PPI Summer School, UL - Laura Kavanagh - June 2017

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