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How to Earn, and Keep, the Trust of Clinical Trial Participants

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When it comes to clinical trials, no one matters more than the participants. After all, they’re donating their time, and to a degree their bodies, for the greater good. 

It’s a selfless yet personal act with the potential to improve health across the globe, which is why Medidata is so dedicated to helping our customers gain and nurture the trust of their clinical trial participants. 

We believe that when clinical trials feel like a true partnership between sponsors, researchers, and participants—where transparency and communication are as valued as results and data—the experience will yield greater results for everyone. 

Listening and Learning from Clinical Trial Participants

To ensure that patient trust is embedded in every clinical trial we touch, Medidata created a Patient Insights Board in 2019. We spoke in depth with clinical trial participants and asked about their personal experiences to gain a better understanding of the concept of trust as it applies to clinical research and the broader areas of healthcare and data protection. 

This information will help improve our solutions and services—while providing more actionable insights for our customers—so we can work together to make clinical research more patient-centric. 

 

“If we want to improve the time it takes to bring new drugs, vaccines, and devices to market, we need to make clinical trials accessible to more people, and we need to optimize their experiences…Patients are people and need to be engaged and appreciated.”

– Kelly McKee, COVID-19 Clinical Trial Participant / Vice President of Patient Registries and Recruitment at Medidata

 

The Foundation of Clinical Trial Patient Trust

Based on conversations with an array of clinical trial participants, all of whom had different experiences, it became clear that there are a few universal truths for establishing and retaining patient trust in a clinical trial.

Clear communication is critical – A successful clinical trial requires a lot of communication between sponsors, researchers, and participants. However, that information isn’t always easy to understand, nor is it always prioritized in a way that best benefits the participant. To build trust with clinical trial participants, it’s important they understand precisely what is being done and why, early in the process. With that established, the communications that follow will have more impact and help establish trust throughout the trial experience.  

Processes should be patient-focused – All clinical trial participants are different, so each trial must be designed for as many different patient types as possible. This starts with the Informed Consent Form (ICF). Consider the needs and concerns of all patients when creating an ICF and continue that approach when designing trial processes to ensure your overall agenda is in line with the health and safety of all participants. For example, we hold Patient Design Studios at Medidata to turn patients into active participants when designing our products. These perspectives ensure that patient centricity remains at the forefront during the development lifecycle.

Keep it personal – To feel safe participating in a clinical trial, participants must trust the people conducting it. That’s why it’s so important that everyone on the clinical side— physicians, researchers, sponsors, etc.—are as personable and supportive as possible when interacting with participants. Real trust can be established when it's clear that the people running the trial are as concerned with participants’ safety and comfort as they are about the data collected.

Honesty and transparency are the best policies Data breaches within studies, as well as the public perception that some pharmaceutical companies value profit over people, has eroded trust within our industry. Sponsors can take an important step towards making participants feel more trusting of the clinical trial process by acknowledging skepticism upfront and addressing it through increased transparency in the clinical trial process. When you are clear about your motivations and expectations for the trial—and forthright with the results—you’re demonstrating to patients that you value them as true partners, not just participants. 

Solicit feedback often Participants are asked to give so much of themselves in clinical trials, but rarely do we ask for their thoughts about the experience—outside of the occasional feedback questionnaire. Sponsors can help build trust with the patient community by continually asking participants for their opinions on ways to make the process easier for them. These insights can also drive new efficiencies in their processes, and potentially find new ways to improve their trial retention numbers. 

 

Building Better Clinical Trials Through Patient Voices

Communicating and engaging with participants throughout the clinical trial lifecycle is key to delivering the best possible patient experience. This patient-centric approach prioritizes earning—and keeping—patient trust, while bringing value to everyone involved in running clinical trials.

Discover how Medidata fosters trust, transparency, and respect for the patient perspective.

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