"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.
2. Having cancer,
access to information is crucial
• Cancer patients need to take
informed decisions.
1. Understand the disease
2. Find the right doctor
3. Find other patients
4. Understand & consider trial participation
5. Decide on therapy
6. Know about interactions, adherence,
CAM use, QoL
3. 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)
4. "Informed Patients"?
• Healthcare systems do
not incentivize detailed consultation:
12 minutes from door to door!
• Non-medical/legal language barrier
• Lack of information for patients
with rare diseases
§+ +
5. The myth of the walled garden:
Google won‘t go away
Bad information can
only be displaced by
good information,
not by laws, codes - or
by staying away.
• Regulators and
politicians still live the
myth of a „walled
garden“
Source: Sunbury Park, Sunbury-on-Thames
6. 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: almost all patients have
access to online information
– Elderly through their friends
and relatives
– Source: “EU EuroBarometer Report on Patient
Involvement, May 2012”
7. Strengthend by Social Media: Major
(r)evolution of Patient Advocacy
Information and support
• Grass-roots platforms on
treatment, trials, side effect management
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
8. Example CML Advocates Network:
global leukemia advocacy platform
Drivers
• Public directory of leukemia groups
• Advocacy platform for patient advocates http://www.cmladvocates.net
• Capacity building, campaigns,
cooperation, own research
• Key enabler: Social Media
Grassroots network, founded 2007,
today 66 patient organisations
in 53 countries
9. Example Leukämie-Online:
Vivid online patient community
• Patient-driven, non-profit social media platform
launched in 2002
http://www.leukaemie-online.de
• >900 news articles on news
from clinical trials, research and
disease management
• >18.000 forum messages,
discussing
– living with leukemia
– study results
– new clinical trials
– Side effect management
10. Opportunities improving informed
consent
• Patient-driven
optimization
of informed
consent
• ToC, Glossary,
study flow chart,
terminology,
video
EudraCT-Nr. 2010-024262-22, „TIGER“ Study in CML
11. Adverse event reporting:
Example ACOR
• Osteonecrosis of the Jaw (ONJ) reported in 2 studies of
Zometa (2003,2004)
• ACOR Myeloma group started telling members talking
any bisphosphonates they should avoid any invasive
procedure to the jaw - tooth extraction a common trigger
• IMF used Myeloma list to conduct survey. 904 members
responded in 30 days, captured data for diagnosis,
treatments & complications
• Results published at ASH, FDA ODAC & NEJM
(Durie, Katz, Crowley; 07/07/05, p99)
Source: Gilles Frydman, ECCO 2011
12. Patients sharing PRO and trial results:
Fiction? No, reality. Also in Europe.
• Find other patients with rare diseases with similar
symptoms, side effects, trials
• Track QoL,
symptoms,
side effects
• “Dirty registry”
13. Patients' orgs: key role in building
new R&D environment
• Patient organisations have unique
insights into „real life“ and „real
needs“
– Gap analysis in research priorities
Driving force
Driving force
– Clinical trial design
Co-researcher
Co-researcher
– Priority setting in healthcare budgets
Reviewer
Reviewer
– Research policy
Advisor
• Training of advocates required to get
expertise required to contribute to Info provider
scientific projects Research subject
Source: PatientPartner FP7 Project (2010),
http://www.patientpartner-europe.eu/
14. The Patients’ Academy: Paradigm shift in
empowering patients on medicines R&D
Launched Feb ’12, runs for 5 years,
29 consortium members,
PPP of EU Commission and EFPIA
will develop and disseminate
objective, credible,
correct and up-to-date public
knowledge about medicines
R&D
will build competencies
& expert capacity among patients & public
will facilitate patient involvement in R&D to support
academia, authorities, industry, ethics committees
Source: EUPATI,
www.patientsacademy.eu
15. Areas covered 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) …and NOT:
develop indication-
6. Patients roles & responsibilities in
or therapy-specific
medicines development information!
16. Summary
• The „Walled Garden“ does not exist:
Today’s e-patients communicate, learn and manage their
health – and discuss about clinical trials
• The patient is the most underutilized resource of the
healthcare system. Let Patients Help!
• Patients are key partners in providing key information
and accelerating safer and more targeted research
• EUPATI - the key pan-EU initiative to empower “patients
advocates in research”
17. www.patientsacademy.eu
Twitter: @eupatients
as well as:
Jan Geißler
jan@patientsacademy.eu
Twitter @jangeissler
18. Disclaimer
The views and opinions expressed in the following PowerPoint slides
are those of the individual presenter and should not be attributed to
Drug Information Association, Inc. (“DIA”), its directors, officers,
employees, volunteers, members, chapters, councils, Special
Interest Area Communities or affiliates, or any organization with
which the presenter is employed or affiliated.
These PowerPoint slides are the intellectual property of the individual
presenter and are protected under the copyright laws of the United
States of America and other countries. Used by permission. All
rights reserved. Drug Information Association, DIA and DIA logo are
registered trademarks or trademarks of Drug Information
Association Inc. All other trademarks are the property of their
respective owners.
