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

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 pharmaceuticalcompanies 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


Lessons of cachexia study •  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

[email protected]

@brianloew

beyond privacy: social media’s ethical responsibility to the clinical trial patient

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