Joining with Patients at the Center of Clinical Research 8

susan poteat, patients at the center of clinical research, eli lilly

Susan Poteat presents during the PACCR workshop. (Photo by Gilles Frydman)

A few weeks ago, we had the privilege of hosting a group of ePatients, advocates and engaged industry professionals for our first Patients at the Center of Clinical Trials Workshop (PACCR). A number of Eli Lilly and Company’s drug development leaders joined the workshop to listen, learn, share initiatives and generate ideas focused on how the patient/participant experiences clinical trials and how that experience can be improved.

Though the workshop was somewhat small—30 to 40 people were present throughout the day—there was a great deal of wisdom and inspiration gained from the mashup of diverse experience and perspectives.

The day’s agenda was made up of:

  1. Patients sharing their experience with Clinical Trials
  2. Announcing the winners of the Clinical Trial Visualization Redesign Challenge (check them out here)
  3. Lilly sharing some of our patient-focused initiatives (see overview & eConsent presentations in the workshop notes)
  4. Breakout sessions where patients and drug developers brainstormed and identified how to improve clinical trials (see notes)

Some Thoughts on…

There are too many powerful moments, great ideas and memorable nuggets from the workshop to recount in a single post. We’ve gathered up notes and presentations from the workshop and made them available on our Workshop page. Please feel free to review, comment, question and discuss. You can also read a complete transcript of tweets from the day on Symplur.

The relationships, ideas, and conversations to improve clinical research at the PACCR workshop will continue to guide our Lilly COI efforts. For now, here is a small sampling of ideas generated during the breakout sessions. We’ll share more going forward.

Session 1: Understanding Clinical Trial Information and Finding a Trial

Finding a clinical trial online should be more like a digital shopping experience. Information presented online about the trial should be easy to understand. Eligibility requirements need to be meaningful and clear to the patient, and up to date information about slots available in a trial is needed.

Patients should have the option to read reviews written by patients who have participated in a trial conducted by that same sponsor or trial site.

They should also be able to compare studies and quickly get access to information about the trial from other sources.

Session 2: Joining a Clinical Trial

We need to improve the way information is presented to patients. One of the most confusing and intimidating things a patient encounters when signing up for a clinical trial is the informed consent document. Patients often feel that the information could and should be written in layman’s terms, with less scientific jargon and legalese.

Still, there’s a good argument for the detailed legal and scientific terminology to be provided to assure full disclosure, identify all risks and specify the science being performed.

One possible way to address both groups needs would be to set up an informed consent document in a manner similar to Pinterest’s terms of service.

Using this format, detailed, technical or legal information is represented on one side of the page, with a much shorter, simplified explanation of that text on the other side.

Session 3: Social Media for Pharma

The challenge to pharma is to take the leap to interact with patients online by reaching out, connecting, listening and responding to needs and ideas about clinical research.

It may seem to go without saying, but there’s a need for sincere, honest, intimate conversations and social media is a great way to have them.  Know that being “social” is to interact in an individual, personal way.

It’s important to be authentic, and it’s important to participate in these conversations for the right reasons. People can tell when you’re not “real.”

Session 4: Patient-Initiated Trials

A good place to start is to come up with and refine hypotheses to be validated through clinical trials. What if there were a place where patient ideas could be matched and socialized with other patients and researchers, and then be brought forward as clinical research options? For example, a patient could go to the site and say “I would like to study XYX. Can you help me?”

Other existing research and insight could be brought to bear, and a kind of crowdsourced hypotheses and trial definition would evolve. Pharma, academia or government could then help move those hypotheses forward into trials.

Or, the site could provide an observational research model, where patients can share health data in a secure environment and allow researchers on the site to set up studies based on the shared data.

Session 5: Getting Support During a Clinical Trial

There are many simple things that could be done to make clinical trial participation a better experience for the patient. At the heart of most of these ideas is the need for better communication.

For example, patients and their caregivers should be given detailed schedules with descriptions of procedures to be performed at each visit so they can prepare. That way, if the patient is to have a procedure, such as a pupil dilation, that may render her unable to drive herself home afterward, she will need someone to accompany her to the appointment so that they can drive her home.

Session 6: Integrating Trials into Everyday Life

Currently, sponsors and research sites don’t start talking to patients about clinical research until they want them to join a trial.

Ongoing relationships that establish trust and real value to patients are needed. There’s desire for the opportunity to provide patient-focused input on clinical design far before the study is started. Through these conversations, we will be better able to design trials that fit into patients lifestyles, and overcome common barriers to participation like transportation, child care, work schedules, etc.

What now?

We continue to receive feedback from participants in the workshop, both from our guests and Lilly employees.  It’s been overwhelmingly positive, and, also filled with plenty of ideas on how to make the next one better. As example, see Regina Holliday’s Best Practices Every Medical Conference Should Embrace that helps us see where we met expectations and where there are improvement areas for our next get together.

I’m struck by how much passion, energy any and talent that’s available to improve clinical trials.  What’s not recorded well from this first workshop is the impact the power of the patient stories have, and how they serve to bring us together.

Some progress is being made. Efforts like Electronic informed consent, our collaboration with Pfizer and Novartis on an open framework to help patients match to clinical trials,  and a new Patient Engagement App Challenge are examples we shared at the PACCR workshop that appear to be aligned to what patients need.  Still, there is plenty to do going forward.

Additional progress will be made by patients, researchers and regulators working together to improve clinical research. Technology will be an enabler of the innovation to come, as the power provided by information access and integration into our daily lives becomes more seamless and valuable.  Still, fundamental to any progress is trust.  I hope that the honest, intimate, personal sharing and side-by-side collaboration during the Patient-At-The-Center of Clinical Trials workshop has established a level of mutual trust necessary for us to bring true patient focus to clinical trials.


  1. WOW! Awesome stuff! Thanks so much to all who participated and the seemingly simple innovations that could make a huge difference!! Yay!

    • It was a good day, Jenny – lots of moving, honest, sincere sharing followed by some real work to identify how to improve things. If we only had one more person there…hmmmm…. 😉 Next time!

  2. great post! clearly illustrates the passion and possibilities that such a forum offers. To ‘re-pay’ the partiipants for their time and trust, ‘we’ (Eli Lilly) need to follow-thorugh and act. . .. I am committed to do so.

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