Re-Huminizing the Research Enterprise (G. Frydman)

1. Gilles Frydman, 2018The Social Media & Clinical Trial Workshop
NCI, June 7, 2018
RE-HUMINIZING THE
RESEARCH ENTERPRISE
Through Art And Social Media

2. From Portrait Maker To Patient Advocate, And Back

3. Multiple
Medical
Emergencie
s
Experimental Open
Heart Surgeries
Breast Cancer
Diagnosis

4. • Internet in 1995:
40 Million
Worldwide Users
& Primitive Search
Engines.
• Facebook in 2018:
Over 2 Billion
Members (60
times bigger than
95’ Internet)

5. Started in 1995
Grew up rapidly
> 200 Communities
Served over 1 million
users
ACOR:
Major System
of Cancer
Online
Communities

6. Research On Online Communities

7. Deindividuation
Impaired Agency
Dissimilarity
Causes Of Dehumanization In Medicine

8. “Patient” On Google: Impaired Agency

9. “Clinical Trials” On Google: Deindividuation

10. “Clinical Trial Patient” On Google: Dissimilarity

11. “Science and communications are
always inextricably entwined. From
research to the patient, the
imperative to communicate
deepens.
Communication empowers,
enlightens, soothes, clarifies life
and death…”
— Dr. Richard Klausner, Former Director, NCI

12. Art/Photojournalism Social Media Campaign

13. Cystic
Fibrosis: An
Incurable &
Always
Fatal
DiseaseIvacaftor:
Revolutionized CF
Treatment for
Specific Gating
Mutations

14. Metastatic ALK-
Driven
Non-Small Cell
Lung Cancer: An
Incurable &
Usually Fatal
Disease
Targeted Therapies
(ALK inhibitors):
Profoundly Changed
OS For Tx
Responders

15. Metastatic
CML: An
Incurable &
Usually
Fatal
DiseaseSTI-571(Imatinib),
1st Successful
Targeted Therapy:
Revolutionized
Cancer Treatments

17. The Reality: Music Video, 5 Bn Views In 16 Months!

18. The Sad Reality: CNN 7.5K Views In 4 Years!

19. 5 Take-Away Points
• For cancer patients, having access to all information about
existing treatments can easily make the difference between life
and death
• Clinical trials are just another form of treatment, just better
• Social Media is a powerful tool to disseminate accurate &
current scientific information, including clinical trials
information, to patient groups
• General lack of minority representation in academia, medicine
and online groups only perpetuates inequalities in clinical
research. It MUST be a national priority
• Art helps re-humanize clinical research by putting human faces
in front of collaborative efforts in science and often obscure
discoveries