We’re privileged to be working with Rahlyn Gossen, founder of Rebar Interactive, a digital strategy consultancy serving the clinical research industry. Rebar Interactive creates empowering (and award-winning) digital experiences for patients and professionals. Rahlyn’s digital marketing expertise spans a variety of areas, including search, social media, and mobile. Her work is infused with a patient-centric perspective, honed during Rahlyn’s time as a clinical research coordinator.
Rahlyn publishes a widely-read clinical trial blog and newsletter focusing on digital strategy, the patient experience, and innovation. The same topics are explored in 140 characters or less on Rebar Interactive’s Twitter account. Rahlyn also serves on the editorial advisory board of Applied Clinical Trials. Rahlyn is a proud New Orleanian and a connoisseur of cute online animal videos, particularly those of the feline variety.
Tell me a little bit about yourself, and the path you’ve been on to make clinical research better.
I graduated from Grinnell College, a small liberal arts college in small town Iowa. My major was sociology with a focus on social psychology. I also took quite a bit of philosophy, political science, and Africana studies classes. Shortly after I graduated from college, I sort of fell into a clinical research coordinator position. Right around that time, I also discovered Friendster, which was one of the first big social networking sites and pre-dated MySpace. Both of these early post-college developments would turn out to be important dots that I would only be able to connect looking backwards, as Steve Jobs put it in his Stanford commencement speech.
The first “dot” was the research coordinator position, where I specialized in Alzheimer’s disease. During my five years in that position, I became increasingly frustrated with the experience that we were providing clinical research participants. As a research coordinator I strived to improve this experience. But my ability to improve the patient experience was limited by decisions that had been made at the sponsor and CRO level. Clinical trials are very process-driven, and you don’t just deviate from that process because you see fit. Research sites even have a process for reporting a deviation from the process!
The second “dot” was my discovery of Friendster and developments that would follow it. As a sociology major, I had studied social networks, and I realized that by making these networks tangible on the Web, things were about to get very interesting. I continued to follow the socialization of the Web over the years, fascinated by how this socialization was humanizing technology and bringing people together. I also became fascinated by how this more human Web was transforming industries.
As I witnessed other industries transforming, I saw an opportunity to change the things I did not like about clinical research. So I founded my company Rebar Interactive, which is focused on making trials more technology-enabled and human-centered, particularly as they relate to patients. I use the Internet not only to engage patients, but also to engage with clinical researchers and others who share common professional interests.
And that’s what ultimately brought me to Lilly Clinical Open Innovation (LCOI). When you talk about your interests online, you tend to find other people online who share those interests. LCOI was talking about similar things and seemed genuinely interested in improving the patient experience. They were also doing a fantastic job using social media, which is pretty atypical for pharma. So naturally we started talking and developed a relationship over the last couple of years. That relationship progressed to the more formalized relationship that my company has now with LCOI. My initial impression of the people at LCOI turned out to be highly accurate. They are serious about improving the patient experience and truly get social media. So I could not be more thrilled to be working with this amazing team.
Where do you see breakthrough opportunities to transform clinical trials?
During my time in clinical research, I’ve witnessed a series of technological buzzwords wax and wane in popularity. Each time a technology enters the hype cycle, the hope seems so be that this will be the one that fixes all of our problems. When that technology fails to meet lofty expectations, the industry moves onto the next great hope. Don’t get me wrong. I can geek out over healthcare and clinical trial technology with the best of them. And I believe that technology can aid in transformation. But what we are dealing with is not fundamentally a technology problem.
It’s a people problem. In particular, it’s the experience we provide the most important people in clinical trials – patients. Until we re-orient our perspective to put patients at the center, we will continue to struggle to enroll, and ultimately, successfully complete clinical trials. If we are using social media or mobile apps or big data or whatever and providing a bad experience for patients, these technologies are going to fall short in transforming clinical trials. As a research coordinator, I saw first hand how bad use of technologies could actually be worse both in experience and efficiency than the paper-based systems they were replacing. Technology is a means, but patient experience should be the end.
