The 9th Annual Patient Summit 2012 in London discussed the emergence of e-patients and their role in medical research and decision making. It highlighted patients' need for information to understand their disease and treatment options. The European Patients' Academy (EUPATI) was presented as a pan-European initiative to train patient advocates and provide educational resources to empower patients and facilitate their involvement in medical research.

1. 9th Annual Patient Summit 2012, London
The emergence of the
e-patient
Jan Geissler
Director, European Patients’ Academy on Therapeutic Innovation (EUPATI)
Co-founder, Leukemia Patient Advocates Foundation & LeukaNET
Secretary, European Forum For Good Clinical Practice (EFGCP)
Member, EU Committee of Experts for Rare Diseases (EUCERD)

2. The rollercoaster
patient journey
 Cancer puts patients &
families on a rollercoaster
ride
 Time is of essence
 Taking tough decisions
quickly
is difficult for the patient, family
and caregiver

3. What patients want to know
1. Understand the disease
2. Find the right doctor
3. Find other patients
4. Understand & consider
trial participation
5. Decide on therapy
6. Understand interactions, adherence, CAM

4. Rare Diseases: does the local
doctor really know best?
 Specialized doctor not
available locally
 Late/incorrect diagnosis
 Lack of access
 Stigma and inequity

5. "Informed Consent"?
 Healthcare systems do
not incentivize detailed consultation:
12 minutes from door to door…
 Medical/legal language barrier
§+ +

6. Lack of information is a key
healthcare problem
 Miscommunication and
double effort
 Suboptimal treatment
 Lack of trial participation
 Lack of adherence
 Interactions with CAM
(which every third cancer patient takes,
Annals of Oncology. doi:10.1093/annonc/mdi110)

7. The myth of the…
Google will stay.
Bad information can
only be displaced by
good information,
not by laws, codes - or by
staying away.
 Regulators and
politicians still live the
myth that a „walled
garden“ can be
created or maintained
 Source: Sunbury Park, Sunbury-on-Thames

8. Digital reality today: ALL patients
are accessing online information
 53 million Germans >14y are
online,
• largest growth in 50+ group,
• challenges in ethnic groups, low education,
70+
Source: “Initiative 21 (N)onliner-Atlas” (2010)
 15 EU countries: ALL patients
have access to online
information
• Elderly through their friends and relatives
• Source: “EU EuroBarometer Report on Patient Involvement,
May 2012”

9. Through Social Media: Major
(r)evolution of Patient Advocacy
Information and support
 Grass-roots platforms on
treatment, trials, side effect mgmt
Advocate & Campaign
 Only patients can truly represent their needs
 “Patient Unrest” in the crowd
Enhance research
 Collaborate though the Internet:
unique contribution to trials & priorities

10. Example CML Advocates Network:
global leukemia advocacy platform
http://www.cmladvocates.net
Drivers
 Public directory of CML groups
 Advocacy platform for patient advocates
 Capacity building, campaigns,
cooperation
 Key enabler: Social Media
Founded 2007 as a grassroots network
65 organisations in 52 countries

11. Patients need innovation --
and more transparency
Paradigm shifts in Objective information &
health research more transparency needed
 Molecular pathways
 Genome sequencing,
 Translational research
 Personalized medicine,
orphanisation
 HTA (& QoL)
 Healthcare budgets
vs drug pricing

12. Patients' orgs: key role in building
new R&D environment
 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)

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

14. EUPATI: European Patients'
Academy on Therapeutic Innovation
 develop and disseminate accessible, well-structured
and user-friendly information and education on
medicines R&D
 build expert capacity by training patient advocates
 create the leading public library on medicines R&D:
7 languages, “creative commons” license
 facilitate patient involvement in R&D to support
industry, academia, authorities and ethics committees

15. Training areas of European
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 HTA
5. Design and objectives of clinical trials
(& roles of stakeholders)
6. Patients roles & responsibilities in medicines
development

16. Targeting advocacy leaders
& public at large in 7 languages
EUPATI Training Programme ( experts)
 Academic Modular Certificate Programme 100
 Patient Ambassadors. Patient patient
Journalists, Patient Trainers advocates
EUPATI Educational Toolbox ( education)
12.000
 Tool box with a variety of distributable formats patient
 Paper-based booklets, presentations,
eLearning, webinars, videos etc. advocates
EUPATI Internet Library ( information)
 Wiki” “YouTube” Social Media” Internet 100.000
Sources (Editorial Board)
 TV films and/or cartoons individuals

17. Summary
 The „Walled Garden“ does not exist:
A new generation of e-patients communicate, learn and
manage their health
 Patients are key partners in providing key information
and accelerating safer and more targeted research
 The European Patients’ Academy is the key pan-EU
initiative to empower “patients in research”

18. www.patientsacademy.eu
Twitter: @eupatients
as well as:
Jan Geißler
 jan@patientsacademy.eu
 Twitter @jangeissler
 LinkedIn, Facebook,
Twitter