E-patient Voices Can Inspire Change in Clinical Trials 1

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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.

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Our Social Journey Winds Through Medicine X 2

Photo by Standford Medicine X

Photo by Standford Medicine X

On July 30, an article in the Wall Street Journal titled “Clincal Trials may be Compromised by Online Patient Chatter” prompted a lot of discussion among patients and researchers on Twitter. At the heart of the article is a concern shared by many sponsors and researchers: By discussing their participation in trials through blogs, social media, and online forums, patients may be unblinding themselves and compromising the scientific integrity of the studies.

While this is a legitimate concern,and something that should be addressed with input from patients and patient communities, it’s important to remember that open communication online can be  just as much—if not more— of a value to clinical research than a threat.

That’s one of the reasons why I’m excited about the opportunity to present at Medicine X. I’ll be talking about about some of things my Lilly COI colleagues and I have learned through our journey into social media, connecting with people and engaging them in clinical research.

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Bringing Clinical Trials To the ePatient 1

patient and clinician looking at tablet, digital health, mobile health, epatient

hGraph: patient + clinician looking together by Kelly Mansfield is licensed under CC by 2.0

ePatients—patients who are well-informed and empowered by digital technology and see themselves as equal partners with their doctors and healthcare providers—are on their way to becoming more the norm than the exception. For example, according to a recent Pew Research study, 72 percent of Internet users said they had looked up health information in the past year.

Another often-quoted statistic about the current state of clinical trials tells us that only 16 percent of cancer patients surveyed are aware that clinical trials are an option. This could indicate that we are missing opportunities to increase awareness about clinical trials through digital technology and online resources. In a time where 30 percent of trials never get off the ground because they fail to enroll enough patients, we can’t afford to miss these opportunities any longer.  Bringing information about clinical trials to ePatients is important in expanding healthcare options and getting better treatments to the public faster.

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Listening, Engaging and Learning: Lilly Social Media 1

laptop and stethoscope by jfcherry (CC by SA)

laptop and stethoscope by jfcherry (CC by SA)

Earlier this year, we reached our 2nd anniversary on Twitter. When we first started out, we weren’t quite sure what to expect. We began with a foundational belief  “that drug development processes must improve, and that open innovation methods can be used to foster necessary changes.”

In order to have the conversations that would lead us down the path to developing more patient-friendly tools and resources for clinical trials, we figured that social media would be a good place to start. In the time since our first tweet, we’ve come to know people with a wide range of of experiences, perspectives and ideas when it comes to drug development. And, these ideas have had a significant impact on what we’re doing at Lilly COI today.

Our involvement in the online community is one of Lilly’s social media channels, which span a wide variety of platforms including blogs, Twitter, Facebook, Pinterest, Instagram and YouTube. Each has a different focus, but there is common high level intent—engage in public on important issues surrounding disease management and prevention, currently available medicines, and innovation towards the much-needed new medicines of tomorrow.

Here’s a brief overview of each of the channels within Lilly’s online network:

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