Improving the Patient Experience: A Partnerships 2014 Recap

I arrived in Vegas for Partnerships in Clinical Trials 2014 with great excitement, prepared for both the expected and the unexpected. And I encountered both.

On the unexpected front, I found unanticipated but welcome connections and conversations, including an extended dinner discussion about Breaking Bad. On the expected front, I caught up with colleagues and attended extremely interesting sessions.

Speaking of interesting sessions, prior to the conference I wrote about some of my more highly anticipated patient-related sessions. Now that Partnerships is over, I’d like to share some of what I learned while attending these sessions.

Congratulations to the Patient Engagement App Challenge Winners

But first, I want to congratulate the Patient Engagement App Challenge winners, who were announced during the conference. I had the privilege of judging this challenge and really enjoyed reviewing the innovative ideas and solutions.

If you have a moment, I’d encourage you to take a look at the winning submissions, which I’ve linked to below. We may very well start to see these or similar solutions incorporated into future clinical trials.

• Grand Prize – Reminderz
• Runner Up – TrialsConnect
• Popular Choice Award – Mosio
• Large Organization Award – Medidata Engage

How The Next Generation of Social Medicine Impacts Clinical Trials

As I previously wrote in a pre-conference blog titled, “Beyond Social: From Connecting People to Connecting Knowledge,” social platforms will democratize healthcare knowledge creation, ultimately changing the face of healthcare. Roni Zeiger, MD, a Partnerships keynote speaker, is one of the people hoping to spark that change.

Dr. Zeiger is the former Chief Health Strategist of Google and Co-Founder of SmartPatients, an online cancer patient network. His keynote topic was “Patient-Centricity and Data Converge: How the Next Generation of Social Medicine Impacts Clinical Trials.”

Dr. Zeiger spent a good portion of his talk focusing on the need for more patient-centric clinical trials. As you might expect from a former Googler, Dr. Zeiger turned to Google for evidence of this need. One slide featured a screenshot of a Google query for “user-centered clinical trial,” which returned no results.

Although I wholeheartedly agree with Dr. Zeiger’s overall point, I don’t think the situation is quite as dire as that particular query might lead one to believe. A search I did for “patient-centered clinical trial,” which is more widely used terminology, returned about 250,000 results. The plural version returned about 500,000 results.

Regardless, our industry has given far too little attention to the needs of patients. As Dr. Zeiger pointed out, we need to consider how our product compares to the healthcare product that patients are accustomed to using. I could not agree more. I’ve written repeatedly, beginning with a blog post titled “The Most Important P in Patient Recruitment,” that we must better attend to the product component of our clinical trial marketing mix.

I also enjoyed Dr. Zeiger’s introduction of the HDMIS acronym. How much does it suck? That’s the fundamental question patients ask as they assess their healthcare options. The outcomes desired by patients are often quite different than the outcomes we measure, and we need to close this gap. For example, one patient of Dr. Zeiger described his desired outcome as maximizing the time he could spend in snow.

Dr. Zeiger’s Silicon Valley background was evident in topics other than the Google reference. He discussed the Minimum Viable Product (MVP) model and how we should apply this technology startup mentality to clinical trials. In the MVP model, the first product you build is terrible (hence minimum viable) but quickly iterated to achieve good market fit.

I also appreciated the mention of A/B testing (or split testing), which is a randomized experiment with two variants, used in digital marketing to optimize for a particular business goal. Dr. Zeiger noted that using a similar approach in clinical trials, we could better understand patient preferences regarding clinical trial participation.

Enabling Patients To Match to Clinical Trials: A Unique Open Collaboration

One project I’ve been watching closely, and will no doubt continue to watch closely, is the open patient-trial matching collaboration between Lilly, Novartis, and Pfizer.

For background and an explanation on why I think this project is a pretty big deal, check out my previous article, titled “Reducing Friction to Clinical Trial Participation: An Important New Collaboration.” I’ve been looking forward to hearing about the progress of this collaboration since I first heard it announced in November of 2013. And at Partnerships 2014 I got that opportunity.

In a panel titled “Enabling Patients to Match to Clinical Trials: A Unique Open Collaboration,” representatives from each collaborating company discussed the project. The panelists were Tom Krohn from Lilly, David Leventhal from Pfizer, and Joris Van Dam from Novartis. I can’t possibly capture all of the interesting tidbits shared and discussed during this panel, so for the purpose of this blog, I’ll focus on a few.

In terms of progression and timeline, the initial proof-of-concept is complete and was validated in tests. The companies will now continue testing the platform over the next couple of months. During the second part of this year, they will work on long-term sustainable model development. And in the first quarter of 2015, they’ll make the platform and API publically available. Lastly, in the second quarter of 2015 they will begin work on attaining broad sponsor support.

The proposed end state for this project is an open platform where:

• Study sponsors can upload a target profile and augmented content for their studies
• Public matching services are available, to which patients or organizations can send de-identified electronic health data and find matching studies
• Open standards are available for those who wish to develop their own matching services against the target profiles

As one panelist pointed out, their experience is that study eligibility criteria comes in three types:

• Things the patient knows
• Things the doctor knows (and you could expect to find in an electronic health record)
• Things tested in screening

Their process for developing the target profile was to:

• Talk to the study physician
• Find out which of the eligibility criteria are in category 2
• Figure out if the criteria from other categories could be replaced or approximated by additional criteria in category 2

I found this explanation of their process to be very interesting and potentially instructive for future patient-trial matching efforts. One panelist noted that though their focus was on category 2, they could potentially incorporate category 1 information into their matching algorithm as well.

Because my primary interest is the patient experience, that’s the topic I chose to focus on in this recap. But Partnerships had sessions on many other great topics. And it offers much more than sessions. For a sampling of other topics and the conference experiences of other attendees, check out my Partnerships 2014 social recap. See you in Boston in 2015!