This document discusses the need for a paradigm shift in public understanding of medical research and development (R&D) to better meet patient needs. It notes that current "success stories" only help small numbers of patients, and that patients urgently need therapeutic innovation. It argues that innovation in areas like cancer, rare diseases, clinical trial design, and personalized medicine requires new approaches in R&D. It also emphasizes the important role patient organizations can play by providing insights into patient experiences and priorities to help drive research. Finally, it introduces the European Patients' Academy as an initiative aiming to train patient advocates and foster collaborative efforts to make drug development more effective.

1. A paradigm shift in public
understanding of medical R&D
Anders Olauson, President European Patients’ Forum

2. Unmet needs for most patients
with life-threatening diseases
 “Success stories” available only to
small numbers of rare cancers, rare
diseases, other life-threatening conditions,
young and very old patients
 Patients need therapeutic innovation – urgently!
Source: RareCare (2012)

3. Patients need innovation --
paradigm shift in drug development
Innovation turns e.g. cancer,
rare diseases upside down:
 Molecular targets/pathways New approaches
 Genome sequencing,
needed
Translational research  clinical trial design
 Personalized medicine  trial recruitment
• Small trial populations  relationship
• Biomarkers required between
 Need for post-marketing data researchers,
 Health Technology Assessment, regulators, industry,
QoL, endpoints, comparators patients
 Healthcare budgets vs drug pricing

4. Overcoming public scrutiny
on research
 Lack of public confidence in
research leads to
• lack of trial recruitment
(6-12% of cancer patients take part
in research)
• delayed generation of meaningful
clinical data
• slow progress or lack of research
• bad image of research in population
 Objective information to the public &
more transparency urgently needed

5. Patients' orgs: key role in building
new environment for drug
development
 Patient organisations have unique insights
in „real life“ and „real needs“ of patients:
• Gap analysis in research priorities
• Clinical trial design
• Priority setting in healthcare budgets
Driving force
• Research policy
Co-researcher
Reviewer
 Training required to get expertise Advisor
required to contribute to scientific projects
Info provider
Research subject
Source: PatientPartner FP7
Project (2010)

6. EUPATI: The paradigm shift in
involving patients in medical R&D
 Great individual initiatives to train patient
advocates - by patient organisations,
academia, industry, healthcare
professionals,
 Complemented by:
The Patients’ Academy – a paradigm shift
in collaborative efforts of all stakeholders to
make drug development more effective in
Europe
 Wishing you success!

7. Get to know us!
Web:
www.patientsacademy.eu
Twitter: @eupatients
as well as: