Helping the science speak for itself: lessons learned developing video summaries for a precision medicine and health disparities collaborative

Abstract

Skills to effectively communicate research findings are important to expand meaningful inclusion of the public in research, but attempts to summarize findings may be challenging given increasing reliance on succinct communications. Led by our Ethics Advisory Board and within the context of this work with the Precision Medicine and Health Disparities Collaborative, the authors decided to engage in the iterative process of developing video summaries. Our stakeholders taught us to incorporate novel strategies to engage broader audiences, leading to the production of two video summaries, a public summary toolbox and an adapted process for developing video summaries. The authors refreshed the static concept of ‘research summaries’ and found ways of producing summaries which emphasized a dynamic reframing of the shared benefits of science.

Plain language summary

Health communications related to research (like summaries about research studies) are important to the health of diverse communities. It is up to investigators to publicize the findings of their research, and written communications may not be the most effective way of getting the public excited about or interested in science. Our Ethics Advisory Board encouraged us to pursue a more dynamic format to report scientific findings. Led by our Ethics Advisory Board and other investigators of a collaborative precision medicine research center, the authors created two video summaries based on the findings of two research articles. In this article, the authors describe an iterative, stakeholder-centered process of creating video summaries to engage nonscientists in research, and make science more relevant and meaningful to the general public.

Skills to effectively summarize and communicate scientific research findings are not a typical feature of a researcher's training. The importance of these skills is increasing with expanding communication methods and with requirements by funding agencies for public-facing research summaries to be included in dissemination plans [1]. In addition, scientists must be mindful of the ways they communicate, as dissemination strategies could unintentionally create or exacerbate stigma or discrimination against individuals and groups, particularly for vulnerable or underserved communities [2].

The process of developing public-facing communications is no easy feat given that attempts to summarize research findings must tailor jargon, statistics and scientific limitations to the purpose of the summary [3]. The challenge for scientists further increases with the expanding role of visual and video formats that require lower word counts in favor of higher appeal to broad audiences [4]. With society's increasing reliance on short video-based information through social media and other internet-based platforms, the potential for video to communicate scientific and medical information to the public is perched to expand.

Public engagement, an important aspect of science communications, seeks to ‘facilitate the exchange of information, knowledge, perspectives and preferences among groups that differ in expertise, power and values and help them find common ground.’ [2] Science communication that prioritizes public engagement promotes bidirectional learning, demonstrates transparency and goodwill, builds community trust and contributes to successful uptake of findings [2–7]. Several journals now actively encourage their authors to develop video summaries to increase visibility and make their research accessible and available.

With these goals in mind, the Precision Medicine and Health Disparities Collaborative set out to develop public-facing research summaries as a deliverable for dissemination of work done the Collaborative researchers. The Collaborative's early efforts involved the creation of written and graphic summaries for a general audience, for which several publicly available resources were available as guides and templates. However, the Collaborative's Ethics Advisory Board (EAB) found the developed materials to lack both accessibility and meaningfulness. With their input, the authors decided to create short videos as well. A considerable challenge, however, was the lack of existing guidance for making public-facing video summaries of research. In this brief report, the authors share our approach to developing research videos, as well as lessons learned from the production of two video summaries and a resource guide for other investigators interested in this form of dissemination.

Methods

Setting

The Precision Medicine and Health Disparities Collaborative is a National Institute on Minority Health and Health Disparities-funded Center of Excellence that aims to provide a diverse group of researchers with the infrastructure and resources to develop collaborative research teams that use precision medicine approaches to reduce disparities in health outcomes, specifically among African–Americans and Latinx. Within the Collaborative is an Implementation Core, whose aims are to identify barriers and facilitators to the implementation and adoption of precision medicine discoveries, to promote the dissemination and adoption of evidence-based strategies developed through the Center and to address ethical issues including unintentional stigmatization of individuals and communities and addressing privacy concerns related to precision medicine among racial and ethnic minorities. The Implementation Core also supports an EAB, which is a panel of seven community, ethics and healthcare experts, tasked with guiding the Core and responding to ethical dimensions of the Collaborative's work. In recognition of the board's expertise and leadership in community engagement, the authors asked their input on our research summary efforts to ensure the authors' messages were accessible and acceptable for minority communities or to clinicians serving these communities. Their feedback prompted us to explore video platforms to expand the reach and inclusivity of the summaries being produced.

Brief description of test publications

Effective engagement requires trust & being trustworthy (trust video)

In an editorial for Medical Care, Dr Consuelo Wilkins discusses the role of trustworthiness in research practice and community engagement [8]. Wilkins argues that trust continues to be one of the most commonly cited barriers to participation in research, particularly among ethnic and racial minorities. The inherent power imbalance that exists between community members and researchers exacerbates the vulnerability of community members engaging in research. Historical research abuses and poor treatment from health systems have contributed to skepticism and mistrust in underserved populations. Overall, Wilkins suggests that the first step in engaging these populations is to rebuild trust by practicing and promoting principles of community engagement to enhance trustworthiness of researchers and create opportunities for colearning.

