NcXHF

MICHAEL A. THOMPSON
about public health issues such as vaccinations as well as understanding
the risk/benefıt of cancer screening, the complexities
of cancer treatments, the role of research in
medicine, and end-of-life decisions. In contrast, many physicians
feel, regarding doctors and social media, we are
“damned if you engage, damned if you do not.” 23
USE: EDUCATION NETWORKS
Beyond annual conferences and peer-to-peer communication,
social media has a potential role in informing patients,
families, and the public about hematology and oncology. At
the 2012 American Society of Hematology (ASH) Annual
Meeting and Exposition, Matthias Weiss, MD, and colleagues
in the National Cancer Institute (NCI) Myeloma
Steering Committee Accrual Working Group described the
substantial barriers to accrual to NCI-sponsored clinical trials
on multiple myeloma, 24 and subsequently identifıed strategies
to overcome those barriers at the 2013 ASCO Annual
Meeting. 25 One of those strategies was to “educate patients
and providers about the signifıcance of a new [clinical trial]
using social media.” Cynthia Chmielewski (@myelomateacher)
and I developed the #mmsm (multiple myeloma
social media) Twitter discussion group based on the example
of the breast cancer social media (#bcsm) and other groups.
Over the past 2 years, the following discussions have occurred
at our group:
• September 15, 2013: Online patient resources and smoldering
multiple myeloma (@VincentRK and @Myeloma_Doc)
• October 20, 2013: Induction; VRd versus CfzRd
(@myelomaMD)
• November 16, 2013: ECOG-ACRIN Meeting (@mtmdphd)
• January 26, 2014: Allogeneic stem cell transplant in myeloma
(@phari)
• February 23, 2014: Racial disparities in multiple myeloma
(@VincentRK)
• March 16, 2014: Clinical trials in multiple myeloma (@Myelomateacher)
• May 18, 2014: Can we cure multiple myeloma? (@Rfonsi1)
• June 29, 2014: Amyloidosis (@brendanweiss)
• July 27, 2014: Minimal residual disease (@DrOlaLandren)
• August 24, 2014: Multiple myeloma risk assessment
(@szusmani; transcript available at: ow.ly/AKVTJ)
• September 7, 2014: Crowdfunding for multiple myeloma
research (@mpatientmyeloma)
• November 23, 2014: Advocating for yourself and others
(@MyelomaTeacher)
Mrs. Chmielewski and I moderate and facilitate the health
care provider, patient, and advocate discussions. Further information
on how this started can be found on the ASCO
Connection blog. 26 Many patients with multiple myeloma
and thought leaders on this disease have contributed to questions
and discussions in a rapid push/pull of information exchange.
This would be diffıcult to perform with the same
input and availability before social media.
This, in part, may explain why physician conversations
about multiple myeloma on Twitter more than quadrupled
between 2012 and 2013. 27 Many other disease-specifıc support
groups use Twitter or Facebook to communicate. A Facebook
example is the page run by Dana Holmes titled,
“Asymptomatic ‘Smoldering’ Multiple Myeloma ‘aka’-SMM – Information
Exchange.” 28 Although clinicians cannot participate
in every online discussion group (and may not want to
participate in any), knowing they exist and what information is
exchanged can be enlightening. Many patients and advocates
are highly educated, highly informed, and can help drive public
perspective, funding, and clinical trial accrual.
USE: CROWDSOURCING/CROWDFUNDING
A group of highly informed patients (i.e., crowd) may help
brainstorm ideas (i.e., source) for drug development including
clinical trials (i.e., crowdsourcing). Additionally, patients and
the public may help fund research by crowdfunding. The concept
of “Can We Build A Kickstarter For Cancer?” has been explored
by Forbes as a way of funding a “virtual biotech” for a
single patient. 29 Oncology Times also asked, “Should clinical trials
be crowdsourced?” 29 and The Lancet Oncology looked at
“#trial: clinical research in the age of social media.” 31
Although not everyone is ready for these concepts, especially
those with established research funding via traditional
mechanisms, engaging with patient communities can help us
understand the patient perspective. An educated and engaged
public (via social media and in real life) is necessary
to sustain a national clinical trials infrastructure. This has
been embraced by the clinical trial cooperative group Alliance
for Clinical Trials in Oncology (@ALLIANCE_Org;
#AllianceNCTN) to crowdsource its cancer clinical trial concepts
from the general public. 32
The generalizability and utility of such social media efforts
will become clearer over time. Other medical crowdfunding
sites include Experiment, MedStartr, and (the now dead?)
Petridish. A patient advocate–central model of crowdfunding
with crowdsourced ideas vetted/curated by scientifıc and
patient advisory boards is underway with the Myeloma
CrowdResearchInitiative(MCRI,www.myelomacrowd.org/
mcri/). This hybrid approach may allow new ideas with
thought-leader input.
USE: COLLABORATION
Although patients may share medical information on social
media without legal ramifıcations, patient confıdentiality
complicates discussions among professionals. We lack a
strong Health Insurance Portability and Accountability Act
(HIPAA)-compliant mechanism for open online multidisciplinary
conferences/clinics (MDCs). For rare tumor types,
physicians have gone social with older media, such as the
2013 ASCO Annual Meeting presentation “A Model for
Multi-Institutional, Multidisciplinary Sarcoma Videoconferencing.”
33 At an institutional level, options include proprietary
applications such as Yammer or corporate email with
possible encryption. HIPAA-compliant online discussion fo-
208 2015 ASCO EDUCATIONAL BOOK | asco.org/edbook