Reducing Fragmented Clinical Trial Communications for Patients

How are technologies used by Pharma, CROs and Sites responsible for communication challenges for patients in clinical trials?

Patients are navigating a fragmented environment of communication, caused by the disparate technologies sponsors, CROs, and research sites rely on to run clinical trials alongside standard care. Patients receive communication from a variety of sources: email, MyChart, printed documents from their physician, following links, etc., as well as additional sources when the onus is put on them to seek out their own resources.  

Most communication in clinical trials is point to point – sponsor to participant, site to sponsor, CRO to site, etc. Those running clinical trials might feel the acute frustration of playing telephone between stakeholders, but don’t investigate the larger impact it has on everyone – especially patients. This sounds elementary, but we’ve seen that sponsors are making assumptions about the level of burden being placed on patients because they lack direct visibility into patients’ experiences. 

Why is this important for sponsors to be aware of? 

This is an unnecessary burden placed on potentially vulnerable patients at a time when they should be focused on treatment. Not only does this type of communication negatively impact a patient’s recruitment experience and their potential trial participation, it can also increase the risk of non-compliance in missed visits, improper procedure preparation, and more. 

I always use the scenario: Have you ever tried to find an email, and couldn’t? If a patient wants to, for example, look at their consent form again, they are thinking, “Was it in my email? Was it a printed document?” If you’re trying to go back through records, there are currently too many locations to search. As an industry, we sometimes assume that this experience is ‘just how it is.’ But there is a better way to unite sponsors, sites, and participants to provide a central point of communication and additional visibility into the study for all.

"Patients are navigating a fragmented environment of communication, caused by the disparate technologies sponsors, CROs, and research sites rely on to run clinical trials alongside standard care."

How do you propose we improve trial communication?

Advarra Longboat is the single hub to centralize, connect, and simplify the clinical research experience for all stakeholders. Longboat addresses many of the patient engagement challenges we just discussed, while also providing intuitive, centralized tools to accelerate research and streamline compliance for sites and sponsors too.

For patients, this means centralized access to all trial documentation, information about previous and upcoming visits, instructions on how to prepare for procedures, and quick links to contact and communicate with care providers. 

Why is this important now? 

One: This investigation is part of the larger movement of ensuring trial technology empowers all stakeholders, and no stakeholder is left juggling an impossible number of systems. Sponsors and sites alike are committed to providing more options and tools to patients in their trial journey, but the lack of system connectedness and integration threatens both the trial experience and compliance. 

Two: Across the board, everyone is starting to think proactively about how to build a more streamlined and connected trial ecosystem. Since the pandemic, there is increasingly more planning around catastrophic weather events or global conflicts. Sponsors and CROs need to consider disaster recovery plans. If a site is closed for any reason, sponsors and CROs must be able to communicate directly with patients, especially when patients are actively receiving treatment. 

"For patients, this means centralized access to all trial documentation, information about previous and upcoming visits, instructions on how to prepare for procedures, and quick links to contact and communicate with care providers."

What is the impact that communication fragmentation has on sites?

Sites should be seen as trusted points of contact for patients. When sites are not given adequate resources about a study to communicate to patients, it can be frustrating. 

For example: we’ve heard about an instance where sponsors were sending newsletters to the patients, without the site realizing. When the patients went to the sites with questions, the sites felt caught off guard. When developing Longboat, we made sure that if the sponsor sends information to the patient, the site is always included on it. Then, when the patient goes to the site with a question, the site has a frame of reference, acts accordingly, and ultimately makes the patient feel safer and more engaged in the trial. 

Why is this better than the current standard?

Creating something purpose-built for study communication gets us closer to giving patients a consumer experience. Participants are sophisticated and savvy technology users. Their frames of reference for communication aren’t clunky business systems but more often social media applications. To best engage them, we must give them something that is easy and intuitive to use. 

"The lack of system connectedness and integration threatens both the trial experience and compliance."

What level of burden would you anticipate in any change to communication platforms?

Giving patients a new tool at the outset of a study comes with a level of effort, and it’s not as simple as giving the platform login and password. It does require the site to invest time to make sure patients are comfortable. 

However, the investment in adoption up front ultimately leads to long-term patient retention, because we’ve seen that education of and engagement with the participant through the study ultimately drives retention in that study. And it is repeatable. If you are doing multiple studies, it’s a consistent process you can replicate and trust.

What is a big picture benefit you see from investing in more centralized communication with patients? 

One is by sending thank you notes to patients, to make participants feel engaged and appreciated for their contributions to clinical research.

Another is patient data return. Most patients do not have consistent access to both study results and their own health data collected as a part of a study. Instead of sponsors building entirely different data return portals that won’t be used after the trial, using the same platform to deliver thank you notes or results in the system they are already familiar with is a natural extension of the communication the patients have been receiving through their study in Longboat. 

Anything else to share? 

Reimagine your clinical research experience with Longboat. Accelerate the study lifecycle, optimize study operations and compliance, and improve stakeholder collaboration by connecting all sites, sponsors, CROs, and patients through one, intuitive workflow technology. For more information, visit Advarra.com/Longboat. 

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