Diagnostic algorithms to study postconcussion syndrome using electronic health records: validating a method to capture an important patient population (postconcussion syndrome video)

In an article for the Journal of Neurotrauma, Dennis et al. leverage the emergence of biobanks and their link to electronic health records (EHRs) to validate a diagnostic algorithm that will help identify cases of postconcussion syndrome (PCS) [9]. Dennis and her team of researchers developed two algorithmic approaches to identify individuals with PCS and compared the algorithm's efficacy in ascertaining cases and controls based on natural language processing of narrative EHR text and coded billing and procedure data. The team validated their algorithm and concluded that EHRs are a valuable research tool for identifying PCS.

Written public summaries & visual abstracts

Our public summary process began with the selection of two articles from different disciplines that had been recently produced by our center. These articles were selected due to their varying subject matter and audiences. By creating public summaries from these articles, the authors hoped to develop methods that would be generalizable to diverse topics across precision medicine research. The authors established our intended audience and the target reading accessibility score of a sixth-grade reading level. The authors assessed reading accessibility by using the Flesh–Kincaid Readability Test Tool, along with three other popular readability indicators: Lexile, the Automated Readability Index and the CDC's Clear Communication Index (CCI) [10–13]. The written lay summaries were well received by our EAB members, though several members suggested that the authors include visuals to support the written summary. They also recommended including more of a narrative structure to make the lay summaries more relatable to our target audience. The feedback from the CDC's CCI and our EAB prompted our transition from written lay summaries to a visual abstract platform. However, the EAB expressed concern about the visual abstracts appearing to be too crowded and stagnant. They noted that although the visuals were more engaging than the written lay summaries, some of the concepts were not as thoroughly explained. Our members also raised the concern that many of the graphic images were not representative of a diverse readership. As such, the authors transitioned to video summaries. Figure 1 summarizes the authors' initial steps toward video public summaries.

Figure 1. . Initial process for developing public research summaries.

Video summaries

In-house video production

The authors started our video production efforts by piloting one of the two summaries the authors had initially developed. The authors' first efforts at creating a video summary utilized free video production tools for in-house video creation. The authors used the written summary for the Trust editorial as a guide for our captioning, and in an attempt to make the video summary process as reproducible as possible, the authors sought royalty-free video clips and images. The authors requested feedback on initial versions of the videos from their EAB and other colleagues from within and outside the Collaborative. Individuals that reviewed the video included faculty members and trainees from different public-health-related disciplines and community members.

This early feedback noted that the images overlayed with textual captions were poorly visible and difficult to read. It was also said that the captions were moving too fast, and the EAB recommended adding a voice-over. The authors found similar shortcomings related to lack of diverse images of people, and limited resources for clips that were well suited to the content. This second attempt to produce research summaries again proved disappointing and prompted us to contract a video production company to address the quality and content issues.

Formal video production

After receiving feedback on our in-house efforts, the authors decided – due to our limited expertise in video creation and lack of access to quality graphics reflective of diverse populations – to contact a professional video production company. Video production companies were identified, and products examined leading to the selection of a firm specializing in medical communications. The script used previously for the Trust video was revised and an original script written for the PCS video. The authors again enlisted the help of our EAB for feedback on the language of the proposed scripts. To meet the goals of the Collaborative for examining and expanding the role of precision medicine in underserved communities, the Board recommended adding a Spanish-language version to broaden the impact of the planned video productions. Because the English and Spanish translations were different in spoken lengths, the inclusion of the Spanish language text and narration increased the cost to synchronize voice-overs with video graphics.

In our initial consultation and sharing our plans for disseminating our videos, the video production company helped us determine the type of video treatment the authors should use and contributed to our overall understanding of the video production process. Considerations included choosing among still images or video, animation or pencil animation, as well as the length of our video. The authors then developed a narration script prior to production, which was also reviewed by the EAB. Initial video drafts were then reviewed by the project managers and the principal investigators of the Core. Authors of the articles were then contacted and asked for their input and approval of the video summaries before final production.

Results

Implementation

The video production company provided extensive guidance into the video-making process. Our first consultation with the video production company began with us describing our overall vision and dissemination plans for the videos. The core decided on an ‘animation social media treatment’, which is usually 2 min in length, and includes graphics and/or animation, a voice-over in the select language(s) and closed captioning, and meets quality standards for use online. The selection of the animation social media treatment was largely based on our goal of creating a video summary that would be easily sharable through different social media platforms. In looking through the literature, the authors also found that videos with this type of treatment (e.g., a combination of imagery, audio and written text information) were effective at engaging users and improved comprehension of the topic.

