Interview: COVID-19 makes physical meetings more difficult, but there is a silver lining: virtual meetings can have lowered cost barriers and reduced the burden of travel. The challenge now is to make online connections more meaningful, says Nim Lalvani, Executive Director of the American Migraine Foundation (AMF)
The COVID-19 pandemic has disrupted patient services and affected patient organizations’ fundraising efforts. It has also presented significant new challenges for running patient engagement meetings. However, as virtual tools become more familiar, new opportunities arise to rethink how the patient voice is heard.
We asked Nim Lalvani, Executive Director of the American Migraine Foundation (AMF), how COVID-19 has reshaped patient care, fundraising and advocacy.
How has the COVID-19 pandemic affected your work at the AMF?
First, the positive: Our work has primarily been driven by virtual engagements of our patient and public communities. Because of this, we were in a great position to continue our work and mission of mobilizing our community for patient support, education, advocacy and research.
The impact was felt when it came to connecting with our experts as we would typically meet a few times throughout the year and develop strategies, but that all had to be done virtually since March.
It was also felt on the patient advocacy side where other organizations that we connect with had to pivot their live events to virtual events, which impacted our ability to convene. Personally, I appreciate the challenge as it has frequently given me the opportunity to think outside the box.
Has it impacted fundraising?
Fundraising has certainly been impacted. It may not have been necessarily impacted from a goal perspective, but it certainly has impacted the way we approach fundraising. Trying to be more creative, sifting through the noise of what is now a crowded virtual space, and having to redo our approach knowing that the landscape of both public and patient communities are focused so heavily on other matters.
What have been the implications for education and awareness campaigns?
Education and awareness campaigns will always play an important role in patient advocacy organizations. What the pandemic has done is to give organizations the opportunity to reconsider the patient journey and how virtual learning can and should be tailored. Without considering the nuances of virtual engagement, you run the risk of overloading the patient community with too much information as opposed to the right information at the right time.
Has the pandemic disrupted patient care in a significant way?
In the US, many institutions and providers moved to telemedicine. Migraine and headache disorders care and treatment can be managed well for the ongoing care of patients. However, it made it difficult for providers to diagnose new patients in the absence of a neurologic exam.
Additionally, those patients who require procedures, like onabotulinumtoxinA for migraine were greatly impacted when institutions were unable to provide those procedures. Currently, there is a varied approach to patient care dependent on the institution and the state. The biggest challenge ahead is advocating for telemedicine to remain as a regular part of patient care without significant barriers as it has given patients access to specialists who may not have been able to see them otherwise.
Have patient engagement activities been disrupted this year?
Yes. We have had to pivot our programs to be delivered virtually. While this is a great opportunity to engage more patients because of the lowered cost barriers – no travel, food, and lodging costs associated with meetings – it has taken the element of connecting out of the picture. A patient community thrives on connection and this is something we are trying to bring in a meaningful way, albeit virtual.
What are your hopes and expectations for 2021?
My hope is that we continue to think about engagement and learning in a variety of ways and not just linear as some may have done in the past. With the lessons learned throughout 2020, it allows organizations to think about the full spectrum of their patient community and how to reach them with key education and support.
