Product Details

Author Information

Corresponding Author
Howard Taras
University of California, San Diego
9500 Gilman Dr. #0990
La Jolla, CA 92093-0990
United States
p: 858-657-5143
htaras@ucsd.edu

Authors (listed in order of authorship):
Howard Taras
University of California, San Diego

Rodney von Jaeger
University of California, San Diego

CTRI Community Advisory Board
University of California, San Diego

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Medicine, Health Research

What specific topics does your product address?

Research Study Participation

Does your product focus on a specific population(s)?

Low Literacy

What methodological approaches were used in the development of your product, or are discussed in your product?

Focus group , Interview

What resource type(s) best describe(s) your product?

Training material

Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

This series of short animated videos explains a number of key research concepts in ways that are quick, interesting, and accessible to the general public. Videos use animation and photos to simplify and enhance the content and are intended to promote understanding of and engagement in the scientific research process. They are designed for individuals who are contemplating participation in a clinical research study, especially those who need to build the research literacy necessary to give informed consent. The concepts explained in these videos establish a foundation that can be built upon to explain more complex procedures in a specific research study. Videos are appropriate for individuals who are interested in research but are unfamiliar with core concepts and are available in both English and Spanish language versions.

There are five topics in the series:
“What is a Control Group?” Length: 2 min 7 sec
“What is Random Assignment?” Length: 3 min 1 sec
“Who can participate in research?” Length 1 min 52 sec
“How is research made safe?” Length 2 min 35 sec
“ResearchMatch: Be informed about Studies” Length 2 min 45 sec

These videos were developed to augment existing resources in other media. Written information to explain these concepts is located on the NIH web site “NIH Clinical Research Trials and You.” Researchers and educators are encouraged to make use of existing materials and to include information regarding local resources. Information about how to register for ResearchMatch is available on the ResearchMatch.org web site.

2. What are the goals of the product?

The goal of this video series is to educate members of the general public and help develop a foundation that can be built upon to increase understanding of the scientific process. The desired outcome is (a) a more educated populace that understands and supports research and is more likely to participate in clinical research studies, (b) greater trust in the discoveries of science, and (c) increased acceptance and utilization of evidence-based treatments.

3. Who are the intended audiences or expected users of the product?

These videos are especially appropriate for members of the general public who have a limited understanding of research concepts, who feel disengaged from health research or are indifferent to, or distrustful of, evidence-based health care. They are also appropriate for people who have a basic understanding of research but are seeking clarification of a specific subject matter. Because they are available to the public via the web, it is anticipated that some individuals will use these videos to increase their knowledge and use social networks to refer others to the product. Additionally, researchers and health educators may use these videos in the context of educational presentations and during the process of informed consent.

4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

The product is designed to be accessed by individuals via the internet or used in the context of a presentation or discussion. Ideally a researcher or health educator will discuss the information contained in the video with the viewer to answer any questions and ensure comprehension of the materials.

Education programs with internet access can stream these videos directly from the web to a computer monitor or TV screen. The files can be downloaded and saved to a drive or CD. The MP4 file type is common and, once downloaded, can be used with freely available software to create a DVD that can be used on standard DVD players. Programs are encouraged to have printed materials with information about local research opportunities available whenever these videos are shown.

5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

Many communities share a common cognitive and social understanding of the purpose, process and value of research, sometimes referred to as “research literacy”. Low levels of research literacy can impede participation in clinical research (1). It has been shown that a greater understanding of research is associated with higher willingness to participate (2). Better information is thought to decrease anxiety about research and seems to have, at most , only a small negative effect on research recruitment (3). It has been recommended that academic health centers experiment with various methodologies to engage the community (4). There is some evidence to show that video aids can improve understanding of what will happen in a research study. (5, 6) Community members who advised the developers of this project instructed our academic unit to develop educational materials that empower members of the public to educate themselves. These videos are responsive to advice that products should utilize social media to democratize learning and empower members of the general public. This series was also responsive to researchers who were seeking educational materials to improve access and engagement for people who have varying levels of literacy and preferred modalities to process new information.

6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1. Brody JL, Dalen J, Annett RD, Scherer DG, Turner CW. Conceptualizing the Role of Research Literacy in Advancing Societal Health. J Health Psychol 2012; 17(5):724-730.

2. Tait AR, Voepel-Lewis T, Malviya S. Participation of children in clinical research: factors that influence a parent's decision to consent. Anesthesiology 2003; 99(4):819-825.

3. Cahana A, Hurst SA. Voluntary informed consent in research and clinical care: an update. Pain Pract 2008; 8(6):446-451.

4. Michener L, Cook J, Ahmed SM, Yonas MA, Coyne-Beasley T, Aguilar-Gaxiola S. Aligning the goals of community-engaged research: why and how academic health centers can successfully engage with communities to improve health. Acad Med 2012; 87(3):285-91

5. Tompsett E, Afifi R, Tawfeek S. Can video aids increase the validity of patient consent? J Obstet Gynaecol 2012; 32(7):680-682.

