HxRefactored and The Future of Clinical Trials

Our biggest clinical trial challenges will not be overcome using conventional industry wisdom.

An unsustainable clinical trial model, paired with tectonic healthcare, technology, and cultural shifts, make experience a poor guide for navigating this uncharted territory. In the emerging environment, best practices can quickly become worst practices.

The future of clinical trials resides in the wisdom of outside fields.

One field of particular interest to me is design. Many clinical trial challenges are essentially design challenges, so we have much to gain by applying design thinking to these challenges.

The HxRefactored conference, which brings designers and developers together to explore the healthcare experience, was the perfect venue for me to feed this interest. Below you’ll find a summary of some sessions I attended, with particular attention to how these sessions relate to clinical trials.

Introducing a New Greenfield: Patient Engagement in Clinical Research (A Tale of Woe)

Few clinical research professionals attended HxRefactored, but conference attendees had the chance to learn from among the best in the field. Joe Kim of Shire spoke about patient engagement problems and opportunities in his talk, “Introducing a New Greenfield: Patient Engagement in Clinical Research (A Tale of Woe).”

Joe’s presentation provoked a lot of audience interest, particularly among designers. It also garnered an article in MobiHealthNews. Since MobiHealthNews already covered the talk, I won’t duplicate their summary with my own. But it’s worth noting that I’d describe some of Joe’s points a bit differently than they did.

For example, Joe pointed out that patients view clinical research as a treatment option, since they naturally compare it to all available healthcare treatment options. In the mind of patients, clinical research is a service offering among other service offerings. We as an industry need to consider this reality if we are to improve our approach. However, Joe was not suggesting that we literally market clinical trials as a treatment option, as the article seems to imply.

Changing The World Through Business and Sex

When a keynote speaker begins her talk by suggesting that anyone offended by sexually explicit material leave, you know things are going to get interesting. And interesting they got. Cindy Gallop punctuated her talk, “Changing The World Through Business and Sex,” with a variety of references that would not be appropriate to publish on this blog.

But Cindy’s penchant for shock was by no means a replacement for substance. She weaved her experience as the founder of MakeLoveNotPorn into a larger, and ultimately more important, story about innovation and the future of business. And it’s an inspiring story for those of us pursuing a more collaborative and socially-minded approach to business.

Cindy has a knack for pithy statements, many of which are applicable to clinical trials:

• “Institutions have a vested interest in perpetuating the models to which they are the solution.”
• “Collaborative competition is the past. Competitive collaboration is the future.”
• “Shared Values + Shared Action = Shared Profit (social & financial)”

Digital Whips and Other Persuasive Technologies

In “Digital Whips and Other Persuasive Technologies,” Dustin DiTommaso of Mad*Pow talked about how persuasive technologies should (not) be used. Dustin suggested asking, “Are we designing to make the user follow through on the designer’s intent or to facilitate the user in following their own intent?”

The distinction may seem subtle but it is extremely important and very applicable to what I’m observing in clinical trials. If you want to know why your patient engagement efforts are failing, ask yourself this question. I suspect you will find the source of the problem.

I’ve noticed a trend in clinical trials where “patient compliance” seems to have been rebranded as “patient engagement.” Yet the change in terminology is often not accompanied by a change in approach. Such semantic games may make us feel good, but without a meaningful change in patient experience, we’re fooling ourselves. And I assure you we aren’t fooling patients.

Clinical trial professionals who focus on empowering rather than controlling patients will win.

Design for Understanding

“Information is cheap. Understanding is expensive.”

Stephen Anderson certainly got my attention with this statement during his “Design for Understanding” presentation. For clinical trial professionals, patient understanding has been very expensive indeed. And as patients become increasingly overwhelmed with more and more information, that understanding will only become more expensive. That is, unless we make some changes.

To create understanding, we’ll have to thoughtfully and explicitly design for it. Stephen’s presentation provided some excellent guidance on that front. He described several types of problems of understanding, along with design patterns to solve each type. The types discussed were problems of comprehension, comparison, causal relationships, discovery, relationships, distributed cognition, and practice.

Microinteractions

I’m kind of obsessed with microinteractions. In fact, I spent much of the conference praising a fantastic microinteraction designed by the conference organizers – the conference badge.

The HxRefactored badge consisted of several sheets of paper, which could be flipped through to view the conference schedule. The orientation of the schedule was upside down, so that if you viewed it while around your neck, the schedule appeared right side up. Each day of the conference was printed on opposite sides, so that flipping between days was as simple as a flip of the badge.

Like other microinteractions, the conference badge is a detail that often goes unnoticed. As Dan Saffer noted in his Microinteractions talk, when people think about design they are often thinking in systems. But when thinking in systems the details can sometimes be lost. And the details are what really make the system human.

Dan described microinteractions as:

• The difference between a product you love and a product you tolerate
• The “feel” in “look and feel”
• Signature moments that increase adoption and customer loyalty if done well

My interest in microinteractions, as they relate to clinical trials, stems from my five years as a clinical research coordinator. I saw firsthand how microinteractions had a profound effect on how patients viewed the trial. Furthermore, many patient microinteractions with the clinical trial frustrated when they could have delighted. Yet the sponsor probably viewed these microinteractions as insignificant during trial design.

For example, I remember one trial I coordinated where the drug packaging was particularly confusing and difficult. It was an Alzheimer’s trial. Surely Alzheimer’s patients and their caregivers don’t need us piling on additional daily challenges. And from the sponsor perspective, I can only imagine how this medication packaging might have affected drug compliance.

The Future of Clinical Trials

As illustrated by these session summaries, fields like design can be instrumental in improving the clinical trial model. My hope is that clinical trial professionals reading this will be inspired to explore fields outside of our silo. And by all means report back on what you learn. I’d love to hear about it!