Conference 201811/1/2018 www.ipposi.ie
2025 – a vision for PPI in Research in Ireland?
To begin this process:
• Develop a common understanding
• Share learning and ‘know how’
• Support organisations to develop robust PPI infrastructure
• Set standards and policies
• Embed the principles and inform the emerging practice
• Assess the impact of PPI in research
2018 - Where are we?
Research Leadership
5 PPI Ignite awards (€1.75m)University of Limerick – Prof Anne MacFarlane
University College Dublin - Prof Thilo Kroll
NUI Galway - Prof Sean Dinneen
Dublin City University - Dr Veronica Lambert
Trinity College Dublin - Prof Mary McCarron
Royal College of Surgeons, Ireland
University College Cork
Irish College of General Practitioners
Many other Irish researchers and research orgs
Health Agency Leadership
Dept. of Health
Muiris O’Connor, Head of Research & Analytics, Assistant National Director
HSE
Ana Terres – HSE Head of Research and Development, Assistant National Director
HRB
Anne Cody – Head of Pre-Award, Public Reviewers of proposals
2018- Where are we?
Patient / Patient Org. Leadership
• IPPOSI - Derick Mitchell, CEO
• MRCG - Avril Kennan, CEO
• Condition-specific patient orgs:
• Fighting Blindness
• Irish Cancer Society
• MS Ireland – Ava Battles, CEO
• CF Ireland – Philip Watt, CEO
• 9 Irish EUPATI Fellows (+4)
• Irish Health Research Forum
Links to International Leadership
• EUPATI
• European Patients Forum
• EURORDIS
• Several UK groups (NIHR, INVOLVE, James Lind, COMET, CRUK, etc.)
• PCORI (USA)
• CIHR (Canada)
• Cochrane
• EU Projects - H2020, IMI
2018- Where are we?
Public / Patient / Media Interest
SPHERE Conference 201811/1/2018 www.ipposi.ie
Frameworks of Involvement
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)
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)
SPHERE Conference 201811/1/2018 www.ipposi.ie
Metrics of Value of Involvement
• Anecdotal ----Qualitative----Quantitative
• Time / Cost savings
• Improved relationships
• Outcomes of relevance to patients
SPHERE Conference 201811/1/2018 www.ipposi.ie
Assessing the Financial Value of PPI
From:
A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project. Levitan B et al., Drug Inf J : Therapeutic Innovation & Regulatory Science. Published: July 17, 2017. https://doi.org/10.1177/2168479017716715
SPHERE Conference 201811/1/2018 www.ipposi.ie
Tendering & Procurement impact
DOI: 10.1111/hae.12720
SPHERE Conference 201811/1/2018 www.ipposi.ie
The Impact of Patient Education
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.
SPHERE Conference 201811/1/2018 www.ipposi.ie
Pilot Irish Patient Education Programme
7 months – ends on March 21st, 2018
3 x 6-week Modules
• Understanding Clinical Trials
• Regulatory, Medicines Safety, PV
• HTA Principles + Practices
Irish Education Partners
2 Universities, 1 Regulator, 1 HTA Agency,
1 LMS website: www.patientsinvolved.ie
21 Students – Irish patients, carers, advocates
SPHERE Conference 201811/1/2018 www.ipposi.ie
20142018 = Eighteen
Interest from:Brazil, Cyprus, Finland, Hungary, Israel, Russia, Serbia, Sweden and Turkey
EUPATI Countries
Legal Entity
SPHERE Conference 201811/1/2018 www.ipposi.ie
EUPATI Countries 2018
Regional Groups
SPHERE Conference 201811/1/2018 www.ipposi.ie
The power of patient-driven evidence + data
SPHERE Conference 201811/1/2018 www.ipposi.ie
Generating patient-based evidence
• Health stakeholders take decisions based on evidence, not on (our) anecdotes
• Patient organisations are best-placed to generate patient-relevant data
• Cost-effectiveness is key. Prove that the informed patient is cost-effective…..!