6. Ryan RE, Prictor MJ, McLaughlin KJ, Hill SJ. Audio-visual presentation of information for informed consent for participation in clinical trials. Cochrane Database Syst Rev 2008; 23;(1):CD003717

7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

• For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
• For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
• For other types of work, discuss how the project was developed and reasons for the methodological choices made.

The project that lead to the development of this product was designed to investigate barriers to research participation and adoption of evidence-based research practice that are experienced by members of underrepresented communities. Four partner agencies were involved. Each was selected because it represents a community defined by a distinct and shared characteristic: a common disease/disorder (i.e., Epilepsy Foundation), a common experience (i.e., Veterans’ Medical Research Foundation), a common geography (i.e., Clinicas de Salud del Pueblo, located in rural Imperial County), and a common ethnic, racial or cultural background (i.e., Operation Samahan, serving Asian Pacific Islander immigrants). A focus group of community members was conducted at each agency. Information obtained during these focus groups was analyzed and processed with key informants on our standing Community Advisory Board. This process served to identify those concepts that were most difficult to understand in the context of health research and clinical trials. These videos were developed to empower people by giving them access to these key concepts in a way that is meaningful and relevant. For example, being told they did not meet study criteria and thus were ineligible for a research was a common theme with many saying that this process felt like a personal rejection or a form of discrimination rather than a valid part of the research process.

The objective for this video series was to have an audio-visual tool to increase research literacy that can be used in addition to traditional written and verbal methods for the general public. This product is intended to explain the following to members of the public: (1) the concept of a control group and the reasons they are used; (2) what random assignment is and why it is important for some studies to have this feature; (3) why study eligibility is determined prior to the beginning of the research study, and why using appropriate criteria is important for the success of a study, and (4) the safeguards that are now used in all research studies to ensure participant safety. And (5), because many people are interested in research but do not know how to access it and because many academic health centers use the on line “matching service” called ResearchMatch, an additional video was created to explain this site.

Although this video was produced at University of California, San Diego, there is no conspicuous branding of this institution, so that any institution that conducts research can use this product. It was designed this way in order to reach the broadest audience.

8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

As part of a larger project, a series of four formal focus groups were conducted with four agencies that serve very different U.S. communities (war veterans, rural Latinos, Asian-Pacific Islander immigrants, and persons with epilepsy). These focus groups were designed to help understand barriers to research study participation and adoption of evidence based practices. Information from these focus groups was evaluated with key informants from our Community Advisory Board, which lead to the conceptualization of this product. The Advisory Board is comprised of individuals who are advocates and leaders in their communities and is an existing body that helps to advise on multiple programs. Additional consultation with advisory group key informants occured over the course of product development. Feedback from this group helped prioritize the final content. Institutional expertise was utilized for the technical aspects of the production and for the scientific accuracy of the information. Draft versions of the videos were reviewed by key informants and members of the target communities and their feedback was used to shape the final content.

For example, the reason the videos have no “talking head” or even any people (i.e., all concepts are explained use moving stick figures, photos and voice-over explanations), is so that these videos are amenable to be very inexpensively translated into any language in order to reach a broader audience. This has been done in Spanish, for four of the videos.

9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

As a result of this product, community members have increased access to information that can help them engage in the translational research process, and researchers have access to tools that can help them to motivate individuals to become more engaged in health research and more accepting of evidence-based research practice.

Spanish language translations of these video are also available.

Programs are encouraged to have printed materials with information about local research opportunities available whenever the video is shown.

10. Please describe why you chose the presentation format you did.

Product format was based on the recommendation of the community advisory group and key informants. After consideration of various modalities, it was determined that short videos made available over the internet via social media were the best format for the intended purpose. We were advised that any video longer than three minutes, would not be as effective or as often viewed. Much editing was done to reach this short duration for each short clip.

11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

Availability via the internet and suitability for social network promotion is a strength of the product. Community members felt that it was important that each segment be brief and simple, and we have achieved that. However institutional partners were challenged to maintain comprehensiveness of each topic, if we were to keep the messages as short and accessible as possible and as advised to us by community members. All decisions regarding content and language were evaluated using this guidance. During development, the natural tension between content accuracy and completeness on the one hand, and brevity and simplicity on the other, were central to the process. In the end, all parties were satisfied that an appropriate balance had been achieved. Draft versions of the videos were reviewed by key informants and members of the target communities and their feedback was used to shape the final content.

12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The need for this product is based on information obtained from community focus groups and was identified in consultation with key advisors from the CTRI Community Advisory Board. This group was involved in draft review. The specific people who represent agencies on the advisory group have changed continuously over the course of the past 4 years, and some of the agencies represented on the board also have changed over time. Although attendance records for each meeting over this time were kept, the content of these videos was developed via a community process that did not formally track individual collaborators from the public. As such, individual collaborators from the academic partnership were also not named on the video. During the creation of the product all collaborators approved the final product’s public accessibility. No IRB review was required. This product is the result of collaboration between community members who were key informants, community advisory board members who guided the process, producers, directors and investigators who all contributed in conception and/or development and completion of this product.