1. 9th Annual Patient Summit 2012, London
The emergence of the
e-patient
Jan Geissler
Director, European Patientsโ 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
๏ฎ Cancer puts patients &
families on a rollercoaster
ride
๏ฎ Time is of essence
๏ฎ 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?
๏ฎ Specialized doctor not
available locally
๏ฎ Late/incorrect diagnosis
๏ฎ Lack of access
๏ฎ Stigma and inequity
5. "Informed Consent"?
๏ฎ Healthcare systems do
not incentivize detailed consultation:
12 minutes from door to doorโฆ
๏ฎ Medical/legal language barrier
ยง+ +
6. Lack of information is a key
healthcare problem
๏ฎ Miscommunication and
double effort
๏ฎ Suboptimal treatment
๏ฎ Lack of trial participation
๏ฎ Lack of adherence
๏ฎ Interactions with CAM
(which every third cancer patient takes,
Annals of Oncology. doi:10.1093/annonc/mdi110)
7. The myth of theโฆ
Google will stay.
Bad information can
only be displaced by
good information,
not by laws, codes - or by
staying away.
๏ฎ Regulators and
politicians still live the
myth that a โwalled
gardenโ can be
created or maintained
๏ฎ Source: Sunbury Park, Sunbury-on-Thames
8. Digital reality today: ALL patients
are accessing online information
๏ฎ 53 million Germans >14y are
online,
โข largest growth in 50+ group,
โข challenges in ethnic groups, low education,
70+
Source: โInitiative 21 (N)onliner-Atlasโ (2010)
๏ฎ 15 EU countries: ALL patients
have access to online
information
โข Elderly through their friends and relatives
โข Source: โEU EuroBarometer Report on Patient Involvement,
May 2012โ
9. Through Social Media: Major
(r)evolution of Patient Advocacy
Information and support
๏ฎ Grass-roots platforms on
treatment, trials, side effect mgmt
Advocate & Campaign
๏ฎ Only patients can truly represent their needs
๏ฎ โPatient Unrestโ in the crowd
Enhance research
๏ฎ Collaborate though the Internet:
unique contribution to trials & priorities
10. Example CML Advocates Network:
global leukemia advocacy platform
http://www.cmladvocates.net
Drivers
๏ฎ Public directory of CML groups
๏ฎ Advocacy platform for patient advocates
๏ฎ Capacity building, campaigns,
cooperation
๏ฎ 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
๏ฎ Molecular pathways
๏ฎ Genome sequencing,
๏ฎ Translational research
๏ฎ Personalized medicine,
orphanisation
๏ฎ HTA (& QoL)
๏ฎ Healthcare budgets
vs drug pricing
12. Patients' orgs: key role in building
new R&D environment
๏ฎ Patient organisations have unique insights
in โreal lifeโ and โreal needsโ of patients:
โข Gap analysis in research priorities
โข Clinical trial design
โข Priority setting in healthcare budgets
Driving force
โข Research policy
Co-researcher
Reviewer
๏ฎ 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
๏ฎ Great individual initiatives to train patient
advocates, led by patient organisations,
academia, industry
๏ฎ Complemented by:
The Patientsโ Academy โ 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
๏ฝ develop and disseminate accessible, well-structured
and user-friendly information and education on
medicines R&D
๏ฝ build expert capacity by training patient advocates
๏ฝ create the leading public library on medicines R&D:
7 languages, โcreative commonsโ license
๏ฝ facilitate patient involvement in R&D to support
industry, academia, authorities and ethics committees
15. Training areas of European
Patientsโ 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)
๏ง Academic Modular Certificate Programme 100
๏ง Patient Ambassadors. Patient patient
Journalists, Patient Trainers advocates
EUPATI Educational Toolbox (๏ education)
12.000
๏ง Tool box with a variety of distributable formats patient
๏ง Paper-based booklets, presentations,
eLearning, webinars, videos etc. advocates
EUPATI Internet Library (๏ information)
๏ง Wikiโ โYouTubeโ Social Mediaโ Internet 100.000
Sources (Editorial Board)
๏ง TV films and/or cartoons individuals
17. Summary
๏ฎ The โWalled Gardenโ does not exist:
A new generation of e-patients communicate, learn and
manage their health
๏ฎ Patients are key partners in providing key information
and accelerating safer and more targeted research
๏ฎ The European Patientsโ Academy is the key pan-EU
initiative to empower โpatients in researchโ
18. www.patientsacademy.eu
Twitter: @eupatients
as well as:
Jan Geiรler
๏ฎ jan@patientsacademy.eu
๏ฎ Twitter @jangeissler
๏ฎ LinkedIn, Facebook,
Twitter