What Members Tell Each Other About Clinical Trials

By Kathleen Hoffman, PhD MSPH

“Failing to enroll a sufficient number of subjects in a trial is a long-standing problem”1 but understanding the factors impeding enrollment can be difficult. Public posts on social media are an effective resource for understanding how patients feel and what they understand about clinical trials.

On Inspire, “clinical trials” are a popular topic. Close to 58,000 posts mention clinical trials. A cursory search of Inspire postings show the diversity of opinions and understandings: some member posts provide solid information, some members post incorrect assumptions about clinical trials, and still others make statements that are not true of all studies.


Almost 9,000 posts mention “placebo.” Some perpetuate the fallacious belief that patients with advanced cancers who enroll in clinical trials receive no treatment at all. One member said she’d been in a clinical trial where she was sure she received a placebo and her cancer then metastasized, but another member in the same thread reassured readers that

“Second arm receives the standard of care. There cannot be no treatment for cancer patients.”

Over 3,000 posts still use the term “guinea pig,” including a member who said,

“I… don’t want to be a guinea pig for some research[er].”


There’s conflicting information: One member enthusiastically stated that,

“One of the benefits of trials is that all care is covered,”

while another’s experience was that the medication was covered but insurance would not cover the cost of doctor’s visits or scans. Again in a different set of posts, a member titled their entry, “Clinical trials have been my life saver,” while a different member said the drug he received in a clinical trial “cause[d] my immune system to almost totally destroy my kidneys.”

In contrast, some information is straightforward and leads to a particular trial. For example, one member’s post contained the direct link to a clinical trial, added his knowledge about where the trial was being conducted in his state, and gave a contact number at the research facility for people who were interested in more information. Other members create journals that chronicle their direct experience as participants.

What Doctors say

In April 2019 Judy Perkins, the first metastatic breast cancer patient to be cured of breast cancer, shared her experience of the clinical trial that saved her life in an interview for the Cancer Research Institute.

“I understand that one of the challenges we face in bringing new treatments to patients, is accruing patients in clinical trials. During my cancer journey, I had an interesting experience with my local oncologist who tried to dissuade me from participating in clinical trials. He said to me, “Do you know how much money they make off of you?” I was astounded that a trained oncologist would harbor such an uneducated opinion. I saw him again after being improbably cured and I think my results caused him to see clinical trials in a new light.”2

Physicians, as credible information sources for patients, can negatively impact clinical trial recruitment. As Perkins said,

“if this mentality is widespread in local oncologists, it is a grave barrier to patients who will remain unaware that clinical trials may be an option for them, and for researchers trying to accrue patients to trials.”2

Perkins chronicled her experiences in social media as a member of Inspire years before this interview.

What’s Really Happening

Public social media postings can be a resource to learn what patients and caregivers experience in their daily lives. It provides access to patients who do not usually participate in research, like patients located in rural areas at great distance from research sites. As patients share and support each other online, discussing diseases, treatment options and emotions, they use their own lexicon.

This blog post shares a smattering of the Real World Data (RWD) that is present in public postings on social media about clinical trials. But, to truly obtain insights to answer questions, Inspire employs Natural Language Processing (NLP) and sociolinguistic analysis. Using these tools iteratively, researchers carefully anonymize posts and group data into clear insights to understand what is really happening to patients. Gleaning their opinions, beliefs, experiences and language can provide guidance on how to talk to them about a difficult, complicated topic like clinical trial enrollment.

To learn more about transforming real world data, like public social media postings, to real world evidence download our most recent webinar.

Download this webinar, “An Im-patient Voice: Transforming Real World Data Direct from Patients into Real World Evidence.” 

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