Tell us about how you are working with patients at Biogen and utilizing feedback to help patients and medicine development?
We're applying patient insights to inform protocol development, outreach strategy, branding and messaging, and to shape the strategies that we use to help support patients throughout the process. For a study in Parkinson’s disease, we used patient insights to help inform the development.
"We saw how eager to participate and eager for information patients with Parkinson’s were. We wanted to honor that, by being proactive with study communications, and adjusting the messaging on our website over time as we got feedback from patients."
What feedback from this patient population directly impacted how you crafted recruitment materials?
One thing we found was that because they were fairly new patients, they were not active in patient advocacy groups, and many had never been in a clinical trial. For members of our ad board, it was only years after diagnosis was the subject of clinical trials broached to them by their HCPs.
That meant that, if we approached patents about a trial meant for the early stages of their treatment, that there would need to be an explanation of what clinical research is, what’s involved in clinical research participation, how it affects the future of their treatment journey, what their options are at that time, etc. Therefore, a general level of clinical trial education became part of our materials.
Another came from feedback we received across the board, in the US and ex-US. This was that information patients found the early stages of diagnosis was very dark and negative, and it left patients feeling hopeless. Therefore, it was important for us – with the name, branding and messaging of the study – to bring a sense of hope, optimism and brightness. Of course, with ethics and compliance you cannot be too promissory, so we had to be creative in how we conveyed that feeling.
Can you expand more into how you created a sense of optimism without crossing the ethics line?
One way was that we chose images to be on the website and the social media ads that had light and natural colors in the background. The main hero image on the website is a woman walking her dog in a park, where everything is green, lush and sunny. We're not saying that if you participate in this study that you're going to have a great sunny day, but it was important that we brought as much light into it so that it wouldn't feel like a cumbersome undertaking to participate in a study.
And then the study’s name wasn’t a word that exists but it reflected light, hope, optimism, etc. We’ve also found, from past studies, that using nonspecific words as study names can be very successful.
"We saw something that was obviously a stumbling block, so we asked, “How can we make this question better? How can we reword it or change the logic?”"
What insights about the patient community were particularly impactful in how you interacted with them?
After interacting with the patients we engaged and the advocacy groups and foundations we worked with, we saw how eager to participate and eager for information patients with Parkinson’s were. We wanted to honor that, by being proactive with study communications, and adjusting the messaging on our website over time as we got feedback from patients to make sure we were answering the primary questions they had and that we were arming them with enough information to make informed decisions.
When it came to trial-specific information, our ad board participants stressed that they wanted information before, during and after their participation. You cannot give people their results or data mid-trial, but we’ve committed to making sure they have information about the study and their participation post-trial.
This population was very interested in learning more about their disease and how this study applies to future generations. Participants are giving a lot of their time, and it's altruistic to participate in a trial like this. Part of the interest in getting some of the data and post-trial information is also to see what personal impact they're having on the progression of research.
Can you talk about how you revised information that was already IRB-approved, based on patient feedback?
There were several different things that we ended up changing on the study website to help optimize the process that were in response to patient insight feedback.
One was on the pre-screener, which asked basic questions about their health and diagnosis that would either pre-qualify them to be sent to a study site or disqualify based on initial criteria. When we went into the website’s metrics, we saw there were a few questions where we saw people were either getting stuck on questions and abandoning the survey or getting disqualified on certain questions because they felt they had to go back to their medical records to better understand what the question was asking.
Even different teams looking at questions, and all the testing that’s done can’t always account for the ways that questions might get interpreted when a screener is live. We saw something that was obviously a stumbling block, so we asked, “How can we make this question better? How can we reword it or change the logic?”
What was the course of action, and how did you get team buy-in to make the change?
We rewrote the question, and although it is a big investment to make these changes, we had the analytics from the website that showed this was our top question for dropouts as justification.
No team wants to resubmit, update, redo, etc, after something is already IRB-approved, but if it’s going to make a significant difference in the user experience on the website, our end goal is getting the patients connected to the sites. And now, for future Parkinson’s trials or other trials, we can use that as an example to improve other pre-screeners.
What advice would you give about developing metrics to convey the value of patient engagement?
Having a good tracking and analytics plan at the beginning is important. Because we had every source tracked and patients tracked through the website all the way from impression down to enrolled patients at site we were able to see the contributions from patient advocacy groups, digital campaigns, HCP referrals, etc.
We were able to see what we contributed from digital outreach, websites, the results of the creative that reflected the light and optimism, etc. The outreach campaigns contributed to 12% of overall screenings and 10% of total enrollments globally. When you drill down to the specific countries that the website was live in and we were doing digital campaigns in, the contribution was closer to 24-25% for both screening and enrolled.
It gave us a good case study in how we can use patient insight information to shape a campaign and make sure that we're creating campaigns that resonate with the participants while also listening to them and reacting to what would make their experience better over time.
"Having a good tracking and analytics plan at the beginning is important...We were able to see what we contributed from digital outreach, websites, the results of the creative that reflected the light and optimism, etc."
What advice or thoughts would you want to share with industry patient engagement colleagues?
When biotech and industry recruitment people have done a number of studies and programs in one indication, it can be easy to say, “We know these patients, and their motivations.” But the landscape for patients is constantly changing, and how they want to be communicated with is changing. You cannot do one advisory board and call it a day. You have to truly listen and look at the data to constantly improve and continuously better understand patients.
It’s also not just about the patient profile. As protocols are getting more complicated and specific, we want to make sure that we’re creating protocols that are recruitable but that don’t put too much burden on patients or their families.
