Post on 22-Jan-2018
PATIENTS – SCIENCE – INDUSTRY
RSCI Research Summer School, June 7th, 2017
Derick Mitchell, PhD
Evidenced-based patient advocacy?
“The perfect is the enemy of the good”
http://metro.co.uk/2015/05/19/intermarche-campaign-celebrating-ugly-fruit-and-veg-is-brilliant-5204782/
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 policy, R&D dialogue
• Many patient orgs are not focused on policy/R&D issues
IPPOSI? Who?IPPOSI
A patient-led organisation that works with patients, government, industry,
& science to put patients at the heart of health innovation
Our Priorities
20
Actively advocate for improved + equitable
patient access to Health Innovation
Promote meaningful patient involvement in
Health Research and Policy
Patient-led activities
Health Hacks
Workshops
Conferences
Consultations
Round-tables
Working Groups
Training Days
Rare Diseases
eHealth
Clinical Research
Health Information
Health Economics
Patient Registries
Biobanking
Irish public perception
Irish general public’s attitude towards clinical research
Conclusions
Public Survey
• Limited understanding of how one can participate
(donating blood/tissue, medical info.)
• Ethical concerns
• Unnecessary Risk
IPPOSI patient members (anecdotal)
(➕)• Access to innovative medicines &
technologies
• Improved quality of care
(➖)• Benefit : Risk
• Randomization
• Compassionate Use
• Ending of trial
Educated Patient Communities
IPPOSI Training for Members
• Clinical Research• Health Technology Assessment• Pharmaceutical Code of Practices• Health Informatics (coming soon!)
EUPATI produces Expert Patients on Medicines R&D
• Training & Education• Disseminates through national platforms
Areas covered by the Patients’ Academy
1.Medicines development process from research to approval
2. Personalized and predictive medicine
3.Drug safety and risk/benefit assessment of medicines
4. Pharmaco-economics, health economics and health technology assessment
5. Design and objectives of clinical trials (& roles of stakeholders)
6. Patients roles & responsibilities in medicines
development
…and NOT:
develop indication-
or therapy-specific
information!
EUPATI Toolbox – www.eupati.eu
EUPATI Toolbox – Content available
Infographics
Articles
Fact sheets
PowerPoints
Videos
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.
Creating patient leaders
Irish Patient Education Programme
• 2017 Pilot
• 20 places for patients / patient advocates
• Pilot modules• Clinical Trials• Regulatory Aspects incl. Benefit:Risk• Health Technology Assessment
Will it make any difference?
Patient involvement can:
• Provide a different perspective
• Make language + content of research information clear and accessible
• Help to ensure research methods are acceptable and sensitive
• Help ensure that research uses outcomes that are important to the public
• Help increase participation in research in general
Building a new Irish healthcare environment
2016 – Mental Health Local Recovery Groups (HSE)
2016 - Patient Narrative Project on Person-centered care (CSPD-HSE, IPPOSI)
2017 - National Patient Experience Survey in Hospitals (HIQA, HSE, DoH)
2017 - National Clinical Effectiveness Committee – PPI Values (DoH, NCEC)
2017 –Personas for Electronic Health Records (eHealth Ireland)
Building a new Irish health research environment
2014 - PPI paper - Irish Health Research Forum
2016/17 - PPI reviewers - HRB
2017 - PPI Ignite Funding – HRB + IRC
2017 – Scientific Advice – Patient Involvement – HPRA
Health Information & Patient Safety Bill?
Human Tissue Bill??
Take Home Messages
Patient involvement can improve research quality
Education + Training of both patients & researchers is key
Support patient networks, communities & spread the word!
@IPPOSI www.ipposi.ie