We found that getting video scripts approved by relevant stakeholders early is a key advantage, as once production has started any changes to scripts and narrations can be complicated and costly. For the Spanish scripts, the authors initially sought assistance from translation services but found that their recommended script did not meet our intended reading level. In response, the authors enlisted the help of EAB members and colleagues at our institutions to review the Spanish translation. The authors then encountered an additional need to identify preferences for language styles, formality level and speaking patterns of target audiences in advance. To address the aforementioned needs and ensure the adequacy of our Spanish script, the authors made a forward translation from the original English script, a back translation (Spanish to English) and a reconciliation by a third party in consultation with Spanish-speaking individuals from different Latinx countries and backgrounds. By engaging multiple stakeholders with fluency in both English and Spanish, the authors were confident that our translation, although not a full transcreation, would be well-received and understood by different Latinx populations. Because the translated script and voice-over narration were longer than our English script and narration, the authors worked with their video production company to edit and increase the time of our Spanish video to accommodate the additional narration required. As the authors had not anticipated the extra length of the Spanish translation early in their planning, this led to an unanticipated increase in the cost of the production.

Overall public summary process

Figure 2 illustrates our revised general process for developing public summaries. The five steps include identifying a target audience, defining the message, identifying the desired action by the audience, identifying the most appropriate medium for the summary and engaging in a collaborative coaching process with stakeholders. These steps were informed by the CDC's CCI, which the authors adapted to include the considerations needed for a video summary [13]. The steps along with lessons learned at each step are detailed below.

Figure 2. . General process for developing public research summaries.

Identifying the target audience

Having a clear vision of the target audience is a crucial first step to maximize the impact of research summaries. The intended audience guides the appropriate reading ease and language style for producing the summary and the elements of the report that are of greatest relevance for that audience. Because the Trust editorial asks researchers to reframe their consideration of the public in research, the authors tailored this summary for a research audience, while the summary of the PCS article was written for a general audience. Identifying these target audiences set the stage for our scripts, our goals for our messaging and our dissemination plans.

Defining the message

Defining the message of a research summary requires condensing the information to what is most relevant for the audience. It is not enough to simply summarize results of a research study. For example, when writing the script for a video about a research study on PCS, the authors found that putting in additional information about the syndrome itself (e.g., symptoms, how to identify PCS), rather than just explaining the research, made it more relevant to a general audience. Defining the syndrome and how the data gathered could be used to improve health outcomes clarifies for the audience how precision medicine can lead to improvements in medical care. Additionally, the message points to the benefits of participating in research, which was of value to the PCS team.

Identifying desired action by audience

Here the authors ask what they want the audience to feel or do after reading or viewing the research summary. Is education the goal, or is there a concrete action desired? When an action by the reader/viewer is established, adding resources such as links to subsequent references or materials can facilitate action. Effective public research summaries must answer the ‘so what?’ question to respect the reader and the time expended on reading or viewing the material. This step is arguably the most important of the five. In our case, the video on trust in research was intended to train or educate researchers on the importance of building trust themselves – that is, becoming more ‘trustworthy’, as a foundation of the research relationships with the public, and not putting the burden of trust on the community or research participants. In the video on PCS, a meaningful action was found not in its description of the development of a computer algorithm used to identify PCS, but rather by defining the syndrome and how precision medicine helps us confront its risks, and making connections with research participation.

Identifying the most appropriate medium for summary

Part of identifying the most appropriate medium to display the summary requires really understanding your target audience and dissemination plan. In communicating your research, you should adapt your medium for the characteristics of the population. For example, are they likely to use a specific technology, have there been previous dissemination feasibility studies conducted, and if so, did they identify barriers and/or facilitators to dissemination in this population? As you plan your dissemination, consider the power of social media to expand your reach. In the case of our own work, the authors determined that the Trust summary was written for researcher education, while the PCS summary could be used as a research recruitment tool. The authors also considered several social media platforms and what medium worked best for each platform, as well as the inherent limitations of each platform, such as time and character limits. Popularity of each platform among the target audience was also a key consideration.

Engaging in a collaborative coaching process with relevant stakeholders & advisors

A crucial key to success is engaging relevant stakeholders and advisors early in the process. The EAB was key to guiding our development of more meaningful and accessible summaries. In the case of video production, once begun, any changes to scripted narration or content can be costly in terms of time and budget required. For the PCS piece in particular, looping in the authors at the very first draft would have been helpful. The authors waited until the authors had the draft and an initial rough-cut video before doing so, which resulted in financial constraints to make an edit that could have increased the clarity of the piece. Our Spanish translations required extensive collaborative coaching to ensure that the authors were not compromising the quality of our translation or reading ease.

