"The e-patient: empowered or overwhelmed? Patient's perspective on new technologies", presented by Jan Geissler at EFGCP Annual Conference 2013 on "Virtual Future: Ethical dimensions of emerging technologies in clinical trials and research" on 29 January 2013 in Brussels

1. The e-patient:
empowered or overwhelmed?
Patient's perspective on new technologies
Jan Geissler
EFGCP Annual Conference 2013
Director, European Patients’ Academy on Therapeutic Innovation (EUPATI)
Co-founder, Leukemia Patient Advocates Foundation & LeukaNET
Secretary, European Forum For Good Clinical Practice (EFGCP)

2. The rollercoaster
patient journey
 Time is of essence
 Taking tough decisions
quickly is difficult

3. Having a life-threatening disease,
taking informed decisions is crucial
1. Understand the disease
2. Find the right doctor
3. Find other patients
4. Consider trial participation
5. Decide on therapy
6. Know about interactions, adherence,
CAM use, QoL

4. "Informed Patient"?
 Healthcare systems do
not incentivize consultation:
9.1 minutes from door to door…
 Medical/legal language barrier
§+ +

5. Lack of information is a key
healthcare problem
 Miscommunication and
double effort
 Suboptimal treatment,
lack of adherence
 Interactions with CAM
 Lack of trial participation

6. Only more transparency can overcome
public scrutiny on research
 Only 6-12% of cancer patients
?
participate in clinical studies
 75% of all phase II-IV studies are
delayed due to lack of recruitment
 Bad public image
 Delayed generation of data
 Slow progress
 Research
 India, China

7. 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”

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

9. Social Media is a doctor's key source
of health information as well
Physicians online - % of content destinations when using the web
Source: Comscore (2010)

10. Regulators & politicians still believe in
the myth of the walled garden
Google will stay.
Bad information can
only be displaced by
good information,
not by laws,
codes or warnings
Sunbury Park, Sunbury-on-Thames

11. Doctors & patients:
the importance of partnership
 Let's stop complaining.
"Googled Health" is reality.
• There's nothing wrong in "I do not
know. I need to find out."
• Unblinding of randomized trials on
the Internet was reality 10 years ago
• Not finding a trial on Google will
lead to scrutiny: "what is wrong?"
 Shared decision making &
increased literacy will improve
outcome & efficiency
From the article "Be a Boss Babe: Why Your Doctor
Disliking You is a Good Thing" by April Ricchuito

12. Adverse event reporting:
Example ACOR lists
 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

13. Patients sharing PRO and virtual trials:
Fiction? No, reality. Today.
 Find other patients with rare diseases with similar
symptoms, side effects, trials
 Track QoL,
symptoms,
side effects
 “Dirty registry”
 Soon in
EU too!

14. Self-reported, patient-driven QoL data
accelerating clinical discovery
 “the first real-time, real-
world, open and non-
blinded, patient-driven trial”
 …"Although observational
studies using un-blinded data
are not a substitute for double-
blind randomized control trials,
this study reached the same
conclusion as subsequent
randomized trials”
 …”Accelerating clinical
discovery and evaluating the
effectiveness of drugs already
in use."

15. E-Patient: empowered, not overwhelmed!
 The „Medical walled Garden“
has been a myth for 10 years already.
 Today’s e-patients communicate, learn, manage their
health – and discuss about clinical trials.
 "Roles are not only shifting but they are flipping around."
Doctor-patient communication  partnership
 The empowered patient is the most underutilized
resource of the healthcare system & more targeted
research

16. Thank you!
Jan Geissler
jan@patvocates.net
Twitter @jangeissler