Challenges in Rare Disease Clinical Trials: Q&A with Paige Bingham, CEO of Meeting Protocol Worldwide

Paige Bingham, CEO, Meeting Protocol Worldwide

In this Q&A with Applied Clinical Trials, Paige Bingham, CEO of Meeting Protocol Worldwide shares her background in meeting planning and how it translated into addressing logistical challenges in rare disease clinical trials. Bingham also discusses the creation and work of Scout Clinical, a clinical trial patient travel and reimbursement company.

Applied Clinical Trials: How did you become interested in rare disease clinical trials?

My professional background is in clinical investigators’ meeting planning. One of our primary service offerings is the organization of clinical study kick-off meetings in which doctors and nurses from each clinical trial site may be trained on how to appropriately facilitate a clinical trial. This includes clinical trial protocol, such as administration of therapeutic candidates and compliance considerations. In coordinating these meetings, we became aware of the tremendous need for innovation within rare disease clinical trials and the incredible complexities of patient and caregiver travel.

ACT: You have been with Meeting Protocol Worldwide since 1999. Could you take our audience through your time there?

I joined Meeting Protocol Worldwide in 1999 to establish our London office and to extend our global presence. After five years in London expanding our meeting planning business to European clients, I returned to Dallas as Chief Operating Officer, at which point I started focusing on how we may adapt our meeting services to be as effective as possible for our clients. Our company became more involved in meeting agenda design, taking a consultative approach that extended past only organizing the logistics of booking flights and hotels and ordering meals. We helped our clients design their meetings to be as effective as possible.

As the clinical trial industry evolved, more compliance measures were established around the interactions between pharmaceutical companies and investigators. I helped oversee our regulatory department, making sure that we were complying with our clients’ guidelines as well as different countries’ rules and regulations around HCP reporting. As the company grew, my focus remained on understanding the industry from global and clients’ perspectives, the best places to conduct these meetings, and what the regulations and rules are.

ACT: During your time as COO, you played a major role in the creation of Scout Clinical. Could you tell our audience a bit about Scout Clinical and the process of how it was created?

For the last 28 years, Meeting Protocol Worldwide has organized investigators’ meetings in which we have moved hundreds of thousands of people on a global scale. Our clients are global clinical research organizations and clinical trial sponsors conducting their studies across multiple countries and continents. These organizations need a vendor that can work with them across all facets of clinical trial meeting planning, and it is this need that ultimately led to the creation of Scout Clinical.

Several years ago, during an annual sales meeting that we organize for one of our large CRO partners, our contact pulled me aside at a coffee break and asked if we had ever considered expanding our services into patient travel. At that point, we were operating on six continents and in over 100 countries, managing travel and reimbursements on a global scale. Through our investigators’ meeting experience, we understood the clinical trial industry, the timelines and terminology, and the importance of sites and patients to the success of a study.

We explored this request, and this ultimately led to the creation of Scout Clinical in 2016. Our team members’ skill set matched with the commitment and care needed to help make a difference for patients and their families through streamlining clinical trial transportation and payments.

ACT: What are some of the challenges associated with coordinating patient involvement in rare disease clinical trials, such as transportation and reimbursement?

There isn’t a one-size-fits-all solution for rare disease clinical trial transportation on a global scale. Many factors need to be considered, such as age, levels of mobility, socioeconomic status, and location.

From a logistics perspective, there are limited sites and treatment facilities that may accommodate rare disease clinical trials which leads to transportation and accessibility concerns. Many of the participants in rare disease clinical trials are children, and this requires transportation to clinical trial sites not just for the patient, but for their family members and caregivers as well. The use of wheelchairs and oxygen tanks also pose a challenge as many vehicles and methods of transportation do not accommodate medical equipment.

Movement between countries and continents can also pose unexpected challenges due to the legal ramifications of international travel. We work with patients with rare diseases from a variety of countries, and moving patients to clinical trial sites outside of their home country may require involvement of governments to approve the travel request.

In some cases, we will consult with national and international agencies for clarification on what parts of travel and reimbursement we are allowed to facilitate as a third-party clinical trial services vendor. This includes inquiring about our ability to book flights and pay for transportation for the patient and their family, as well as purchasing meals. Our team also works to provide patients and their families with the necessary legal paperwork to allow for international travel and clinical trial participation.

ACT: What are some solutions that can address these challenges?

The complexities of patient travel cannot be addressed through technology alone. Ultimately, the solution is to have a team of dedicated human beings who can improvise and adapt to address issues as they arise. We are a service company that utilizes tech as a tool to help us provide services on a global scale. We are entrusted with providing not only efficient, but safe transportation for some of the most underserved and vulnerable patient populations.

Patient advocates are essential for effective clinical trial operations. At the backbone of our company are patient liaisons who speak a multitude of languages and provide assistance to the patient, their families, their caregivers, and clinical trial sites. We rotate our patient liaisons so team members are available around the clock, giving patients and our clients the opportunity to interface in real time with a person who can implement solutions immediately, and not just take a message and wait for someone to call them back.

Easy access to translation is also essential when considering clinical trials with a global scope. Aside from patient liaisons who are fluent in other languages, we utilize a technology for telephonic, immediate translation. If a site or patient calls us speaking a language we are not fluent in, we can contact a translator on the phone within two minutes.

Clinical trial transportation and payments must be considered from the onset while designing a study. Clinical trial planners should discuss what services the study needs based on the patient population, disease, and countries involved. Every country is different in terms of regulations and what transportation is available, so solutions may be adapted from country to country. Patients also have different cultural preferences, so clinical trial organizers must be cognizant of this on an individual basis when patients are transported outside of familiar areas.

ACT: What are some current or future projects you are excited about at Meeting Protocol Worldwide and/or Scout Clinical?

Our goal is to have the research sites be as involved or as uninvolved in the patient travel and payment process as they want to be. For sites that prefer a more hands-off approach, we facilitate all clinical trial transportation and payments once the client confirms that the patient is enrolled in the study.

We are focused on relieving the site burden and, most importantly, increasing patient retention, which is a major problem in the clinical trial industry. When a patient encounters a roadblock, we need to help them navigate around it and continue with the study. While we do not organize patient recruitment, we want to do everything in our power to help our partners keep patients in their trials. We continue to focus on the overall patient journey, and how we may act as a liaison for sites and patients as they navigate clinical trials.