Patient board
The Patient Board is an advisory group made up of people who have lived experience with long Covid. Its aim is ensuring we continue to add value for those dealing with Covid’s devastating effects. We strive towards a diverse Patient Board (gender, geography, disease characteristics, etc.) of about 20 people that is representative of all people with long Covid. The Patient Board is currently in development (May-June 2024).
What does the Patient Board do?
Give feedback on the Toolkit. Things like: What treatments should we research first? What diagnostic tools are most useful to add? What features would you like to see? Are the texts easy to understand? Do you find the Toolkit easy to use?
Make sure groups and organizations in the community are represented. For example, by helping recruit people with long Covid in user tests, and representing the Toolkit in national patient organizations.
Join the patient board
We are currently looking for new people to join our Patient Board, and would love your help improving the toolkit for people like you! It takes about one to two hours per month to be on the Patient Board, and all positions are volunteer roles.
You might be a good fit for the Patient Board if:
You (or your child) currently have long Covid or have recovered from it.
You have a strong online presence and you like to network. You are an active member in other long Covid related networks, such as national or international patient organizations.
You have done some research into long Covid and you believe scientific evidence is important in finding treatments.
You are open and respectful to different perspectives, identities, and lived experiences.
You have a positive and constructive attitude (focused on solutions not on problems).
You are willing to help with representing the long Covid Toolkit in existing communities such as patient organizations.
As a member of the Patient Board, you will:
Help the Patient Board self-organize.
Take part in meetings about once every two months (a bit more regularly while the board is starting up).
Fill in questionnaires about desired features, the development roadmap, etc.
Organize feedback on what treatments the Toolkit should focus on first, and reach out to a larger audience about this (for example via national patient organizations across the world).
Give feedback on prototypes of the Toolkit using a screen recorder.
If you are interested in joining, please contact us.
If you don’t exactly fit the profile, but feel you would be a good addition to the current board anyway, please feel free to reach out. We look forward to hearing from you!
Patient board members
Jacquie Luciano
Jacquie (she/her) is a first generation Filipino-American, wife, and mother of two children. She’s a former Public Health Surveillance Nurse and was working as a Regulatory Consultant until she became disabled by Long Covid and Associated Diseases (LCAD) in January 2022. Jacquie has experienced firsthand the challenges of navigating a complex healthcare system while battling Long COVID and Myalgic Encephalomyelitis (ME), both of which lack FDA-approved treatments. Inspired by her own struggles, she strives for disability and racial justice, aiming to bring about positive change in healthcare and beyond.