Online research events for medical charities

Blood Cancer UK – panel discussions

Blood Cancer UK recently held an online discussion panel which includes someone affected by blood cancer, a researcher, and a representative from the charity.

Rachel Kahn, Blood Cancer UK’s Research Communications Manager, told me about the events:

What was the thinking behind these panel discussions?

Traditionally we run physical lab tours to engage fundraisers and donors, but because of the pandemic, we decided to do a series of online panel discussions instead. Initially, we thought to use these events to maintain engagement with large donors. But we realised this would be a great event for all of our fundraisers. We wanted people to directly see projects they were funding, speak with the researchers, and go away feeling inspired to support Blood Cancer UK.

How have the events gone so far? How were they received by your supporters?

We’ve done two events so far, and they have been really well received. Supporters appreciate hearing directly from researchers. For the second event, we did a Facebook stream through Zoom. So far this has had 8,500 views. We’ve had glitches – including the internet dropping off for one of our researchers – but they didn’t affect viewing figures.

What have you learnt that you’d pass on to other charities?

These things take time and a fair number of hours to be successful. But they’re worth it and a great way to bring your supporters closer to the research you fund. Often, charities can act as gatekeepers of research and don’t often allow supporters to speak directly to researchers (us included). Events like this are an easy way to do this. Blood Cancer UK’s researchers are incredible and are keen to be involved. I’m sure your researchers will be, too.

Stroke Association – UK Stroke Assembly

Every year, the Stroke Association runs an event called the UK Stroke Assembly. The main audience for the event is people affected by stroke. Many are people who access the charity’s stroke support services or volunteer for the charity.

Georgina Hill, Research Communications Manager for Stroke Association, tells me how they adapted the UK Stroke Assembly for an online audience.

How did you run the UK Stroke Assembly this year?

This year the event ran as online webinars over a number of weeks. We know from previous years that our audience enjoy and want to know more about the research we fund. So, we dedicated a week of the event to research.

During some of the sessions, we invited researchers to talk about their research and answer questions from the audience. For example, a researcher funded by the charity was invited to speak about their plans for research into a new computerised treatment for vision loss after stroke.

Another session was an open discussion facilitated by charity staff to collect questions for future stroke research as part of the Stroke Priority Setting Partnership.

What did you want to achieve with these sessions?

For our researcher talks, we want the event to feel informal and for our audience to feel they are meeting the researcher in a discussion. The researcher did a short presentation on their plans for research. This includes how they would involve people affected by stroke. We made sure that there was plenty of time for questions, and we emphasised this in the event invite and presentation.

For the facilitated discussion bgathering participants’ questions, we provided an alternative to an online survey. During the Stroke Priority Setting Partnership, we are asking people affected by stroke to tell us their most important questions for research. The online discussion was a good opportunity to involve people that may not want to, or are able to, fill in an online survey. The numbers of participants was limited so the discussion could be effectively facilitated.

And how did the events go?

The session with the researcher talking about vision loss after stroke was well received. It had one of the liveliest discussions from the whole event.

As for the facilitated discussions, unfortunately there were some technical difficulties which meant a few participants found it difficult to join the call or stay connected during the call. This interruption makes it harder to facilitate the discussion. But overall, the 45 minutes sessions were effective in gathering questions to use in the priority setting project that may not have been otherwise captured.

What did you learn that you’d like to pass on to other charities?

Overall, shorter sessions for online events can work really well. It may be harder for participants to remain engaged for longer ones.

For the researcher events, it’s helpful to try and run a practice session with the researcher(s) to ensure they understood your brief and feel comfortable presenting. It’s also helpful to have a charity member of staff to introduce the researcher and support in answering questions.

We encourage people to ask their questions in the chat box, and respond to questions over email if they are not answered during the session. And we record sessions and put them online as soon as possible, so people can watch them later. We find lots of people are ‘watching on catch-up’.

Also, it’s worth thinking about how you can manage tech issues before the event. For example, you could provide a guide to getting online. Or have a dedicated person assisting people with tech challenges.

Epilepsy Research UK – research webinars

Epilepsy Research UK organised their first ever webinar in May to coincide with National Epilepsy Week. After the success of the event, they decided to continue with monthly. Caoimhe Twohig-Bennett, Epilepsy Research UK’s Research & Policy Manager, gave me an overview of how these webinars have gone so far.

What’s the format of these webinars?

Each webinar features a range of speakers including people with epilepsy, clinicians, and lab-based scientists. They each approach a particular theme from a different viewpoint. We want to make research into epilepsy more accessible to our supporters. And to give our researchers the opportunity to speak directly to our community.

How have they gone so far?

The events have gone very well. There is plenty of engagement from our supporters during the webinars and lots of positive feedback afterwards.

A key element to the success of these events is putting people with lived experience of epilepsy front and centre. We start each webinar with a talk from a person living with or affected by epilepsy. This ordering, beginning with lived experience and then through to science, works particularly well. It’s also important for us to also have a balance between clinician and lab-based scientist presenters, to reflect our balanced research portfolio.

Any tips you’d like to pass onto other charities?

We work with our researchers in the run-up to the webinar to ensure that their presentations are accessible to webinar attendees. We ask webinar attendees to submit any questions they have for the speakers in advance of the webinar. This gives the speakers an opportunity to prepare.

We find it’s important to market the webinars appropriately via email and social media to ensure maximum engagement. Interestingly, almost half of registrations for our first webinar are not on our supporter database. So, this is been a great way to expand our reach and engage with more people affected by epilepsy.

Also, think about the technology you use. Zoom can be limited by numbers, and both of our webinars are at full capacity. Livestreaming on Facebook is great as there is no limit to the number of attendees. However, this requires attendees to have a Facebook log-in, which may be a barrier to some.

Blood Cancer UK – panel discussions

Stroke Association – UK Stroke Assembly

Epilepsy Research UK – research webinars

Further reading