SPHERE Conference 201811/1/2018 www.ipposi.ie
Health Information / Patient Data
SPHERE Conference 201811/1/2018 www.ipposi.ie
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
Development of Electronic
Health Records
(10 years)
National Education / Training on EHRsFor 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-outPatient Portal
Other building blocks Decision-making boards
Promoting Partnerships Communication
Openness & Transparency
Advocating for essential building blocksReal-Time information
Informed Consent Bi-directional flow of information
Tracking patient outcomes
Public Trust + ConfidenceWho, When, Why?
Consent – How?Special Considerations for individual groups
Data Linkage & Sharing
TrustPatient Experience
Education and Training
CollaborationCommunication
TimingSharing
CommunityAccess
Consent
Data Quality
SPHERE Conference 201811/1/2018 www.ipposi.ie
Access To Information
• Healthlink - National Message Broker
• Healthmail - National Secure Clinical Email Solution
• Integration with building blocks for national Electronic Health Record
• Innovation - development of MyHealthPortal
SPHERE Conference 201811/1/2018 www.ipposi.ie
Patient Registries
• Evaluating new treatments in real-world settings (Pharmaco-vigilance)
• Rare Disease Reference Centres of Excellence
Slide courtesy of Abigeal Jackson, CF Registry of Ireland
Umotif, PatientslikeMe, Carenity
Graphically display charts, timelines and various representations of different measures
SPHERE Conference 201811/1/2018 www.ipposi.ie
Harnessing Patient Experience
SPHERE Conference 201811/1/2018 www.ipposi.ie
Patient Experience Survey - Hospitals
SPHERE Conference 201811/1/2018 www.ipposi.ie
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.
Phases 1 + 2 + 3:
Person-centered, co-ordinated care
Person centered co-ordinated care
Phase 1
What people in Ireland want to experienceduring their care when they require anumber of health services at one time orover 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
SPHERE Conference 201811/1/2018 www.ipposi.ie
Themes Emerging From Phase 1
My healthcare
experiences
Healthcare I am
confident in
My journey through
healthcare
SPHERE Conference 201811/1/2018 www.ipposi.ie
My Journey through Healthcare
• My care includes issues that my health influences, such as finances, housing, employment, ability to travel and access to transport.
• I have services delivered by the most suitable healthcare staff in the correct setting and when I need them.
• I can have one person who will oversee and follow up on all my care.
SPHERE Conference 201811/1/2018 www.ipposi.ie
SPHERE Conference 201811/1/2018 www.ipposi.ie
Phase 2
• http://www.hse.ie/yourvoicematters
SPHERE Conference 201811/1/2018 www.ipposi.ie
• Survey remains live• Proof-of-Concept• Producing data on patients’ experience of care when they use
more than one health service
• Target: • 1000 stories nationally, particularly in relation to older people and
people with chronic conditions
• Channel through Integrated Care Programmes HSE
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 POC 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’
SPHERE Conference 201811/1/2018 www.ipposi.ie
International Conference on Integrated Care
May 2017, UCD
https://patientsincluded.org
• 50 free admissions for IPPOSI patient members• 20 took up co-chair positions
SPHERE Conference 201811/1/2018 www.ipposi.ie
PPI is now Global
• EUPATI - EU• PCORI - USA
• PFMD
• INVOLVE UK + Australia• ICHOM• ISPOR
• EU Projects• H2020, IMI• Joint Programmes• IMI – PARADIGM (2018-2021)
SPHERE Conference 201811/1/2018 www.ipposi.ie
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 Committee Practical
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)
Fundraisingfor research
Ethics Review
SPHERE Conference 201811/1/2018 www.ipposi.ie
Focus: the three decision-making points
Research priority settingEarly dialogues with regulators
and HTA bodiesDesign of clinical trials
SPHERE Conference 201811/1/2018 www.ipposi.ie
Where IPPOSI wants to get to…
INFORM ENGAGE EMPOWER