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