Will global HCPs networks become
communities of choice for rare-
disease specialists?
The global neuroendocrine tumour community
Len Starnes
Digital healthcare consultant
Berlin
Ilan Ben Ezri
CEO & co-founder
G-Med

1
Rare diseases and
the social media
imperative
Why is G-Med
home to the global
NET specialists’
community?
2
The global
NET specialist
community in practice
3
4
Conclusions

Rare diseases and the
social media imperative
https://de.pinterest.com/pin/384002305703647367/ource???? http://www.rarediseaseday.org/

What is a rare disease?
http://www.rarediseaseday.org/
Affects fewer than
1 in 2,000 (EU definition)
One may affect a
handful of patients,
another 200,000
6,000 – 8,000
have been identified
350 million people
worldwide may be
affected
Most are
genetic in origin
Effective
cures are rare
https://globalgenes.org/rare-diseases-facts-statistics/
http://www.eurordis.org/

International cooperation is widely
viewed as essential to drive
progress in the management of
rare diseases
Due to the rarity and diversity of
rare diseases, research needs to be
international to ensure that experts,
researchers and clinicians are connected…**
**http://www.rarediseaseday.org/article/
what-is-a-rare-disease
*http://www.eurordis.org/sites/default/files/
publications/Fact_Sheet_RD.pdf
How can things change?
By increasing international cooperation
in scientific research*
’’
’
‘
‘

Rare disease specialists are rare
http://www.rarediseaseday.org/
https://globalgenes.org/raredaily/rare-parenting-do-good-
rare-disease-doctors-exist/
Practicing physicians rarely
see rare disease patients
International networking is essential to
bring specialists and practicing physicians
together to collaborate and
share expertise

Among top barriers physicians face
to offering quality care to rare
disease patients…
Not enough opportunities
to network with other physicians
who treat rare diseases
54%
US physicians agree
62%
UK physicians agree
Source: Rare Disease Impact Report: Insights from Patients and the Medical Community, Shire 2013
https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf

For over 10 years HCPs social
networks have been communities
of choice for doctors to meet,
collaborate and exchange opinion
https://www.slideshare.net/lenstarnes/0-years-of-doctors-social-
networks-what-have-we-learnt-what-can-we-expect
https://www.linkedin.com/pulse/10-years-doctors-social-
networks-what-have-we-learnt-can-len-starnes
Why 5.5 million doctors worldwide are members:
Easy access to peers
Fast feedback on clinical problem solving
Specialist discussion fora
Ability to tap into community wisdom

Now global HCPs social networks
have emerged offering compelling
new cooperation opportunities for
doctors treating rare diseases
*Oberg K, Castellano D: Current knowledge on diagnosis and
staging of neuroendocrine tumors. Cancer Metastasis
Rev 30:3-7, 2011 (suppl 1)) CrossRef, Medline *http://ascopubs.org/doi/full/10.1200/JGO.2015.002980
Neuroendocrine tumours (NETs)
Is a rare disease with an estimated
global prevalence of 35 per 100,000*

Steve Jobs
was a rare disease patient…and the
most famous neuroendocrine
tumour patient
Steve Jobs died of a
neuroendocrine tumour
of the pancreas
5th October 2011
https://netrf.org/pancreatic-neuroendocrine-cancer-vs-
pancreatic-cancer/

Why is G-Med home to the global
NET specialist community?
Global HCPs’
social network
www.g-med.com

The G-Med network
straddles national borders
Launched
2014
Members from
50 countries,
mainly EU & USA
100,000
physician
members
Rigorous membership
authentication process

The G-Med community is active
and collaborative
60 specialities plus
multi-disciplinary
groups
23,000 posts,
comments, articles
published 2016
Members spend
2,500 hours/month online
1,800 average
views per post

G-Med supports live-video social
networking
Collaboration options
Live-video peer-to-peer discussions
Virtual conferencing
Expert panels enabled via live video
and/or real-time forum posts
Webinars, created by community
members, live and on-demand
Surveys and polls

60 medical speciality channels
Anesthesiology Otolaryngology & Head and Neck Surgery
Cardiology Pain Medicine
Cardiothoracic Surgery Pathology
Critical Care Medicine Pediatric Critical Care Medicine
Dental Pediatric Dermatology
Dermatology and Sexual Health Pediatric Emergency Medicine
Developmental and Behavioral Pediatrics Pediatric Endocrinology
Emergency Medicine Pediatric Gastroenterology
Endocrinology, Diabetes, and Metabolism Pediatric Hematology - Oncology
ENT and Head - Neck Surgery Pediatric Infectious Diseases
Family Medicine Pediatric Neurology
Forensic Medicine Pediatric Orthopedics
Gastroenterology Pediatric Pulmonology
Genetics & Metabolic Diseases Pediatric Radiology
Geriatric Medicine Pediatric Rehabilitation Medicine
Hematology Pediatric Rheumatology
Hepatology Pediatric Surgery
Immunology and Allergy Pediatric Urology
Infectious Disease Pediatrics
Internal Medicine Physical Medicine and Rehabilitation
Neonatal and Perinatal Medicine Plastic Surgery
Nephrology Psychiatry
Neurology Pulmonology
Neurosurgery Radiation Oncology
Nuclear Medicine Radiology
Obstetrics and Gynecology Rheumatology
Oncology Sports Medicine
Ophthalmology Surgery
Oral and Maxillofacial Surgery Urology
Orthopedics Vascular Surgery

