Become a Patient Partner for the LFA-REAL Initiative
Why does the LFA-REAL Initiative Need Patient Partners?
People with lupus play an incredibly important role in the development of the LFA-REAL™ system. For this reason the LFA-REAL Initiative has a Patient Advisory Council to ensure that the people with lupus are meaningfully involved throughout the whole development process, including the design of the tool, the creation of materials, review of the study designs to test LFA-REAL™, etc. Our goal is to ensure that the LFA-REAL™ system is relevant to individuals with lupus, is effective, and useful to patients like you. We are taking a comprehensive approach to find patient partners, both online and in-person through our Chapter networks and regional offices, to ensure the patient voice will be well represented throughout this initiative. The Patient Advisory Council is a part of the Stakeholder Advisory Group whose main role is to ensure that different parts of the lupus healthcare, research and patient community are involved in the process of developing this tool.
What is LFA-REAL™?
The Lupus Foundation of America (LFA) is currently seeking patient advocates to bring their perspective to the development of a new, simple tool that helps providers and patients work together to make treatment decisions to manage the symptoms of lupus. The LFA-REAL™ system will help your clinician provide care that is more tailored to meet your specific needs and provide a clear path for you to provide input to get a more complete picture of any changes in your condition. More specifically, the LFA-REAL™ system will track your progress over time, giving a better picture of your symptoms before, during, and after treatment so both you and your clinician can more accurately determine if your treatment is working. Not only does LFA intend that this system will be used to improve overall treatment decision making, we also hope it will support the study of new lupus drugs in the future.
How is LFA-REAL™ Being Developed?
The LFA-REAL™ is being developed collaboratively by a dedicated team of researchers and scientists. However, they will be working closely with a stakeholder advisory group (SAG). The SAG is made up of providers, representatives from health plans, drug manufacturers, and other patients like you. Over approximately 18 months, SAG members will assist in the tool development through regular teleconferences and in-person meetings to review all materials in support of the LFA-REAL™ system. This will include advising on parts of the tool to be completed by the patient, considering the design of studies to test the tool, and thinking about how best to communicate this tool to patients.
What Are the Member Responsibilities?
Member Responsibilities at a Glance:
• Commitment to SAG membership for approximately 18 months
• Approximately 1 hour of your time each month to review materials (e.g., informed consent documents, website pages, etc.)
• 1-hour teleconferences every 3 months to participate in study update discussions
• Approximately 3 in-person meetings over 18 month period (travel and travel related costs for these meetings will be covered by LFA)
As a SAG member, you will be responsible for providing guidance on the development of LFA-REAL™ system to ensure its usability and acceptability in the real-world. As a patient advocate, your voice will help ensure that patient concerns are properly addressed in the system and that the issues that matter most to you about your disease are considered.
A small honorarium will be provided for your time and all travel for in-person meetings will be reimbursed by LFA.
What Are the Benefits to Participation?
As a member of the SAG you will guide development of an important tool that has the potential to help all patients managing the symptoms of lupus. You will be on the forefront of improving the quality of lupus care and have the opportunity to work with likeminded individuals from all walks of life dedicated to improving the lives of individuals with lupus. LFA hopes you will consider adding your voice to the dedicated team working to make the LFA-REAL™ a reality.
How do I Join?
To learn more about becoming a patient partner , please complete this short survey.