ppi summer school, ul - laura kavanagh - june 2017
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PATIENTS – SCIENCE – INDUSTRY
UL Health Research Institute Summer School, 22 June 2017
Laura Kavanagh, Research & Advocacy
IPPOSI
“Turning Patients into Partners”
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
Incorporating the patient voice
Call to action:
• Address the hierarchical rhetoric
• ‘Walk 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
Patients in action!
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
EUPATI www.eupati.eu
• The EUPATI Toolbox on Medicines R&D
• The EUPATI Patient Expert Training Course
Patient education provided by EUPATI
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:
indication- or therapy-specific information!
EUPATI Toolbox - Content
Infographics
Articles
Fact sheets
PowerPoints
Videos
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.
Creating patient leaders
EUPATI now expanding beyond the EU…Interest coming from Turkey, Cyprus, Israel, Russia and Brazil
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
UL Health Research Institute Summer School, 22 June 2017
WORLD Café
Patient experts in action
• Workshop participants initially divided among 2/3 tables
• After 20/30 minutes, groups rotate to a new table
• EUPATI Fellows will facilitate different discussions around PPI in medicines R&D at each table
• Group members are invite you to provide comments 1) orally 2) visually on the paper provided (post-its and markers)
• The 2nd/3rd groups visiting the table will be provided with a summary of discussions to date by the EUPATI Fellow
• EUPATI Fellows – with your input – will share interesting points, further questions/challenges, proposed solutions to a plenary
Take Home Messages
Patient involvement can improve research quality
Education + Training of both patients & researchers is key
Support patient networks, communities & spread the word about patient involvement!
@IPPOSIwww.ipposi.ie
Provide your contact details –future community of practice
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