October 25 th , 2017 PATIENTS – SCIENCE – INDUSTRY Structured and sustainable patient engagement Derick Mitchell
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October 25th, 2017
PATIENTS – SCIENCE – INDUSTRY
Structured and sustainable patient engagement
Derick Mitchell
Heart of the eHealth Ecosystem?
“People perform better when they are informed better”
@EpatientDave
Collaborative sensemaking
“We are witnessing the collapse of expertise and the
rise of collaborative sensemaking”
David Holzmer
Evidence-based patient advocacy
In God We Trust…..…Everyone Else Bring Data!
IPPOSI? Who?IPPOSI
A patient-led organisation that works with patients, government, industry,
& science to put patients at the heart of health innovation
IPPOSI Priorities + Members
20
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
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
Our Resources
INFORM ENGAGE EMPOWER
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”
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
What do we need to enable use (& re-use) of patient data?
Good Education
Legal Frameworks
SOPsFrameworks of Engagement
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
Roles change as a result of EUPATI course- creating patient leadersRole 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.
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
TCD summer school - 2017Human Computer Interaction in eHealth
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
EHR Programme Roadmap
18
Start Year 2 Start Year 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 ImplementationPortal & 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
EHR Programme Roadmap – including Patient Engagement
19
Start Year 2 Start Year 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 ImplementationPortal & 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
http://www.ehealthireland.ie/Knowledge-Information-Plan/
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)
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
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
Themes Emerging From Phase 1
My healthcare
experiences
Healthcare I am
confident in
My journey through
healthcare
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.
• 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
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’
Your Voice Matters – Results workshop
Monday, Nov. 13th, 2017
Royal College of Physicians, Kildare St. Dublin
10am – 3pm
Where we want to get to…
INFORM ENGAGE EMPOWER
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