How will improving the patient experience transform clinical research? We need only look to companies like Zappos. Zappos does not sell shoes. It sells a great customer experience. And the same goes for Amazon, which now owns Zappos. These companies are so committed to providing a great customer experience that they will prioritize it over their own short-term interests and revenues. For example, the record for Zappos longest customer service call is almost ten hours. That’s unbelievable! Their commitment to customer experience is woven into the company culture and demonstrated in the actions of employees at all levels. They have been rewarded for this commitment both financially and with devoted customers. Fantastic customer experience is great for business.
Similarly, I think fantastic patient experience is great for clinical trials. In clinical research patients are our customers. They may not pay in money like customers. But they pay in time, blood, risk, assessments, procedures, and ultimately data. In the same way that businesses cannot exist without customers, clinical trials cannot exist without patients. Our success hinges on them. By being relentless about improving the patient experience, we will attract more patients to clinical trials, among many other benefits. My belief is that the transformative power of a fantastic patient experience will only grow as certain technological and generational shifts continue.
What unique perspective, skills or talents do you feel you bring to help make clinical trials better?
My perspective tends to be from the view of the site and patient, which I think is much needed for the industry. I started my career in clinical research as a coordinator and founded Rebar Interactive because of my experience in that role, so much of what I do is grounded in patient and site needs. I think clinical trials have been far too skewed to the sponsor and CRO perspective. Balanced insight, and subsequently support, of other stakeholders is critical to trial success. Without patients there can be no clinical trial.
The clinical trial rubber meets the road at the site and patient level, and I understand these realities because I’ve dealt with them. The most grandiose of plans can fall apart if real world conditions and people have not been properly incorporated into the plan. I personally worked with hundreds of patients as a research coordinator, which has helped me to empathize with and understand their needs. I also think I’ve been pretty successful at communicating the site and patient centric view to sponsors in a way that hopefully spurs changes to benefit all clinical trial stakeholders.
In terms of more concrete skills, I bring digital marketing and an understanding of the human side of technology. With more and more patients finding their healthcare and clinical trial information online, these skills are increasingly valuable. My expertise spans a variety of areas, including search engine marketing, social media marketing, mobile, and more. The lines between all of these areas are blurring, so it’s important to grasp how the pieces fit together, which I do.
What issues/topics within clinical research are you most interested in and why?
My interests tend to fall most within what I would call the human side of clinical trial technology, particularly as it relates to patients. I think technology is most transformative when it adapts to humans, rather than the other way around. Technology can be much more easily adapted to human nature than human nature can adapt to technology. And patients will increasingly expect that clinical trial technology adapt to their needs. Companies like Apple have raised consumer expectations of technology, in turn raising patient expectations around the clinical trial experience as well.
For example, while study websites have been around for several years, they need improvement. The industry has mostly approached study websites as a brochure. Yet websites are a unique interactive medium that provide us with new opportunity to inform and engage patients. LCOI’s LVJJ pilot study website is an excellent example of how we could be doing better. In addition, I’m also very interested in using social media to connect with patients. Social media is fantastic at building human connections and trust. Given common public mistrust of clinical trials, this ability is sorely needed within the clinical development space.
In the longer term, I am very interested in mobile health and wearables in clinical trials. Sure, mobile phones are being used in clinical trials today, but I think it will be a while before we really figure out what to do with them. We are going to have to reinvent the clinical trial model to fully incorporate the capabilities afforded by mobile and related technologies. That won’t come quickly or easily. But once we figure it out, the clinical trial experience will blend seamlessly into the patient’s life experience. And then anyone can easily participate in research.
What are some ways you’re hoping to help improve the clinical trial experience for patients?
I think all aspects of the patient experience need improvement. Mentally, I classify the potential improvements into three major areas. Many individual improvements will be applicable to two or more of these general areas.
First, we need to meet patients where they are. The conventional clinical trial model requires patients to conform their lives to the clinical trial. Clinical trials should instead conform to patient lives.
Second, we need to help patients feel connected. We’ve not accounted for the innate human desire to feel connected. Clinical trials should instead help patients to connect with patients, clinical researchers, and clinical research.
And third, we need to relentlessly create value for patients. The conventional clinical trial model has focused primarily on creating value for the sponsor. Clinical trials should instead focus on creating value for the patient.
Now you can certainly imagine how thoughtful use of technology could facilitate these improvements. Mobile technology presents new opportunity to meet patients where they are, while social media can help patients feel connected. But again, I want to emphasize that these technologies are just the tools, and it’s how we use these tools to improve the patient experience that really matters.