"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.

1. How Patient
(Advocates)
discuss Clinical
Research on the
Internet
Jan Geissler
EUPATI
CML Advocates Network
Leukaemie-Online

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

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