As part of our series to help the patient engagement community get to know one another, we spoke to Nim Lalvani, Executive Director of the American Migraine Foundation, about advocacy and involving patients in scientific advisory boards
Tell us about the American Migraine Foundation.
The American Migraine Foundation is the premier organisation dedicated to public awareness, education, support, advocacy, and research in migraine and other headache disorders.
The mission of the American Migraine Foundation (AMF) is to mobilise a community for patient support and advocacy, as well as drive and support impactful research that translates into treatment advances for patients with migraine and other disabling diseases that cause severe head pain.
AMF is committed to raising awareness of migraine as a disabling disease to help the community of more than 37 million Americans, and the one billion individuals worldwide living with migraine.
What are the American Migraine Foundation’s key patient engagement activities?
The American Migraine Foundation includes patients at every level. We currently have eight patients/advocates that sit on the AMF Board, 15 patients who work with our patient community and leverage research, resources, and tools to help educate and activate the patient community at large, and a patient advocate that sits on AMF’s Scientific Advisory Board for the American Registry for Migraine Research (ARMR).
AMF relies on our patient advocates to tell us what resources are needed by the community, review our tools, and co-develop any changes to the AMF Website for patient use. Additionally, AMF works with patient advocates to learn from the large patient community their needs and concerns so that AMF may respond quickly and appropriately to provide the tools and resources necessary.
How has PFMD membership helped you in working towards your PE goals?
PFMD has been an inspiration to my career. I got involved when I was the Director of Patient Engagement for the National Kidney Foundation and being an active member at that time helped me understand the principles of patient engagement. That experience encouraged me to want to get involved again when I became the Executive Director of AMF. The multi-stakeholder approach is truly beneficial as challenges are approached from multiple perspectives.
Is the ability to co-create actionable PE tools that members (and others) can use something that you value?
Yes. AMF is a true believer of amplifying, not duplicate. The ability to co-create and push a project forward is extremely valuable.
What is your message to other stakeholders (industry, regulators, policymakers) on the value of patient engagement?
Patient engagement drives incredible value to consumers of health. When stakeholders understand the ways of which to engage patients in their healthcare journey (drive awareness, educate, build confidence, and empower patients) incredible outcomes are delivered. Real-world experience and application are of priority importance to the patient community and it is important that stakeholders understand how to work with patients so that together, with patients, those outcomes are consistent.
