Patient Groups Can Involve More Members Virtually

If there’s any silver lining in the COVID-19 cloud, it’s a virtual one. Overnight, the demise of physical events has at the same time enabled patient groups to involve more of their members in key meetings. Moreover, virtual participants are on an equal footing, not poor or distant relations to those who could attend physically. 

We look at two recent examples of patient groups who have managed to involve more of their communities for important meetings.

Virtual meeting for drug development

Two years ago, our parent organisation PatientView explored the experience and views of patient groups taking part in the US Food and Drug Administration’s Patient Focused Drug Development Initiative. This offers patient groups a critical opportunity to make their case to the FDA and other healthcare stakeholders about unmet needs for their communities. 

However, in the early years of the initiative, FDA staff have rarely travelled beyond their offices, and the costs of preparing a powerful case and organising a meeting with the FDA lay beyond the means of many groups. For example, the FDA process is tightly-defined and usually requires a specialist facilitator to help prepare the group to make their case at the event. Travel and hotels were always a key cost for scattered patient representatives too, making physical attendance challenging.

So, it’s been encouraging to see the US-based patient group the National Ataxia Foundation partner with Cure DRPLA to set up the virtual meeting with the FDA for September 25th focused on Polyglutamine Spinocerebellar Ataxias and DRPLA.

Involving the patient community

Announcing this to their community the group summed up the importance of this virtual meeting with the FDA, medical product developers and healthcare providers:

“An important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. 

This input can inform FDA’s decisions and oversight both during drug development and during a review of a marketing application.” – National Ataxia Foundation

One of the most important outputs of these meetings are “Voice of the patient” reports. These capture the key findings from the consultations with patients, and the better the quality and range of patient involvement, the stronger the report. Subsequently, these reports are then used by the FDA when making decisions in the relevant therapy area.

In the launch webinar the team highlighted the importance of patients getting involved:

“This is your opportunity to be part of the process…you can have a meaningful impact on clinical trial design and drug development.” – National Ataxia Foundation/Cure DRPLA

Biggest ever AIDSWatch event

Finally, the power of virtual meeting was clearly shown at the US annual AIDSWatch event. Jesse Milan talks about the success of this event in a blog on the US patient group and advocacy site AIDS United:

“While not meeting in person meant we missed the kinds of fellowship that come with being in person, this was the largest AIDSWatch ever. Going virtual meant hundreds more were able to attend. Through all the channels, more than 2,500 people attended all or part of AIDSWatch. And, now the videos of the sessions are on YouTube, where even more people will get to watch them.” – Jesse Milan, President and CEO US group AIDS United. 


Find out more about the National Ataxia Foundation’s planned virtual meeting with the FDA at…

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Download examples of “Voice of the patient” reports from the FDA at…

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View videos from the virtual AIDSWatch meeting at…

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Visit our sister blog, and twitter #PAGC19, which brings together examples of how patient groups are supporting their patients during the pandemic at…

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