Smell and Taste Disorders: Building STANA's Capacity for Patient Engagement in PCOR/CER (STEP)

Background: The National Health and Nutrition Examination Survey estimates there are 13.3 million Americans with smell or taste dysfunction and it is expected that the population will increase by 3 million due to COVID-19 effects. Yet, with few funded clinical trials, the U.S. lags globally in PCOR/CER on taste and smell disorders. Also, a lack of routine smell and taste testing inhibits diagnoses and patient identification. The Smell and Taste Association of North America (STANA), formed in 2021, is addressing this through its mission to provide a voice for people with smell and taste disorders and its commitment to PCOR/CER.

Motivation: STANA is motivated by the lack of chemical senses’ CER and need for more engagement between stakeholders to advance PCOR/CER. As part of a PCOR/CER working group, STANA helped administer a patient survey and garner an overwhelming response, creating a rich source of patient lived experience information to inform PCOR/CER. STANA must work quickly to address patients’ needs and engage with researchers and clinicians at this critical time.

Goal: The goal of this project is to build sustainable capacity for increased PCOR/CER through outreach, education and awareness.

Objectives:

1. Facilitate engagement among stakeholders to learn more about PCOR/CER and incorporate patients’ lived experiences
2. Build a community of patients and allied organizations
3. Create awareness of the benefits of routine smell and taste testing to support more PCOR/CER

Activities: STANA will engage a seasoned researcher to identify insights from the patient survey that can inform the creation of deliverable content. The project team will hold workshops with stakeholders and will attend relevant conferences to facilitate engagement among stakeholders, share findings, inform PCOR/CER with patients’ lived experience, and create awareness of the benefits of routine testing to support more PCOR/CER.

Deliverables:

• Roadmap with actionable steps to build sustainable capacity to promote PCOR/CER
• Representative cohort of patients ready to engage in PCOR/CER
• Educational content co-created with stakeholders
• Co-created Guidelines for engagement between clinicians, researchers and patients
• PCOR/CER lay research agenda

Projected Outcomes and Outputs:
Short-term outcomes during the project period include:

• A standardized approach for STANA to serve as a convener of stakeholders, ensuring a shared focus on PCOR/CER
• Cultivation of a representative patient community to actively support PCOR/CER
• Network of stakeholders with shared understanding of smell testing to support more PCOR/CER
• Capacity to sustainably promote PCOR/CER
• Capability to communicate content in lay language

Medium-term outcomes (0-2 years post-project period) include:

• Outreach to research networks and clinician organizations to build relationships
• A multi-stakeholder working group
• An online U.S. patient community providing support, information, and resources

Long-term outcomes (3+ years post-project period) include:

• A platform to champion regular smell testing to aid in diagnosis and patient identification
• Plain language communications to engage more lay audiences

Patient and Stakeholder Engagement Plan: STANA will use its communications channels and programming for reciprocal engagement with patients/caregivers, researchers and clinicians and organize workshops and meetings to exchange insights, seek input and collaboratively gather feedback on deliverables.