December 10, 2014 | In February, Clinical Informatics News will be attending the 2015 Summit for Clinical Ops Executives—SCOPE—in Orlando, Fla. We sent a handful of questions to several SCOPE speakers to get a taste of what’s on the agenda.

Eric Peacock, Co-founder & CEO of myHealthTeams will be speaking as part of the Patient Engagement, Enrollment and Retention through Communities and Technology program (Thursday, February 26, 8:45).

Taisa (Taya) Skubiak, Associate Director, Global Recruitment & Analytics at Bristol-Myers Squibb will be speaking on the Enrollment Planning and Patient Recruitment program (Wednesday, February 25, 11:40).

Clinical Informatics News: Eric, you are presenting a case study on “Engaging Patient Social Networks in Clinical Trial Design and Enrollment: Lessons Learned from Real Case Studies” at SCOPE. Why did you choose this topic? 

Eric Peacock: Last year we surveyed members of MyMSTeam.com – our social network for people diagnosed with multiple sclerosis and asked them this simple question: “If we at MyMSTeam identify clinical trials that might be relevant to you, would you want us to notify you?”  The response was a resounding “Yes” (85% of respondents answered “Yes", 7% “No”, and 8% “I don’t know.”)

Based on that response, we partnered with Biogen Idec to help them recruit patients for a clinical trial in relapsing multiple sclerosis.  The results we got were overwhelmingly positive.  Our members loved that we did this for them, the response was very fast (about 24-48 hours), and conversion rates on qualified leads was about 15% (which is 10x the typical web referral).   Since then, we have partnered with several other pharmaceutical and biotech partners to help engage our members in clinical research.

What are the biggest challenges with building relationships with patients and communities? And, how are patient social networks changing the way we view trials? 

In a word, “Trust.”  That is the biggest challenge pharmaceutical companies face in engaging patient communities, because pharma companies aren’t always viewed as objective. We have six social networks (MyMSTeam, MyLupusTeam, MyBreastCancerTeam, MyCrohnsAndColitisTeam, MyCOPDTeam, and MyAutismTeam).  When we partner with a pharmaceutical company, all communications to our members come from us.  We have a few rules that help us preserve the trust our members have in us.  First, we only partner on trials that will empower our members.  Second, we never share our members' contact information with anyone and we only email them if the partnership is directly relevant to them.  Finally, we are always transparent with our members about the nature of our partnership (i.e. naming the partner and stating that we receive financial compensation).

What do you regard as new and exciting in the field? 

Engaging patients in clinical trial design and seeing members of our social networks who have been in a trial educating other members of our social networks.

Have you had any articles or white papers published on this subject recently? 

“Transforming Recruitment for Clinical Trials via Patient Social Networks” DIA Global Forum / Inform.  Vol 6.  Issue 5.  

Clinical Informatics News: Taya, you are presenting on “How Listening to the Voice of the Patient Can Increase Enrollment” at SCOPE? Why did you choose this topic? 

Taya Skubiak: The topic of patient centricity in clinical trials is de rigueur , though it is much more than just a fad. Though the patient perspective was considered in some aspects of trial enrollment in recent years, we generally had not put the patient at the center of what we do. As such, we have missed opportunities to learn from patients and their experiences when designing comprehensive recruitment and retention strategies. The recent focus on patient centricity has forced people to re-think how we approach trial enrollment, and that we need to listen to the patients to learn how to enroll trials better and faster.

Your topic refers to “the Voice of the Patient.” Can you explain what that means? 

In business, you often hear the term “voice of the customer”, and this refers to a comprehensive evaluation of your customer to understand their needs, wants, expectations, dislikes, etc. Often an in depth process is undertaken to gather this information, which is used to further refine a business strategy. Similar terms are commonly used, such as “voice of the business”, to similarly evaluate other stakeholders. Food and Drug Administration has recently used the term “Voice of the Patient” in a series of reports for their patient-focused drug development initiative and others have started to adopt this term as well. At Bristol-Myers Squibb, we have recently started using this term as part of our strategy to consciously reach out to and learn more from the patients for whom we discover and develop our drugs.

Which talks are you looking forward to the most (apart from your own) and why? 

I am really looking forward to the plenary keynote sessions, as SCOPE has put together great speakers and panelists who are leading change in our industry.

What do you regard as new and exciting in the field? 

I am excited about the new wave of innovation that we are seeing. As an industry, we are slow to change and adopt new technologies (who else still uses fax machines?), but I am excited to see multiple sponsors and CROs adopting strategies from the technology, design, and other industries to really challenge our status quo.