Myeloma – Virtual better than reality!
One positive of the Covid pandemic is the willingness of people with the right technology to engage in lively panel discussions. However, as the months pass, these are often so free range that afterwards learnings are hard to digest. By contrast, when Myeloma Patients Europe organised a masterclass on evidence-based patient advocacy, the organisation went to great lengths to ensure that the key lessons from the virtual event were properly transmitted.
Lesson 1: Post recordings of the webinar on real time frames
Just two days after the masterclass, Myeloma Patients Europe posted a recording of the one hour presentation followed by a 20 minute question and answer session, to allow viewers to absorb details. Jan Geissler, a member of the European Cancer Organisation’s Patient Advisory Committee, walked step-by-step from what evidence-based patient advocacy is, to detailed learnings from practical case studies.
By posting the recording so soon after the event, virtual audiences can pace their learning from the presentation, and focus on the parts that matter most to them.
Lesson 2: Make the slides available to download
Jan Geissler’s deck was 38 slides, but well-structured, taking a step back to examine how best to use evidence from a patient advocacy group perspective.
Jan acknowledges some of the challenges patient groups face in using evidence, and moves on to cite examples of types of valued evidence that groups are well-placed to address, such as:
- Adherence to therapies
- Inequalities in access to diagnosis and treatment
- Current care patterns
- Patient preferences on benefit/risk.
Lesson 3: Make navigation easy
Myeloma Patients Europe made it easy to flick through the PowerPoint, find a slide you want, and then locate that slide in the video.
At one point Jan tells how the European Cancer Patient Coalition prepared for EU consultation on the EC Clinical Trials Directive, which required that one study group for a single trial was expected to submit 100,000 pages of copied documents. Jan reflected “We said: `This is not in the patient interest. We have an interest in safe studies, but more paper doesn’t make it more safe.”
WECAN: Pulling it all together
Myeloma Patients Europe is a member of WECAN (the Workgroup of European Cancer Patient Advocacy Networks), which supported the presentation. Their website now includes a useful virtual meetings resource centre pulling together guidance and tools on running and improving different types of virtual meetings, and using online collaboration tools during events.