E-patient Voices Can Inspire Change in Clinical Trials 1


The culture we will live in next month is a direct result of what people like us share today. The things we share and don’t share determine what happens next.”

 Seth Godin

In a recent post on his blog, successful marketer and entrepreneur Seth Godin says that we are what we share. He believes that sharing our stories and ideas takes courage, and that it is “a generous way to change your world for the better.”

The world of clinical trials is one that still could use some change. Many trials struggle to recruit patients, which hinders our ability to get important treatments to patients in a timely manner. The reasons for struggling enrollment are complex, but the root cause is often a lack of awareness. As an industry, we’ve undertaken various initiatives to increase awareness, but these initiatives have had limited impact to date. And maybe that’s because it’s not us who potential trial participants most want to hear. Instead, maybe it’s fellow patients.

Learning from Each Other

Patient stories have increasing importance in healthcare. Patients look to their peers for these stories when considering clinical trials and other healthcare options. And with greater sharing about clinical trials, patients might be more encouraged to consider or continue clinical trial participation. Reading or hearing about the experiences of others can take the fear and mystery out of clinical trial participation. Meanwhile, getting support and encouragement from peers can help patients keep going if it starts to seem too tough.

Clinical researchers have much to learn from patient stories as well. By hearing firsthand accounts of patient clinical research experiences, we can learn what’s working and what isn’t. And we can better understand the patient perspective so that we can improve the experience that we provide patients in clinical trials.

We’ve been fortunate to have people like Jeri Burtchell, Cathy Collett and others generously share their experiences with clinical trials and the healthcare system, in turn creating the kind of change Seth Godin alluded to in his blog post. Their valuable contributions have encouraged us to explore new and different patient perspectives as well.

Seeking New Patient Stories

It’s important for us to keep seeking out more and more patients who are sharing their clinical trial experiences online. To make clinical trial participation a universally positive experience, we need to listen to a diverse range of experiences, positive and negative, spanning across varied disease states, intervention types, and personal backgrounds. It’s important to seek out and elevate those voices, to increase the overall level of participation in trials, and bring more perspectives to clinical studies.

In the name of seeking out and elevating patient voices, we’d like to share a few patient stories that we’ve come across on the web.  The fact that we can learn about and be inspired by their experiences on-line speaks to the true significance of patients’ voices in social media. If you explore what these patients and others have shared through blogs, Twitter, and other social media, you’ll see a variety of perspectives and focus. For example, patients may focus on:

  • Personal aspects of their experiences
  • Technical and scientific implications of their trials
  • Using their experiences as catalysts for change
  • How clinical trials relate to their healthcare journey


Julie Flygare

Julie Flygare is the founder of Project Sleep and an outspoken advocate for people with narcolepsy. In 2013, she got involved with the FDA’s Patient-Focused Drug Development Initiative, leading a campaign to have narcolepsy selected as one of the disease areas to be addressed. She began thinking more about drug development when one of the leaders of the FDA initiative asked her what issues related to her disorder she’d most like to see addressed by a new medication. She was surprised by the question — after four years of advocacy no one had asked her that. But, she was even more surprised by the answers she heard from the narcolepsy community. One of the most mentioned issues was “brain fog” which is not something that was typically listed as an official “symptom” of narcolepsy. This experience lead to her advocating for allowing patients to help determine clinical trial end points for new drugs at DPharm and in other arenas. She regularly features posts about narcolepsy research and drug development on her blog at julieflygare.com.

Lisa Bonchek Adams

lisa adams“… And I know I would have wanted to read posts like these a few weeks ago when I was signing up for the trial. So that’s my guide: if I think it would have helped me, I’m going to share it.”

Lisa Boncheck Adams writes about her life with breast cancer as a wife and mother of three at lisabadams.com. She has also been featured in several other publications including the Huffington Post and USA Today. She has written extensively about her experiences participating in research at Memorial Sloan-Kettering in New York. Lisa weaves personal anecdotes, poetry and clear and thoughtful explanations of some of the scientific reasoning behind both her standard and experimental treatments. Start with “Clinical trial including GDC-0032: cycle 1, day 1” to follow one of her experiences throughout one trial, from beginning to end.

Anna Floreen

anna floreenAnna Floreen is the Community Outreach Manager for MyGlu.org, a type 1 diabetes online community. She has lived with type 1 diabetes herself for 24 years. In 2013, she participated in a groundbreaking trial in which diabetes patients tested bionic pancreas as outpatients for the first time. Before, participants in clinical trials for this system stayed in a hospital for 1-2 days. Anna blogged about each day of the trial and shared personal stories about her history with diabetes, her feelings about the trial, and the hope that testing new technologies can bring to patients with chronic conditions. Most recently, she’s written about the experience of “failing” the screening test for a trial she had hoped to participate in.


Sharing To Change Clinical Trials

As Seth Godin said in his blog post about sharing, “…the recommendation from person to person is now the most powerful way we have to change things.” Clinical trials are no exception to Seth’s rule. Patients who share their stories are influencing change not only among their peers, but also among clinical researchers.


One comment

  1. Pingback: E-patient Voices Can Inspire Change in Clinical Trials | CLINYS – operational excellence for life science companies

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