Meeting Advocacy Challenges in Fungal Infections

Shared Vision for Improving IFI Outcomes: 2023 Patient/Provider Summit
The first MYCology Advocacy, Research, & Education (MYCARE) event

In May 2023, Integrita assisted MYCARE in delivering the first pan-fungal Patient/Provider Summit. The 1.5 day summit was the first meeting of patients, caregivers, and professionals with an interest in improving outcomes across invasive fungal infections.

The Summit addressed the following goals:

  • Gather stakeholders with an interest in the range of fungal pathogens
    • Patients/caregivers
    • Mycology experts
    • Regulatory/government experts
  • Establish unmet needs in advocacy, research, and education
  • Evaluate best practices from other advocacy organizations
  • Define priorities for
    • Advocacy, legislation, policy
    • Research, including discussion of priorities for Patient Important Outcomes with validation
  • Create a strategic and tactical plan

To learn more about the summit and MyCARE, see fightfungus.org.

Advocacy Challenge: Educate healthcare providers and patients about the identification and management of a secondary infection during the COVID-19 pandemic

Backstory: Integrita staff members have enjoyed a long relationship with the Mycoses Study Group Education & Research Consortium (MSGERC). The US Centers for Disease Control and Prevention (CDC) contracted with the University of Alabama at Birmingham (UAB) and the MSGERC to educate about emerging invasive fungal infections in COVID-19 patients. Integrita staff members were brought in to facilitate the initiative.

 

Solution: Working with the CDC, UAB, and the MSGERC, Integrita team members developed the COVID-19—Associated Fungal Infections Educational Initiative (covidandfungus.org). They helped:

  • Reach over 27,000 unique learners in less than a year
  • Develop a Care Step Pathway™ guidance for management of COVID-19—associated pulmonary Aspergillosis (CAPA)
  • Respond to the mucormycosis outbreak in India with infographic education, a Twitter OpenMyc, and continuing education
  • Create patient education materials to engage the large audience seeking information on the web

 

The Disruptive Elements:

  • Collaborating with a scientific society to create practical guidance in real time
  • Pivoting to address the mucormycosis outbreak with novel infographics and a fungal color-coding document to address misinformation in the lay press
  • Engaging patients and caregivers to identify unmet needs and target them with specific information
  • Collaborating with other advocacy/scientific societies (the Infectious Diseases Society of America) to promote and address immediate needs
  • Expanding offerings in Year 2 to address other non-COVID-19 issues, which entails working with other advocacy groups