Guest Column | February 27, 2018

Revitalizing Clinical Trial Information Exchange & Registries

By Roslyn F. Schneider, M.D., Global Patient Affairs Lead, Pfizer


Patients, family members, and friends make up the largest user group of clinical trial registries such as, according to the U.S. National Library of Medicine. Clinical trial registries serve many important purposes for patients, which is why having an online resource that is not only user-friendly, but also patient-centered, is imperative. Access to a wealth of information on clinical research has become increasingly important for many stakeholders, with patients at the forefront.

Unfortunately, current online clinical trial registry modules prevent full utilization of the available information. To better understand how to evolve these portals to more modern standards, TransCelerate met with a group of 10 patients, caregivers, and patient advocates, making up the Patient Advisory Board (PAB). They examined the current landscape of online clinical trial registries and identified barriers that affect the patient’s experience when accessing and operating these online portals. Information overload, fear, uncertainty of suitable clinical trial paths, and a lack of coordination among clinical research stakeholders were key barriers identified during the assessment.

For patients to fully benefit from these online resources, several factors must be addressed in the design of future clinical trial registries.

Information Is Lost In Exchange And Translation

First and foremost, information exchange is not a smooth and seamless process. The patient’s experience begins long before trial enrollment and participation. Thus, the clinical trial community needs to address gaps in communication beginning with the physician-patient encounter. Conversations between patients and providers can get lost in translation due to medical jargon, with patients feeling misinformed and/or confused. Additionally, information on trial registries is not written with the patient in mind. Information shared through these registries must be presented in plain language. In addition, information is not easily accessible. For patients to be able to make informed decisions about their clinical trial options, the way data is shared and exchanged requires a makeover. Eighty-one percent of patients reported it was important to know the potential risks and benefits of a specific study before considering participation and also expressed a desire for more information during and after a trial. According to the CISCRP’s 2017 Perceptions & Insights Study: The Participation Experience, 53 percent of patients did not receive an update or summary after they finished their study. Clinical research sponsors and data managers have a duty to ensure the accuracy of the information provided, as it is central to higher satisfaction outcomes and a better information exchange experience with patients.

Patient Experience Is Put On The Back Burner

Patients want to have information at their fingertips, but today’s user experience for clinical research registries can cause many users to get frustrated and leave them uninformed. With today’s ever-evolving technology, navigating online clinical trial registries should be seamless. However, many clinical trial registries are not yet mobile or tablet-enabled, not allowing patients to fully take advantage of the resources and information these educational portals provide.

Research published in “Improving Investigative Site Contact Options on Clinical Trial Registries: Making It Easier for Patients to Find Clinical Trials” showed 50 percent of potential clinical trial participants indicated they found information on trials through a general Internet search. Having a system that is not user- or patient-friendly can greatly impact clinical trial recruitment. A more informative, interactive, and easy-to-navigate platform can improve the patient experience at every point of a clinical trial journey.

A Registry For Patients, By Patients

With a clearer understanding of the hindrances that affect a patient’s experience, together TransCelerate and the PAB designed a proposed solution for public registries to address issues of accessibility and usability; thus, the “Clinical Trial Registry of the Future” was born.

The “Clinical Trial Registry of the Future” concept puts the patient’s demands and needs first. From its easy-to-use interface to its more modern look and feel, the new registry could take the patient’s experience to new heights. Patients would be able to access registries from their phones and other mobile devices, easily search current and upcoming clinical trials, and be better equipped to identify opportunities that match their needs and enroll with a tap of a button. Not only could this proposed solution have a positive impact on the patient community, it would also create value for the medical community and public. Integrating clinical trial registries and electronic health records would provide an opportunity to link clinical research opportunities to points of care.

Bringing this concept to life would require cross-collaboration among multiple key clinical research stakeholders. But if executed correctly, the result could be a game changing experience for the development and delivery of medical innovations to the patients who need them most.

About the Author:

Roslyn F. Schneider M.D., MSc, FACP, FCCP, serves as the global patient affairs lead at Pfizer and was in clinical practice for 20 years. As a member of Pfizer’s Medical Leadership Team of the Chief Medical Office (CMO), Schneider drives patient-centricity and integration of the voice of the patient community throughout the life cycle of medicines and their development. She’s also a lead for the TransCelerate Clinical Research Access & Information Exchange Initiative.