Creating and Sharing Animated Videos to Communicate ELSI Concepts: An Interview with Mildred Cho

In August, Mildred Cho, PhD, a long-time member of the ELSI scholarly community, and Professor in the Department of Pediatrics, Division of Medical Genetics and in the Department of Medicine at Stanford University, spoke to CERA staff about 14 research tools she recently donated to the ELSIhub Research Tools Database. We asked Dr. Cho to share her vision for the database, her reasons for sharing her work, and the experience of working with Booster Shot Media, a company that creates visual materials for health communication co-founded by Alex Thomas, MD, a board-certified pediatric allergist, and Gary Ashwal, a health communication specialist. Direct links to the research tools shared by Dr. Cho are located at the bottom of this article.           

Dr. Cho donated research tools that were originally developed for use in two projects that she worked on: 1) the ROMP Project (Attitudes about the Ethics of Research on Medical Practices, led by Dr. David Magnus) and 2) the VALUES Project (Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, led by Dr. Sandra Lee). The ROMP Project explored how professionals who review research and the public interpret the risks of research on medical practices. The VALUES Project investigated the perspectives of African American and non-Hispanic White patients, as well as recent immigrant groups understudied in ELSI research including Hispanic, Chinese, South Asian patients, on next generation biobanks.

CERA: Thank you for donating 14 research tools to the ELSIhub Research Tools Database! Why did you decide to donate to an open access database?

Dr. Cho: Our project teams for the ROMP study and also the VALUES study, which came after that, generated some unique tools, including videos that we used in focus groups, that I felt could be useful to other people. We had a lot of requests, especially requests to use the videos, so I thought that donation of these to the CERA open access database would be something that people would appreciate.

CERA: Among other tools, including focus group guides and surveys, there were 8 animated videos created by Booster Shot Media. Five explain the concept and process of precision medicine research and 3 are educational videos about research on medical practices. Could you say a little about why animation was appropriate for those projects and what it was like to develop these resources?

Dr. Cho: One of the reasons we chose to use animation as opposed to say a video of someone just talking with a PowerPoint slide, or something more traditional, is partly because we were explaining topics and concepts, like the learning health care system or biobanking, that we thought were likely to be unfamiliar to our study participants. Our goal for the videos was to provide simplified illustrations capable of effectively conveying information across cultural and linguistic barriers. We did a lot of preparatory work with the creative team to understand how to put the concepts we were interested in into visual form. For the concept of biobanking, as one example, we spent many months figuring out how to turn that concept into a drawing, or something that could be animated in a way that would bring in all the associated concepts that we thought we needed to talk about, such as informed consent, how donating samples works, and how researchers use patient samples. After we tested several concepts and found that they didn’t work as well, we eventually came up with the concept of a library to represent biobanking. It was a really interesting process.

CERA: What did the process involve?

Dr. Cho: We conducted focus groups in which we presented the drawings, talked through some of the concepts, and elicited comments from study participants. We were interested in what the term “biobanking” meant to them. The comments we received inspired us to write a paper, Metaphors matter: From biobank to a library of medical information. Our process demonstrated that a lot of people talked about “banking” as a metaphor for biobanking, but also associated the idea of a “bank” with distrust. The other concept that was captured by “banking” was the idea that when you put money into a bank, it still belongs to you and you still have control over it. You don’t put it in the bank in order to share it with other people! These ideas were completely incongruent with biobanking! We decided not use a banking metaphor because it gave biobanking a negative connotation and was missing a lot of important concepts.

As another example, we were trying to come up with visual metaphors for the concepts of oversight or governance and had the animators draw “ watchdogs”. Unexpectedly, some focus group participants had negative reactions to watchdogs and guard dogs. They saw the animals as aggressive. That was something I hadn’t anticipated. We also tried using referees with different kinds of uniforms to depict “oversight”. For example, we had the animators draw up a referee, a baseball umpire with a mask on, a football referee with the stripes on their jersey, and so forth. People also reacted very negatively to these depictions. Our testing happened to occur during a scandal involving referees at the Fédération Internationale de Football Association (FIFA) World Cup. Our research population was very international and followed soccer so many knew about the scandal. It became very clear that the idea of referees was not giving a clear picture of the concept. We ended up using a relatively boring, non-metaphorical drawing of people who had regular clothes on.

CERA: It sounds like you worked closely with the animators. Could you please tell us about the experience of working with creative consultants to make these research tools?

Dr. Cho: I thought it was very useful that the company had a very intimate knowledge, a working knowledge, of healthcare. One of the founders of the company is a pediatrician, and the other has a degree in health communications so it was much easier to communicate with them about how their animations either served or did not serve our purposes. They were very open to hearing about how they might improve the animation and were familiar with the healthcare and research concepts that we were trying to communicate. They were also really attuned to things like the need to make the videos accessible for people that are coming from different cultural backgrounds.

CERA: How do you suppose your tools and others in the database will benefit ELSI scholars and/or scholarship?

Dr. Cho: I hope that having these videos available for researchers who would like to explain these concepts can be useful. They are very time consuming to make. We also developed the videos in small chunks so that each module addresses a subset of concepts. For example, we have modules devoted to informed consent, biobanking, data sharing, researchers’ use of samples, and electronic health records. The modular format should make it easier for researchers to choose the videos that meet their needs.

CERA: Your donation put us over 100 records in the ELSIhub Research Tools Database. Could you say a little bit about your long-term vision for this collection of research tools?

Dr. Cho: I certainly hope that people will look to this database as something that they should go to first when they are planning a study to see if there is something already there that they could use or adapt for their own studies. I also hope that, in the future, it is possible to compare the results of different studies more directly because researchers have used the same tools or instruments.

Our discussion with Dr. Cho demonstrates the substantial investment that ELSI researchers make when they develop and test novel research tools. Compared to reinventing the wheel, using existing tools promises to more efficiently use research resources and in the long run, may improve the ELSI evidence base by enabling the comparison of results across studies. If you would like to deposit the published or unpublished, ELSI-relevant research tools you have developed in the Research Tools Database on ELSIhub, you can email your contribution to us at [email protected] and provide some basic information (purpose, author, date created, and any relevant citations, as applicable).

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Research Tools from the ROMP Project (Attitudes about the Ethics of Research on Medical Practices):

• General Population and Patient Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
• IRB Member Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
• Which Medication is Best? (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
• Approaches to Research on Medical Practices (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
• Informing or Asking (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
• Patient Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
• PRIM&R Member Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
• Survey Instrument, Attitudes about the Ethics of Research on Medical Practices (RoMP)
• Plain Text Script, Attitudes about the Ethics of Research on Medical Practices (RoMP)

Research Tools from the VALUES Project (Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research):

• Introduction to Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
• Setting up a Biorepository (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
• Uses of Data in Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
• Security and Privacy (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
• Oversight (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research