here is increasing interest in data privacy and data sharing in clinical trials, and most publicly available information is targeted toward individuals with training, experience, or expertise in these areas. In response to the increased misinformation and misconceptions in society about clinical trials during the global pandemic, PHUSE—a global community of data science professionals, founded under the acronym Pharmaceutical Users Software Exchange—began a collaborative project to produce a video series focused on creating engaging content organized into logical sections in the form of bite-sized videos.

New members are welcome to join at any time during the lifecycle of this project and contribute their ideas to make their mark in this exciting initiative. This video series includes an introduction and six short videos covering frequently asked questions by the general population (any member of the public regardless of their sector or profession) about data privacy and sharing in clinical trials. Learnings from the co-creation and user testing processes of the first two finalized pilot videos will be applied to the development of the next ones in the series. Pilot videos are embedded in this article.

Both pilot videos were created by the PHUSE Data Transparency Working Group and are aimed at the general population. Data transparency is about building trust and a dialogue where we can freely exchange ideas and collaborate. Our project has included a rewarding journey comprised of multiple stakeholders with a diverse range of backgrounds and experiences, to reach our unified goals in health literacy. The goal was to make information accessible to all, with a positive impact on families and the wider community.

Video 1: Importance of Clinical Trials

This video covers the key concepts of clinical trials before delving into more complex topics. Our two characters will build upon their discussion in each video. The videos are not dependent on each other and can be viewed alone. Watched together, the videos provide the big picture overview of data privacy and data sharing topics in clinical trials.

Delivering Educational Content in the Post-pandemic Digital Age

Our mission is to educate the general population about data privacy and data sharing in clinical trials and to tackle misinformation and misconceptions. For our collaborative initiative, we chose videos as the best method for accomplishing this goal, as they offer an engaging option for communicating plain language content in the current digital age. Following release of our two pilot videos, we conducted strategic useability testing to make sure we develop future video content in alignment with both our goals and the needs of our audience.

Useability Testing and Feedback Groups

Videos 0 and 1 were co-created in a multistakeholder group through robust review and approval prior to release into the public domain, followed by user testing and feedback. We strongly encourage anyone who would like to shape the future and evolution of these videos to join our project. Patients and carers are participating in our content-creation process, and the importance of the topic to them helped us to discuss and decide on the most meaningful areas to include for the audience. Learning about users’ attitudes and expectations is essential in developing additional content that builds on the strong foundation of our first two videos.

An information-gathering exercise to collect input on the distribution and dissemination of the videos was conducted in the form of an interactive community forum in February 2023. The event focused on a set of open-ended survey questions that was distributed by PHUSE. We identified our intended audience as a general population of patients and their caregivers. This then also provided the opportunity to gain feedback from the PAIR Network (Patient Advocates in Research), a renowned patient group outside of our original team who worked on our first two video scripts.

Our discussion forum created an open and flexible space to discuss ideas whereby attendees and respondents provided their thoughts, in turn generating several insightful discussions. Shortly afterward, a similar exercise was conducted with attendees at the March 2023 DIA Patient Engagement Community meeting, also comprised of patients, caregivers, and industry representatives with a passion for patient engagement and healthcare literacy. The enthusiasm emanating from all contributors was truly inspiring. The ability to listen, understand their questions, and learn what they want to see is key in our continued journey to ensure our video series can achieve its purpose.

Current Progress and Next Steps

The first pilot videos yielded a combined total of 900+ YouTube views in our 4-month review window, attracting the attention of industry, patient advocacy groups, and consortiums around the world. We are fortunate to have received approval from our PHUSE Board of Directors to continue producing our next videos, with the usual conditions of balancing the content within a reasonable video length. Our group is grateful for the input we received, the discussions and responses, and the success of our first two pilot videos.

We see the evolution of videos in this journey as an exercise for continuous development. Since our engagement with multiple audiences, several new members have joined to provide their perspective. The project has shown us the importance and power of collaboration and how patient advocates and industry collaborators are shaping the development process.

Script development is currently ongoing for our future video topics that will provide more detailed content and explain complex concepts. Future scripts in this series, currently under development, are denoted by an asterisk symbol (*). We look forward to what the future holds for this project.

Recommended Video Order:

Video 0: Introduction (available)
Video 1: Importance of Clinical Trials (available)
Video 2: *What Will I Receive and When Will I Receive It?
Video 3: *What is Clinical Data?
Video 4: *Journey of a Data Point
Video 5: *What is Data Sharing, Why Do We Share Data, and What are the Differences between Mandatory Vs. Voluntary Data Sharing?
Video 6: *What is Data Privacy?

Feel free to come join in the discussion! No matter how big or small your time and input, everyone matters. If you would like to be involved in the project run by our PHUSE Data Transparency Working Group’s “Educate the General Population on Data Privacy and Data Sharing” workstream, please email workinggroups@phuse.global.