overview of work done to test the idea that 'social media contains discussion relevant to experience with medicines'. Originally presented at 'Biostatisticians and Data Scientists working together in service of patients', Churchill College Cambridge, 2015-03-18 a joint Astrazeneca & Medical Research Council Biostatistics Unit event. http://www.eventbrite.co.uk/e/biostatisticians-and-data-scientists-working-together-in-service-of-patients-tickets-15197628516

1. We d n e s d a y 1 8 t h M a r c h 2 0 1 5
AZ & MRC-BSU joint Science Symposium 2015
The combination of easy to use technology and
almost constant connectivity creates an
opportunity for a number of people to pass
comment on any aspect of their experience. This
relatively uncensored2, almost stream-of-
consciousness, commentary is a source of insight
into the experiences of a substantial number of
the 200 million people we seek to help with our
medicines.
Today’s social media is a technological and
cultural expansion of an earlier wave of ‘blogs’3.
As well as conducting insight interviews, we read
some of the blogs of a handful of tech-savvy,
motivated people with breast or ovarian cancer.
What we learnt influenced our work and
attitudes. It was an additional source of insight
that offered current access to their experiences.
All the comments shared were unprompted so
we could assume they were honest rather than
modified for e.g. an interviewer working for a
large pharmaceutical company.
The diversity and candid nature of these online
exchanges offers us a potentially valuable source
of patient insight.
Social Media Analytics
Social Media Analytics: harnessing big data for
decision making
Social media such as Twitter, Facebook, discussion boards and blogs
created specifically for patients and healthcare professionals, generate a vast
number of conversations around specific diseases, drugs, and treatments.
There are many ways that the analysis of social media can benefit decision
making in the drug development pipeline. Not least, providing a connection to
patients, their journeys and what their health care providers and care givers
say.
Pharma and other industries have focused on brand sentiment and the
support of commercial purposes – e.g. brand perception, sponsored
communities, cost of medicines, and patient awareness and education.
The output of social media analysis could be used to supplement our
understanding of disease burden, unmet medical need, willingness of
patients to participate in clinical trials, strategies for expansion of market
access, and potential spontaneous usage and thus be used to support
development decisions.
Christopher Hart, Rob Hernandez, Sherri Matis-Mitchell
Social media contains the expressed thoughts of
many of our (potential) customers
3The Brief History of Social Media
Dr. Anthony Curtis, Mass Communication Dept., University of North
Carolina at Pembroke
http://www2.uncp.edu/home/acurtis/NewMedia/SocialMedia/Socia
lMediaHistory.html
2The Brave New World of Social Media Censorship
How "terms of service" abridge free speech
Marjorie Heins
http://harvardlawreview.org/2014/06/the-brave-new-world-of-
social-media-censorship/
‘Big Data’ are surprisingly manageable
Using a commercial social media analytics platform made this work possible.
Selecting the sources for analysis, the keywords of interest, filters, and then
training the machine took a few hours’ effort. We could see results quickly
from the first build. After a few days of review we were able to further tune
the monitoring software.
Using the ForSight™ platform by Crimson Hexagon1 we explored social
media posts relevant to Non Small Cell Lung Cancer (NSCLC). We wanted to
determine the feasibility of seeing what patients said about treatments for
NSCLC.
1Crimson Hexagon
155 Seaport Boulevard (Seaport West Building) - Third Floor
Boston, MA 02210
http://www.crimsonhexagon.com/
Twitter had the largest volume of
posts. Twitter also had the lowest
‘sound to noise ratio’ despite ‘bot
filtering by Twitter. Twitter had
good temporal resolution of
information though. Peaks of
Twitter activity around the large,
international, meetings e.g. ASCO
preceded forum-based discussion
of announcements. In some cases,
Twitter-based exchanges were
quoted within blog posts and
discussion board exchanges.
The advantages of using an
aggregator include:
•1 agreement for content access and
usage rights
•A large volume of historical data
•1 tool to use
•Relevant analytical tools accessible
•Platform expertise available
We explored data aggregated from
several sources including:
•Twitter
•Facebook
•Cancer discussion boards
It worked. We should do more.
We succeeded in our aim to determine whether people shared potentially
valuable insight publically online. We found sharing of experiences,
concerns, interests, and study participation.
Michael Zimmer poses the question: “[is it] ethical for researchers to follow
and systematically capture public Twitter streams without first obtaining
specific, informed consent by the subjects?” 4
It is likely that the argument will iterate without definitive resolution. The best
approach is to be open about the fact that we must listen to patients in order
to deliver valuable medicines. Not listening is not an option.
On the day we shared our research, Craig Lipset5 had a column in Nature
“...participants in clinical trials are sharing information about their health
online. It's time that the drug development community starts to examine how
this social media use might compromise the integrity of research studies and
how it might also offer new opportunities.”
In a recent Tufts white paper6, a picture of caution and interest emerged:
•Top cited concerns include introducing research bias (e.g., falsifying
eligibility; un-blinding treatment assignment) and distorting adverse event
experience associated with study drug.
•Nearly all participating companies (13 of 14) believe input from social media
communities would greatly improve the feedback they receive on program
planning and protocol design feasibility.
•In a companion Tufts CSDD survey of patients, 22 of 27 said sponsors
should solicit feedback on protocol procedures and scheduling.
•None of the companies participating in the working group are using social
media to solicit patient feedback on development plans and protocol designs.
It is possible that pharmaceutical company marketing departments may be
defining the new frontier of social media whilst R&D misses out.
4Is it Ethical to Harvest Public Twitter Accounts without Consent?
Michael Zimmer, PhD, Associate Professor in the School of Information
Studies at the University of Wisconsin-Milwaukee, and Director of
the Center for Information Policy Research.
http://www.michaelzimmer.org/2010/02/12/is-it-ethical-to-harvest-public-
twitter-accounts-without-consent/
6Industry Usage of Social and Digital Media Communities in
Clinical Research
A Tufts Center for the Study of Drug Development White Paper
June 2014
http://csdd.tufts.edu/files/uploads/TCSDD_Social_Media_Final.p
df
5Engage with research participants about social media
Craig H. Lipset is head of Clinical Innovation for Worldwide Research &
Development at Pfizer in New York, New York, USA.
http://www.nature.com/nm/journal/v20/n3/full/nm0314-
231.html?_sm_au_=icVlkRBTqRmrS65P