Texas Public Health Journal: All of Us Research Special Section

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Question and Answer Session with the Texas Public Health Journal (TPHJ) Team and The University of Texas at Tyler Health Science Center (HSC) All of Us Research Program (All of Us) Team Editorial Note: Shortly after the Texas Public Health Journal (TPHJ) published the first call for All of Us Research Program content, the program director of the group at The University of Texas at Tyler Health Science Center (HSC) reached out and relayed the group’s intent to submit materials related to their work with this project. Over the past several months as the TPHJ team waited for submissions from other groups across Texas, the TPHJ team and the UT Tyler group planned the content that they would submit to best educate Texans on the importance of the National Institutes of Health’s (NIH) All of Us Research Program. To start off this special section of the TPHJ that will focus on the All of Us Research Program, UT Tyler agreed to a Question and Answer (Q & A) session to introduce the journal audience, and hopefully others, to this unique and ambitious project. The TPHJ team extends our sincere thanks to those listed below who have collaborated on this Q & A segment and the other submissions from this illustrious group.

Carlton Allen, MS, CHW, CHES®, Program Director Carlton.Allen@uthct.edu Paul McGaha, DO, MPH, Site PI Michelle R. Wells, BA, Sr. Brand & Marketing Specialist Rachel French, BA, Marketing Director Michael E. Morris, PhD, MPH, Program Advisor Michelle Crum, PhD, Program Advisor About UT Tyler and All of Us TPHJ: What is the role of the HSC team in the All of Us program?

UT Tyler: Our role is to inform area residents about the program and recruit them through our custom “vanity website” (JoinAllofUs.org/UTHCT) as shown in figure 1. We are part of a “Health Care Provider-lite Organization” project with Washington University of St. Louis and Virginia Commonwealth University looking at ways to improve program participation at their specific locales.

TPHJ: How long has your team been involved in the All of Us Research Program?

UT Tyler: Officially since September 2020. That is when the grant contract started. We didn’t start actively recruiting participants until June 1, 2021.

TPHJ: Can you describe the types of data that are collected from the participants?

UT Tyler: Participants provide information including data from surveys, wearables and physical measurements taken at the time of participant enrollment. Sharing patient data from electronic health records (EHR) is also an option. Participants complete the core surveys which consist of basic demographic questions including questions about their work and home setting. The overall health survey includes questions about general health, daily activities, and women’s health topics, while the lifestyle survey includes questions on tobacco, and alcohol use. There are also additional surveys on healthcare access, personal and family medical history, and other topics like COVID-19. If permission is given, EHR data is reported by healthcare providers and is not participant reported. All of Us removes and/or generalizes personal identifiers from participants’ EHR data. Some participants can provide physical measurements at certain All of Us Research Program partner locations. These measurements include height, weight, BMI, waist circumference, hip circumference, blood pressure, and heart rate. Participants will also have the opportunity to contribute blood, urine, and/or saliva samples for later analysis, including whole genome sequencing. All of Us participants can contribute information from wearable health tracking devices. Wearables track biometric data like heart rate and blood pressure.

TPHJ: Could you comment further on the security of the data included in the All of Us database at the UT Tyler level and the NIH level?

UT Tyler: All data, including EHR data, collected as part of the All of Us Research Program are intended for use through the All of Us data resource. Though information may flow through multiple points between its origin and destination (the Data Research Center (DRC)), interstitial access points should restrict their use of the data only to activities stipulated and characterized in the program protocol and Interconnection Security Agreement (ISA). This award incorporates Vanderbilt University Medical Center as the designated

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Data Research Center (DRC) for the All of Us Research Program. All data are collected under a Certificate of Confidentiality and entitled to the protections as well. Institutions who receive data from this awardee as performance of activities under this award are required to use data only as outlined in the All of Us Research Program protocols, in a manner that is consistent with applicable state and federal laws and regulations, including any informed consent requirements and the terms of the institution’s NIH funding. The DRC applies an interactive risk-based approach to implement security at all layers of the system.

TPHJ: Can you describe your outreach efforts? Who is your target population? What sampling frames do you utilize?

UT Tyler: We are targeting the local population over 18 years of age. We are hoping to attract people from rural areas. We established a digital, community-focused patient engagement recruitment strategy, targeting a combination of under-represented minority, rural, and medically underserved populations in the areas served

by UT Tyler Health Science Center. We have utilized informal communications, medical staff meetings, social media platforms like Facebook, Instagram, and Twitter; lectures, and other networking opportunities. Our recruitment strategies use indirect digital and traditional recruitment. Indirect digital recruitment, while still targeted, refers to a trackable, social media campaign and word of mouth.

Custom bit.ly codes have been created to track all registrations completed through our vanity website that will link back to our custom All of Us URL. For those not familiar with the term “bit.ly code” or “bit.ly link,” these are short, trackable URLs created by the online service Bitly. Bit.ly codes allow you to track click information from links, like showing you how many people have clicked on your link, the time/date of the click, where they were referred from (email, website, social media) and the global location of the people who clicked on your link. These links can be posted anywhere online, used in podcast sponsorships or even on traditional marketing materials like flyers and posters. Bit.ly links are easier to read, memorize and follow, and are good alternatives to QR codes if you are unable to utilize those for your marketing. We have used both bit.ly links and QR codes in our marketing efforts for the All of Us campaign. Using bit.ly codes will help build and maintain brand consistency with branded links, which is incredibly important for any organization or campaign. Being able to fully customize each link as we have done for the All of Us social media campaign, helps to build brand awareness, memorability and increased engagement, while also building trust with participants in the program. Use of the custom bit.ly codes allow for capturing of analytics to determine areas of success and potential opportunities for change. Indirect traditional recruitment refers to using posters and brochures. A custom QR code was added to all brochures and posters that allows for individuals to scan and be directly linked to our vanity website to sign up for the program. Brochures and posters were distributed throughout our hospital and clinic waiting areas and in patient exam rooms.

TPHJ: What are some of the tools your group uses to entice folks to participate?

UT Tyler: First, we inform individuals of the benefits of participating. Participants are partners in the All of Us Research Program. One benefit is that participants will have access to their information and a say in how the program is run. By taking part, they have a chance to support new discoveries that may help their families and communities. By joining the All of Us Research Program, participants may learn more about their health than ever before, including information about their DNA. We have also shared this program with providers and nurses at our hospital. We utilize healthcare professionals to speak with patients about the importance of our community joining the All of Us Research Program. We want to make sure East Texans are represented.

TPHJ: How many participants have been recruited since June, 2021? Do you know if those signing up are actually from your target areas? If someone signs up who is not in your target area, do you refer that record somewhere else, or is that done at the NIH level?

UT Tyler: As of today we have had 53 individuals complete the registration process. That number continues to climb each week, especially as we become more targeted with our recruitment. Of those that have registered, 30 have completed the consent documents to have their data shared with All of Us. Most of those who have registered and consented have been from the East Texas area, since that is our primary target audience. We also have participants from other parts of Texas and even across the U.S. It is always exciting to see how far our recruitment reaches. If someone signs up through our vanity website, we still get credit for that recruitment.

That person can still do everything in the program. If they would like to share their EHR data, then through the All of Us program they would have to request their hospital to share that information.

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TPHJ: What are your suggestions for TPHA on using our journal and our member newsletter to promote participation in the All of Us program and aid the researchers and program participants here in TX? UT Tyler: The mission of TPHA is improving the health and safety of Texans through leadership, education, training, collaboration, mentoring and advocacy. Promoting the All of Us program is just one way that TPHA can accomplish this mission. By using your journal and newsletter, it will give public health professionals across Texas the opportunity to be a part of this groundbreaking program through recruitment or research efforts.

About the Data: TPHJ: How easy is the data to access for research purposes and what type of approvals must researchers obtain before they can begin a project?

UT Tyler: All of Us offers two different access tiers: one for the general public and a second, restricted tier for registered researchers. The All of Us Research Hub matches a broad research community with a diverse set of research participants. The Research Hub houses one of the largest, most diverse, and most broadly accessible datasets ever assembled. It also provides an interactive data browser where anyone can learn about the type and quantity of data that All of Us collects. Users can explore aggregate data, including survey responses, physical measurements, electronic health record information, and wearables data. Registered users can use the Researcher Workbench to dive deeper into the data; conduct rapid, hypothesis-driven research; and build new methods for the future using a variety of tools. To access the data, you must follow an easy, five-step process: 1) Institutions must have a Data Use and Registration Agreement in place with All of Us before researchers can request data access. 2) Register as a researcher, complete your researcher profile, sign the Terms of Service, and agree to the Privacy Policy. 3) Verify your identity using Login.gov. You may need to provide a social security number and a state issued ID. Your institution may also require you to use an eRA Commons account.

4) Complete All of Us research training. The mandatory training course will take approximately one hour to complete. 5) Sign the Data User Code of Conduct. The Data User Code of Conduct is an agreement that outlines the program’s expectations for researchers.

TPHJ: Is UT Tyler involved with any other Texas research groups on specific All of Us projects? If yes, please list them.

UT Tyler: UT Tyler Health Science Center is part of a multiple-institution Clinical Translational Sciences Award (CTSA). We are in partnership with The University of Texas Health Science Center at Houston (UTHealth Houston), The University of Texas MD Anderson Cancer Center (MD Anderson), Rice University, and The University of Texas Rio Grande Valley, formed under The Center for Clinical and Translational Sciences (CCTS). Through the CTSA we work directly with UTHealth Houston regarding the All of Us program.

The Houston CTSA Hub collects data from UTHealth Houston for the patients identified and recruited to the All of Us program. UTHealth Houston maps the data to their Observational Medical Outcomes Partnership (OMOP) data model mapping as required by the All of Us program and then transfers the data to the All of Us Data Research Center.

In addition to research with the All of Us program, through the CTSA, we have been a part of a Health Resources and Services Administration (HRSA) community-based workforce for a COVID-19 vaccine outreach grant, a National Institutes of Health Rapid Acceleration of Diagnostics of Underserved Populations (RADxUP) grant, and a Centers for Disease Control and Prevention Colorectal Cancer Control Program (CRCCP) grant. We also collaborate with MD Anderson on a number of Cancer Prevention and Research Institute of Texas (CPRIT) projects involving cervical cancer and maternal smoking cessation.

TPHJ: Can you describe any current research projects at UT Tyler that use the All of Us data?

UT Tyler: Currently UT Tyler Health Science Center doesn’t have any research projects focused on the All of Us data. We hope to soon have some faculty members initiate the registration and approval process to be able to access the abundance of data that the All of Us Research Program provides. Some of our residents have also expressed interest as well, because of the need to develop research projects.

TPHJ: Could independent Texas researchers partner with UT Tyler on research projects? How could they go about approaching the team there?

UT Tyler: We would welcome the opportunity to partner with independent Texas researchers, or any researchers for that matter. We have a number of faculty that have experience in topics such as occupational health and

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safety, lifestyle change, musculoskeletal issues, pathogenesis of emerging disease, chronic disease mechanisms, public health interventions to improve community health, pandemic preparedness, opioids, etc. The best way to reach out to us would be to visit our faculty and staff directory (https://www.uthct.edu/directory-communityand-rural-health/) and contact us directly.

TPHJ: Is there anything else you would like to share with our readers about this research program or about the involvement of your team in this research program?

UT Tyler: The only additional item we would like to share is just how innovative, unique, and important the All of Us Research Program is. Representation of all populations is so important and that is why we have to make sure that Texans, rural and urban, are represented in this cohort. This is a program that will last for 10 years or more and will allow researchers to study health over time. We also need to make sure that Texas public health professionals are aware of how to assist in directing individuals to enroll and researchers are aware of how to access the All of Us data.

Attribution Statement from All of Us: “Precision Medicine Initiative”, “PMI,” “All of Us,” the “All of Us” logo, and “The Future of Health Begins With You,” are service marks of the U.S. Department of Health and Human Services.

This work was supported by the Center for Clinical and Translational Sciences, which is funded by the National Institutes of Health Clinical and Translational Award UL1 TR003167 from the National Center for Advancing Translational Sciences. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Advancing Translational Sciences or the National Institutes of Health.

Figure 1.The University of Texas at Tyler Health Science Center All of Us vanity website.

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A Health Science Center’s Approach to Online Recruitment Carlton Allen, MS, CHW, CHES® Contact: Carlton.Allen@uthct.edu

Background: The All of Us Research Program (AoU) aims to accelerate medical research in populations traditionally underrepresented in biomedical research, with the help of health care provider organizations (HPOs). The program’s plan is to enroll a diverse group of at least one million people in the U.S. to improve health and treat and prevent disease.

Process: With a mission to improve educational and healthcare outcomes for East Texas and beyond, UT Tyler offers more than 80 undergraduate and graduate programs to 10,000 students. UT Tyler recently merged with The University of Texas Health Science Center at Tyler (now known as The University of Texas at Tyler Health Science Center). Through its alignment with The University of Texas at Tyler Health Science Center (HSC) and UT Health East Texas, UT Tyler has unified these entities to serve Texas with quality education, cutting-edge research and excellent patient care. Classified by Carnegie as a doctoral research institution and by U.S. News & World Report as a national university, UT Tyler has campuses in Tyler, Longview, Palestine and Houston.

Technically, there were three separate organizations that were involved when this project started. Changes in the overall function of each and the interaction of all entities have taken place since the onset of the project. The group contributing to this special section of the Texas Public Health Journal is part of the HSC (now officially called The University of Texas at Tyler Health Science Center). The Health Science Center houses the School of Community and Rural Health which is where the All of Us grant lives. The University of Texas at Tyler (UT Tyler) is now a merging of the two organizations (HSC and UT Tyler) to create a single, integrated university that will more comprehensively serve the educational, health and economic needs of East Texas. The HSC still retains its status as a health-related institution, but has administratively become an instructional unit of UT Tyler. UT Health East Texas (UTHET) is the associated health system that manages the day-to-day operations of the clinical/patient-care enterprise. We all work as one but have different reaches and roles based on the populations we serve. For this project, and still currently, we present separate data below to illustrate how each of the social media operations are run differently by different entities. We wish to highlight the differences and present the different reach, through different platforms, of each organization.

The University of Texas at Tyler Health Science Center’s (HSC) objective was to recruit individuals in East Texas, which is typically an underrepresented population. A large portion of our clinic volume consists of rural residents.

Using the AoU asset portal, and working with our public affairs team, we selected a social media toolkit that provided preapproved content with links to specific assets (gifs, images, graphics, etc.) to use for multiple platforms. We started promoting the program using social media on August 18, 2021, for a total of eight weeks. We used multiple social media platforms of three different organizations within our system that target the same region of East Texas.

The program was promoted on Facebook, Instagram, and Twitter channels for both the HSC and The University of Texas at Tyler (UT Tyler), and on the UT Health East Texas (UTHET) Facebook page. A schedule was developed for each organization that detailed content to post along with bit.ly links that were created with unique URLs that linked to the HSC’s vanity webpage. After the initial eight weeks, we decided to continue the social media campaign for an additional seven weeks (through November 28, 2021) using the HCS and UTHET platforms. “Reach,” which is a social media metric that tells you how many people have seen your post, was able to be tracked. “Reach” is an important metric for understanding how large the audience for your content is and measuring your progress toward spreading brand awareness. “Impressions,” a social media metric that measures how many times your post has appeared in users’ feeds, were captured as well. Unlike with "Reach," you may count multiple impressions for a single user if they have viewed your post more than once. The goal of using social media was ultimately to recruit individuals to register and consent to enrolling in the All of Us program.

Results: During the first eight-week period, the HSC had a total reach of 5,808 and 30 link clicks. UTHET had a total reach of 11,398 and 27 link clicks. Lastly, UT Tyler had a total reach of 32,375 and 69 link clicks. UT Tyler was able to reach a much larger audience, almost three times that of UTHET, resulting in double the link clinks. We combined the interactions across the three social media platforms from the three organizations for the total 15 weeks. Facebook, by far, was the platform where we had the most interaction with the community. There was a total reach of 33,919, a total engagement of 284, and 157 link clicks. With Instagram there were 11,337 impressions, 10,789 reached, and 220 interactions. Twitter had 12,294 impressions and 303 engagements. Using our custom bit.ly links, we were able

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to track visits to the HSC vanity webpage. Each group was slightly different in how they reached people and what people they reached. UT Tyler had a total of 249 visits, the HSC had 266, and UTHET had 127. Even though UT Tyler only participated for the first eight weeks of the campaign, they were still able to drive almost as many individuals to our vanity web page as the HSC. Prior to launching our social media campaign, we were able to achieve a total of 22 individuals registered for AoU over a 12-week period. These are individuals that have visited our vanity webpage as a result of our recruitment efforts and then decided to create an account. After the first eight weeks of our social media campaign, that number jumped to 34 registered individuals and then to 41 after an additional seven weeks.

Future: Social media has continued to influence the way society interprets public health and research information.

The bit.ly links created allowed us to capture analytics to determine areas of success and potential opportunities for change. We hope to use this information to adapt our focus and improve our recruitment efforts for AoU. Since the beginning of the new year, we have restarted our recruitment efforts with a more targeted approach. We have begun to use more videos to engage individuals for longer periods of time and have also chosen to use paid boosting on Facebook to broaden the campaign's overall reach. This project was unique and new for us, in that we had not previously used social media in such a robust way to track engagement, reach, site views, etc.

Lessons Learned: One lesson we have learned is that a program like AoU needs constant attention. When we are actively posting and spreading the word on social media, our interactions correlate with increased reach and impressions, as well as visits to our site. When we aren’t posting and recruiting on a consistent basis, the numbers dramatically decrease. Looking back, we would have started using paid boosting earlier in the campaign and would have allotted more money in the budget for not only paid boosting efforts, but for a paid digital advertising campaign. We believe that one of the reasons UT Tyler was so successful in their promotion of the AoU program was because they used photos of actual students, faculty/staff, and the campus in their social media posts (Figure 1). It would have been great if our budget and bandwidth allowed us to produce custom video clips and/or custom photography to use for our social media campaign.

Figure 1. Sample images used in the UT Tyler media campaign

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