health information seminar - dr derick mitchell - oct 2017
Post on 22-Jan-2018
931 Views
Preview:
TRANSCRIPT
October 4th, 2017
PATIENTS – SCIENCE – INDUSTRY
Influencing Policy, Activating Patients, Harnessing Industry
Derick Mitchell
My talk
• What is IPPOSI?
• How are patient voices changing health innovation?
• IPPOSI Survey (QUIZ)
The patient advocate perspective
Ingrid BrindleHawton-Thornley Medical Centre PPG
IPPOSI-HISI Patient-led WorkshopNov 2016
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
20
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
Our Resources
INFORM ENGAGE EMPOWER
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”
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
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
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.
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
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
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
Building a new Irish healthcare environment
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)
Health Information?
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 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
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
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 sustainablepatient engagement
(and demonstrates the ‘return’ on this engagement for all players)
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’
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
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 CareyMove4Parkinson’s
IPPOSI Round-table with Dept. of HealthMay 2015
top related