Objectives

The National Institutes of Health is building a national study population of diverse research volunteers and large-scale studies on the long-term effects of COVID-19. NIH launched the RECOVER Initiative to learn why some people have prolonged symptoms or develop new or recurring symptoms after the acute phase of infection from SARS-CoV-2, the virus that causes COVID-19 (referred to as Long COVID).

More than 500 million people around the world have had COVID. It’s estimated that up to 20% of them could have long-term health effects, making this a significant public health concern. The goal of RECOVER is to rapidly improve our understanding of - and ability to predict, treat, and prevent - PASC (post-acute sequelae of SARS-CoV-2), including Long COVID.

We created the overall brand and website for RECOVER. The RECOVER brand was developed to create continuity across all RECOVER materials and communications. The RECOVERcovid.org website was created to ensure there was a publicly accessible platform for researchers, parents and caregivers, people with Long COVID, advocates, and members of the general public alike to learn about Long COVID and stay informed on RECOVER’s progress. We set out to make this website the central hub for users to find all things RECOVER, including learning about opportunities to enroll in RECOVER studies through coordination with the various institutions involved in the study. Our goal was to arrive at a website that delivered information effectively while maintaining an optimal user experience.

Strategy and Execution

Standing up this website required rapid coordination. Since the inception of the project, our goal was to deliver highly scientific information to the public via a website. There needed to be a mechanism to share information about this initiative and the research undertaking given its tremendous impact on the American population.

What first started as a one-page site, has transformed into a multi-page site with in-depth information, facts sheets, and animation. We worked across multiple government agencies and offices, and multiple academic and research institutions to curate and produce content, data, and documentation. One key feature is the patient enrollment data from the various studies that are updated daily.

This project is different than most because we were operating during pandemic times. We were learning as we were building. Almost everyone in the world had been impacted by COVID in some way. Yet, the research consortium being stood up to execute the research plans for RECOVER was highly nuanced and complex. The size of this research effort is historic in scale and scientific innovation. Communicating the structure, plans, and goals of the research required translating highly scientific information into plain language. To complicate matters more, research is not static. It changes and evolves overtime, requiring our team to be agile and nimble.

Through our process to build the brand and website, we focused on transparency. That meant including on the website lists of experts, scientists, and researchers who are involved in the initiative. We have also published the study protocols and overarching RECOVER research questions. We also developed a page called “What is Long COVID?” to explain what we know and what we hope to learn via research. While we don’t have all the answers yet, we wanted to acknowledge the knowledge gap – the very reason why RECOVER is so important to our future understanding of COVID. We then focused on engagement opportunities, hosting and publishing webinar and event content on the website and providing a mechanism for people to contact the team. As research findings are now coming out, we have a continuously updated page with all research publications stemming from RECOVER that is populated from the National Library of Medicine Medline database. There are also multiple pages available in Spanish, which were developed through transcreation and included materials testing with Spanish-speaking individuals.

This website would not be possible without the intimate collaboration of individuals with many different professions from many different institutions – ultimately all with the same goal of findings answers about Long COVID with the hope of not only knowing how to treat it, but also how to prevent it.

Key Elements:

• Insight into what we know and don’t know about COVID: What is Long COVID page and Fact Sheet
• Communicating highly complex research in plain language: How Research Works
• Gathering research together in one place: Publications
• Offering insight in past and future events: R3 Seminar Series
• Transparency into the initiative: Leadership
• Enrollment Figure on the Homepage: Adult enrollment (11,266); Pregnant Adult Enrollment (1,364); Pediatric Enrollment (2,435) 

Results

Our team considers the brand and website a success for many reasons:

• We developed a distinct brand that differentiates the initiative from other government efforts
• We have a strong brand identity reflected in all our digital products 
• The website is updated on a daily and weekly basis to ensure the most up to date information is available to the public
• Information for multiple priority audience segments is available
• We have conducted nearly 20 research activities to understand our audience and their needs and perspectives. The website is updated based on evidence to achieve the best possible user experience
• We are sharing novel information with the public
• We have had nearly half a million website views since the Fall of 2021
• Nearly 21,000 downloads of website materials have occurred since the Fall of 2021

While we have more to accomplish, and look forward to doing so, we have built the foundation for a sophisticated digital experience. This government funded effort takes out the mystery of research and engages people in meaningful ways.

We also consider this a success due to the data sharing across multiple institutions that takes place in order to make this website a reality. The ability to do so helps bring answers so desperately needed.

Media