Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient

This document is conﬁdential 1
Beyond Privacy: Social Media’s
Ethical Responsibility to the
Clinical Trial Patient
Brian Loew, CEO, Inspire
July 9, 2014

Our goal today
To examine the ethical responsibility of the
researcher to protect the privacy of research
participants and protect personal health
information when using social media, and
discuss the roles and considerations of patients,
medical professionals and other parties
regarding these responsibilities.

Challenges in enrollment
and retention

A limited window of opportunity

Reaching patients

About Inspire
A social network, organized by health
condition, that connects pharmaceutical
companies with patients and caregivers
in a safe, permission-based manner.
•   500,000 members (+12K/month)
•   208 health communities
•   105 advocacy partners
•   2,500,000 visits/month
•   6,661,000 posts (+4K/day)
•   950,000,000 words

Discovery

“If I become known as a cancer patient involved in a certain
trial, it's my own doing. I waived my right to privacy.”
“During my consultations with the trial doctor, he is careful
not to mention any names of other patients in the trial. He
speaks in generalities, such as "a Japanese woman" or ‘a
man in his 40’s.’"
“Unless specifically granted permission IN WRITING by a
patient, the research professional should always assume
privacy is of utmost importance to a patient.”
—New Mexico woman, never-smoker, with stage IV lung
cancer who is now in a clinical trial
Patient Perspectives

“I recall that, after my debulking, (my doctors) wanted
me to enter a trial involving Avastin. The consent form
was many pages and listed all possible adverse
effects of the drugs I'd be given. I researched it
independently, found Avastin had about a 5% risk of
perforation, which, if that happened, had about a 50%
death rate. I decided not to do it. Even though I've
recurred twice, in almost four years, I've still not used
Avastin. It will be saved as a last resort and option.”
—Woman with ovarian cancer
Patient Perspectives

Perspectives of cancer patients
“In the end, we are the ones who own our cancer.
Stop worrying about being 'nice.'”
—Male lung cancer survivor

Perspectives of cancer patients
“Even though I was in remission, I chose to
do this (clinical trial) because I have a
daughter and 4 granddaughters. I loved the
idea, no matter how remote, of being part of a
study that might mean the end of OC.”
- Texas woman, 67, with ovarian cancer

“If and when they do the genomic study, the results are
NOT medical history... but they are.. They are research
data...We do not have access to that stuff...None of
us...Not yet.
“My oncologist...of course is sort of meh about it
because the data is just data. There isn't a lot of
actionable stuff to do with with it.. She does agree that
this sort of donating blood and not getting any of the
results is the way of the past.. It just isn't terribly ethical.”
I understand that the data is really just data today,
but that one day it just might be the key to survival.”
“The key to survival”

“I don't understand why it takes so long. I
signed the papers for this trial on June 7,
completed my 'cleanse' on June 18, Needle
Biopsy on June 19, and was informed
yesterday that now we can schedule the
screening…No one mentioned any additional
screening… I am antsy and what to start,
don't want the cancer to have anymore time
left unattended.”
--Female lung cancer patient
“Why does it take so long?”

“We don't like a day going by in which we are not
on the attack.”
“My hubby had an unsuccessful biopsy...He’s
going to have 1 week of radiation to hopefully get
rid of some fluid buildup in the pleura area. I was
just told they aren't sure if a repeat biopsy will be
doable after the radiation. The oncologist now
seems to want him to try regular chemo instead.
We were both so excited to get into the trial and
now I don't know if he ever will...”
Perspective from others

One member in cancer support community
tried to enroll in a Phase III trial in early 2014,
but was excluded Researchers did full
sequencing of mutations of her tumor but did
not release that data to her.
“My tumor sample was completely done, and
the data is part of the genomic study that is
going on. Why don't I just have access to
this? I am afraid it was an incredibly upsetting
experience.”
Patients expect access to data

“Did you sign anything saying you know you
won't get access to your test results if you
weren't accepted into the trial? You know,
those multiple pages in size 3 font we sign
before we sneeze? If you kept a copy of what
you signed, maybe you could get a better
handle on how to access your results. This
has had to happen before in various trials by
those not accepted.”
--Fellow member of cancer support group
Words of encouragement

“The medical information belongs to you. I
just don't get it. Demand it.”
--Fellow member of cancer support group
Words of encouragement

What patients want

Lessons of cachexia study
Overall, caregivers noted symptoms
to be at higher rates than patients,
while patients were much more willing
to participate in supportive care trials
to evaluate novel methods to manage
symptoms.

Perception of symptom severity by Stage IV NSLC patients & their caregivers

•  Patients more open than caregivers to
patients participating in palliative care
clinical trials
•  Indicates that even seriously ill patients
are open to research — they place
value in finding a way to help others,
and/or serving purpose.

Thank you
Brian Loew, CEO, Inspire
brian@inspire.com
@brianloew

Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient

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Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient