Guest Column | July 20, 2017

Where Trial Sponsors & CROs Go Wrong With Patient Engagement (And How To Get It Right)

By Esther Schorr, COO and cofounder, Patient Power LLC

Where Trial Sponsors & CROs Go Wrong With Patient Engagement (And How To Get It Right)

As the care partner of a two-time cancer survivor who has benefited from being in more than one clinical trial, I am passionate about banging a loud and insistent drum that more patients need to have the opportunity to get "tomorrow's medicine today." After all, isn't that what clinical trials are all about? My life partner participated in a Phase II clinical trial for chronic lymphocytic leukemia (CLL) 17 years ago — and has been in remission ever since. The combination therapy he received in that trial is now one of the standard treatments for CLL. We are both grateful. So, why are only a tiny percentage of all cancer patients participating in clinical trials?

It's all about timing and perspective. It is understandable that CROs and clinical trial operations staff at pharma companies are laser-focused on patient enrollment and retention in the trials they run. What they aren’t focused on is the patient perspective. Patients are terrified when they are handed a serious diagnosis. First they need to get over the shock, then understand what they are dealing with — how it will impact their life (and the life of loved ones). Then, they need to get focused on the decision with their medical team about how to deal with the disease. It is only then that patients and their loved ones can even begin to think about treatment options — and clinical trials could logically and emotionally enter the discussion. Unfortunately, the communications and tools currently used by pharma and CROs for recruitment often do not acknowledge or address this patient timeline or perspective.

A mere 3 percent of cancer patients are in trials, and they are mostly white and well-educated. How did they end up in clinical trials? Most heard about trials from their physician, did online research themselves, or enlisted a care partner to do the research for them. But what about the other 97 percent? Why aren’t they engaged?

Generally speaking, clinical trials are not embedded in regular physician/patient dialogue as a treatment option. They should be part of every post-diagnosis consultation. All patients need to know what type of illness they have and whether there is a current or possible future treatment. In that context, clinical trial opportunities should factor into any discussion of treatment options.

A “top down/bottom up” educational approach is needed to make clinical trial recruitment and retention a reality. If physicians don't get smarter about clinical trials in their area of expertise, they will lose patients — and it is up to trial sponsors to keep physicians up to speed. There is ample technology available to regularly update medical teams about clinical trial availability and enrollment requirements. Similarly, patients need to become empowered consumers — and they can be if the clinical trials option is embedded in every treatment planning discussion.  For example, there are a growing number of online clinical trial finder tools that can easily be accessed by both medical teams and patients/care partners to search for appropriate trials based on a patient’s disease profile. 

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Clinical departments within pharma companies should commit to physician education or have CROs do it (or both). CROs and sponsors need to develop and disseminate clinical trial “myth-busting" information aimed at patients — across demographics and diseases where trials are happening. A number of excellent third-party organizations are already helping sponsors create this kind of educational material. Many patients have grave misconceptions about what a clinical trial is, what risks are involved, and what the benefits are — to themselves and to the advancement of medical science. Until those misconceptions are dispelled and clinical trials are elevated to equal footing with other presented treatment options (where appropriate), it will continue to be an uphill struggle to fill trial quotas.

A very valuable recruitment tool is woefully overlooked: patient-to-patient communication. Many patients/survivors who have been through a clinical trial have had their life extended and their quality of life improved. They are the very best voices to enlist to help educate and support others who are at a trial decision point. Their testimonials and insights are worthy of capture and could be very supportive in encouraging adherence during trials.

Clinical trial design must take the patient experience into account. More often than not, clinical trials are characterized by multiple long-distance trips, days spent in clinics or hospitals for infusions over many months, extensive data collection times, and minimal financial support. This scenario is simply not viable for most cancer patients. Unless they happen to live in close proximity to a major center of excellence or other clinical trial site, the commitment of time, energy, and resources can be overwhelming —and possibly a full-stop for participation.

The evolving possibilities for remote trial treatment administration and virtual monitoring in a local clinic setting are encouraging, but executing these models will involve broad-based education of local medical teams, rigorous protocols, standardization of lab processes and reporting, and more. Over the long term this effort will be worthwhile, but it is a longitudinal commitment pharma and CROs will need to make to solve the problem of getting and keeping patients in their trials.

The bottom line is that patients want to get well as quickly as possible and for as long as possible.  For many of these patients, clinical trials hold that promise – but accurate, complete, and comprehensible information about them needs to be easy to access and readily available to discuss with their medical team from the outset of a treatment journey. It is CRO’s and pharma companies that can do much more to make this information connection happen.

About The Author:

Esther Schorr is cofounder and COO of Patient Power, an online channel for cancer patients and family members. She and her spouse, Andrew, have focused on patient and family education projects for more than 30 years, and Esther has supported Andrew in his cancer journey since his diagnosis in 1996. Esther is passionate about empowering “care partners” and is a strong believer that education leads to empowerment and better care. She has spearheaded the development of a Care Partner Center on to help connect care partners with each other for support and information sharing, as well as surface resources to help care partners navigate their special role in the healthcare and advocacy journey. Currently, Esther is driving a “social listening” initiative in collaboration with an innovative tool partner to provide deep insights about patient and care partner concerns.  This insight can be used to target and produce relevant content and support clinical trial recruitment efforts. 

Esther’s experience as a business and marketing consultant and project manager spans the high technology, finance, hospitality, not-for-profit, and health care sectors. She has an undergraduate degree in communications and an MBA, both from UCLA.