Public summary toolbox for researchers

We compiled a toolbox from our working list of websites, literature and other resources that were key to summary production. The toolbox contains general information on lay summaries and existing lay summary manuals and guides, such as the CDC's Everyday Words for Public Health Communication [14] and the American Public Health Association's Media Advocacy Manual [15]. The authors also include websites for royalty-free stock images and video clips, like the CDC's Public Health Image Library and B-Roll [16]. This public summary toolbox is publicly available at the VUMC Center for Clinical Quality and Implementation Research website (www.vumc.org/implementation/resources) and will be updated periodically as more resources become available.

Discussion

Engaging with an advisory board in the creation of public-facing research summaries pushed our team to develop new formats and follow a development process that engaged stakeholders' input at multiple stages. Overall, the videos were well received by members of the EAB, authors on each of the publications and members of the Collaborative. Members of the Collaborative noted that while these videos were great dissemination tools, they may also be repurposed for recruiting participants and could supplement study information given to potential participants. Public research summaries and other accessible health communications can play a significant role in developing a scientific culture of inclusivity and meaningful engagement. Utilizing the EAB at various stages was crucial to refining the messages our intended audiences received. Additionally, a key lesson emphasized by the EAB was that language and word choice matter. Other key lessons are summarized in Figure 3.

Figure 3. . Summary of lessons learned.

For the benefits of science to be shared more equitably, and to earn the public trust, research cannot afford to isolate within an ivory tower. In the end, our iterative engagement with advisors who were attuned to issues of ethics and health equity taught us to incorporate novel strategies to engage diverse audiences who are underserved in precision medicine and underrepresented in research. Well beyond just adapting for reading ease, the authors were pushed to experiment with different platforms simultaneously and developed accessible, engaging and representative video formats.

Since this work took place in 2019, the COVID-19 pandemic has heightened awareness of the importance of clear scientific communication [5–7,17]. The WHO described an infodemic, or an ‘overabundance of information – good or bad – that makes it difficult for people to make decisions about their health’ [18–21]. Part of the WHO's strategy for infodemic management is risk communication and community engagement to ensure consistent and reliable support to partners and agencies [21]. More than ever, investigators are challenged to produce information that is clear, easily consumed by the public and less prone to being challenged by proponents of the misinfodemic. Video research summaries have the potential to do just that. Video abstracts are in line with the goals of precision medicine: to provide tailored information that can improve health literacy, medical decision-making and patient outcomes. Video abstracts may potentially offer investigators the ability to tailor health communication to the preferences and/or abilities of their populations.

Limitations

Although our paper adds to the literature of health communication strategies, it should be interpreted considering several limitations. For one, the authors did not test the video summaries with the target audiences, and only had the opportunity to get feedback from authors, the EAB and members of the Collaborative. Second, although our translation process was comprehensive, the authors did not engage in a transcreation process. The authors did not vary graphics by language or make any cultural adjustments that may have been appropriate. Lastly, the authors collected feedback informally, and themes from feedback were not formally coded.

Conclusion

We benefitted from embedding goals of broad accessibility, health equity and dissemination in our early Collaborative development, and not as an afterthought or merely to satisfy a funding requirement. By engaging together in developing summaries, our Collaborative team and our EAB refreshed the static concept of ‘research summaries’ and found meaningful ways of producing summaries which emphasized a dynamic reframing of the shared benefits of science.

Future perspective

One size rarely fits all the sciences, and it is important that researchers work collaboratively with their populations of interest, as well as key stakeholders and their communities to identify the fit that will maximize meaningful engagement. More research is needed, however, to identify other ways to promote inclusivity in the sciences, and investigators are encouraged to engage community members who represent their target audience early on to inform dissemination strategies that will promote inclusivity. Future applications of video summaries may include engagement of potential research participants and return of results to study participants.

Summary points.

• The importance of the role of health communications in health outcomes cannot be understated, and accessible health communications promote health equity in diverse populations.

• Video research summaries may be preferred over traditional written communications due to our society's increasing reliance on succinct communication methods.

• Very little guidance exists for investigators wishing to disseminate their research findings via a video summary.

• We adapted the CDC's Clear Communication Index to develop a process that would accommodate the production of video summaries.

• We used two articles produced by investigators in the Collaborative to pilot test the process. One of the articles focused on trustworthiness and the other on an algorithm for postconcussion syndrome.

• We initially tried to produce the video in-house, but initial feedback revealed the need for greater expertise in video production.

• Engaging the right stakeholders (e.g., our Ethics Advisory Board, the Collaborative and the authors of the publications) and leveraging the expertise of a video production company were crucial in the success of our video summaries.