Examples of multidisciplinary
groups & virtual conferences
Family, Psychiatry, Neurology, Pediatrics
OBGYN, Oncology, Family, Pediatrics, Infection
Family, Internal Medicine, Endocrinology
Neurology, Geriatrics, Family disorders
Urology, Family, Endocrinology, Cardiology
Oncology, Endocrinology, Surgery, Pathology
OBGYN
Dermatology, Immunology, Family
Hematology, Oncology
Family, Psychiatry
Geriatrics, Family, Neurology
Rheumatology, Orthopedics, Pain, Family
Rheumatology, Dermatology
Immunology, Dermatology, Family
ADHD
HPV
Diabetes
Movement disorders(Parkinson's)
Sexual Dysfunction
NET
Ultra sound
Psoriasis
Multiple Myeloma
Depression
Alzheimer
Pain
SpA
Urticaria
Activity Specialties involved

G-Med supports 4 global rare
disease specialists groups
Urticaria
4,100 members
Multiple myeloma
3,720 members
Autoinflammatory
diseases
Starting soon
Neuroendocrine
tumours (NET)
4,372 members

The NET
specialists’
community
in practice

Number of
participants:
4,372
Leading specialities:
oncology,
endocrinology,
surgery, pathology
Number of
countries:
28
Number of
participating
specialities:
9
Av group
viewing time:
4:32 min
Av no of readers
per case study:
2,720
Av no of readers
per post:
2,547
Av no of views
per video:
2,315
G-Med NET group statistics
demonstrate global reach

Community is over 3x larger than
membership of the European
Neuroendocrine Tumour Society
*Status May 2017 : http://www.enets.org/aims_misson.html
0
500
1000
1500
2000
2500
3000
3500
4000
4500
5000
Category 1 Category 2European
Neuroendocrine Tumour Society
(ENETS) membership 2017
G-Med global NET specialists’
community membership
2017
1,200*
4, 372**
**Status May 2017: G-Med
G-Med & ENETS members
embrace specialists in: oncology,
endocrinology, gastroenterology,
pathology, radiology, nuclear
medicine, surgery

G-Med NET group uses a wide
range of collaborative and
interactive features
Patient case studies
Presented by multidisciplinary
experts: oncologists,
endocrinologists, pathologists,
surgeons
Examples
Challenging and unusual patient
cases, surgery dilemmas,
suggested management
consultations, treating very old
NET patients , co-morbidity
patients, pathology analysis
dilemmas

On-demand
expert video presentations
Live video peer-to-peer
NET consultation rooms
Virtual conferencing:
webinars created by community
members, live and on-demand
G-Med NET group uses a wide
range of collaborative and
interactive features

NET Imaging and
pathology slides sharing
G-Med NET group uses a wide
range of collaborative and
interactive features

NET medical news
New publications
ENETS Guidelines
FDA approvals
NET events
Invitations
Registrations
Summaries and highlights
G-Med NET group uses a wide
range of collaborative and
interactive features

NET surveys &
opinion polls
G-Med NET group uses a wide
range of collaborative and
interactive features

Column1
39%
Case reports
35%
KOLs interactive
advisory board
video conferences
22%
Recorded
video
lectures
4%
NET news
G-Med survey question: Which topics would you like to see
more of in the international NET group?
Case reports most popular topic

Column1
80%
of comments/answers
concerning patient case
reports are received within
the first 48 – 72 hours
following the request
Discussion frequently
continues months after
the request
Case reports trigger rapid responses
to requests for 2nd opinion
Average no of readers per
case study: 2720

Column1
35%
Highly
44%
Very
17%
Moderately
4%
Marginally
G-Med survey question:
How satisfied are you with
the international NET group?
Almost 80% very high or high
satisfaction rates

Column1
35%
Beneficial
43%
Highly
beneficial
13%
Moderately
beneficial
9%
Not beneficial
G-Med survey question:
Do you find the international
NET group beneficial to
knowledge sharing and
networking?
Almost 80% rank highly beneficial
or beneficial

Conclusions

Based on the evident success on the
G-Med NET community, global HCPs social
networks provide an ideal platform for
rare disease specialists and practicing
physicians to connect, collaborate and
disseminate medical expertise in real-time

Medical societies such as ENETS are
unlikely to provide comparable global
social networking platforms within the
foreseeable future*. As of May 2017,
ENETS does not have any social media
presence whatsoever
*https://www.linkedin.com/pulse/10-years-doctors-social-
networks-what-have-we-learnt-can-len-starneshttp://www.enets.org/

Physical temporally-limited medical society
conferences such as the ENETS annual
conference cannot substitute for
continuous social media engagement
https://www.slideshare.net/lenstarnes/future-of-med-confs-
final-11-dec-2013

In future the utility of the global NET specialists’
community could be further enhanced through
opportunities for NET patients to share their
wisdom and expertise
Ronny Allen
neuroendocrine
cancer patient and
international advocate
https://ronnyallan.com/

Professor of endocrine oncology,
medical faculty of Uppsala University,
Sweden
Former vice-chairperson of the European
Neuroendocrine Tumour Society (ENETS)
Member of the ENETS advisory board
ENETS Life Achievement Award Recipient
2017
Global networking is important
for the further development of
the NET field
Kjell Öberg
‘
’

This presentation is part II of an analysis
of global HCPs social networks in the
management of rare diseases.
See comment on Linkedin Pulse:
https://www.linkedin.com/in/lenstarnes/recent-
activity/posts/

Ilan@g-med.com
T: + 972 50 40 44352
g-med.com
twitter.com/GMedPhysicians
facebook.comGMedPhysicians
Ilan Ben Ezri
CEO & co-founder
G-Med

lenstarnes@gmail.com
T: + 49 30 781 5513
M: + 49 172 1788253
Skype: lenstarnes
linkedin.com/in/lenstarnes
twitter.com/lenstarnes
slideshare.net/lenstarnes
Len Starnes
Digital Healthcare
Research & Consulting