How can we engage people living with Long COVID to help people understand what we know and don’t know about Long COVID?

Situation: 

During the COVID-19 pandemic, people were experiencing a myriad of symptoms the patient community called Long COVID. In response to this new phenomenon, the National Instates of Health launched its RECOVER Initiative amidst more questions than answers, misinformation and a rising lack of trust between people and institutions. This $1.15 billion research initiative brings together scientists, clinicians, patients, and caregivers to better understand, diagnose, prevent and treat Long COVID. RECOVER features longitudinal observational adult and pediatric cohort studies, autopsy and tissue pathology studies, electronic health records, five clinical trials and pathobiology studies.

Task:

I served as the Communication Lead for RECOVER’s Administrative Coordinating Center leading a 25-member, cross-functional team and $5M annual budget to design, launch and manage the RECOVER brand and product platform. I was the NIH’s primary point-of-contact for all RECOVER communication matters, working daily with NIH’s Senior Communication Staff and presenting weekly to members of the RECOVER Executive Committee. 

Action:

As part of this effort, I:

1. Led a 25-member, cross-functional team of communication professionals, content strategists, UX researchers, subject matter experts, product managers, and developers using agile methodologies to design, develop and manage the RECOVER’s Initiative’s communication platform in a multi-phased, iterative approach. Recruited and retained technical delivery staff across product, design, content, accessibility and data science, establishing roles and responsibilities.

2. Established a listening practice to monitor what people are saying online by using tools like AskThePublic and Brandwatch. Each month, we created and shared a report with the RECOVER Executive Committee to guide communication plans, messaging, and how to engage with the public.

3. Developed proto-personas and a communication plan that identified communication goals, objectives, and KPIs. Engaged people living with Long COVID to develop a story strategy.

4. Quickly created, tested, and launched the RECOVER brand, website, and social media with input from people living with Long COVID through UserInterviews.com. This process helped shape the brand, core messaging, and key features, which were approved by Dr. Tony Fauci.

5. Advocated for the message: Long COVID is real, drawing on user research. At the time, NIH was hesitant to use the phrase Long COVID, insisting on using technical scientific terminology. However, this was causing tension and in some cases, harm, as the patient community rallied to be recognized, included and supported by the initiative. 

6. Led the team in developing, testing and making improvements to an interactive data visualization that describes what Long COVID is and who it impacts.

7. Recognized a need to expand the team’s capacity to deliver quickly in a rapidly-changing environment. Recruited and managed two vendor teams to support the work, Communicate Health and Community Partnerships for Health. This helped build equity into the collective team’s CX practice with a focus on health literacy, readability, team positionality and community engagement.

8. Established and managed RECOVER’s Health Literacy and Content Strategy workgroup across SMEs and stakeholder organizations to develop shared understanding and alignment in RECOVER’s content strategy, core messaging, style guide and plain language glossary. Participated in RECOVER’s Public Inquiry workgroup looking at public inquiries, feedback and email data as additional CX touch points to inform communication approaches.

9. Expanded the RECOVER product platform to include an expanded website, researcher portal and monthly email newsletter using GovDelivery. Launched and grew its YouTube channel and developed a social media strategy leveraging NIH and other Federal accounts across Twitter, Facebook and Instagram.

10. Advised the team’s development and delivery of RECOVER’s Patient and Community Engagement Strategy.

Results:

• One-Stop Shop. Served as the government’s “one stop shop” on all things Long COVID while in a still active pandemic, during a time of great uncertainty and patient mobilization. 

• Rapidly delivered. Launched the initial landing page in a 2-month time span to address the high priority nationwide health emergency resulting in 8,100 visitors, 12,000 page views, and 966 PDF downloads in the first month of production. 

• Brand adoption. 36+ organizations use the overall brand system for RECOVER including National Institutes of Health.

• Research-driven messaging. NIH adopted the use of “Long COVID” as a result of the team’s research and advocacy efforts.