To share communication tips for engaging patients with research online we partnered with Dr Kate Hill from the University of Leeds. Kate is a Senior Research Fellow at the School of Medicine. She got in touch with us after organising the first virtual Action Mesothelioma Day (AMD) on Friday, the 3rd of July 2020.
The “Meet the Researchers” format was designed to be interactive and face to face. Yet, this format posed unique challenges in delivering equivalent energy online.
AMD 2020 was an experiment in running patient involvement and engagement with research online. Dr Hill is sharing her communication tips for engaging patients to help other researchers better involve patients with research virtually.
What is mesothelioma?
Mesothelioma is a rare type of cancer caused by exposure to asbestos fibres. These fibres are most commonly found in the workplace but also in some cases in the home or environment. Mesothelioma has a long latency period and symptoms don’t start to emerge until many years after exposure. Once mesothelioma is diagnosed, treatment options are limited, and the disease is almost invariably fatal.
The June Hancock Mesothelioma Research Fund (JHMRF) was founded in 1997 to raise funds for research to improve treatment and care. To date, we have raised £2 million and created a portfolio of research projects covering topics that range from basic science to palliative care.
Organising Action Mesothelioma Day
Action Mesothelioma Day (AMD) is a national event held on the first Friday in July. It’s a day when charities and local patient support groups across the UK come together to remember loved ones lost to mesothelioma. On this day, we also raise funds for the vital research needed to overcome the disease.
The JHMRF’s theme for AMD is “Meet the Researchers”. This is an opportunity for patients, their families and friends, and our fundraisers and donors to meet the scientists and clinicians who carry out the research we fund.
The meeting is about engaging people with science. It’s informal and interactive, a blend of speed-dating and Dragon’s Den!
Researchers start with a 5-min pitch about their work (not a lecture). After this, we have 15 to 20-mins of questions and discussion, in small groups.
This year, the COVID-19 pandemic prevented face to face meetings and the JHMRF was faced with a dilemma because AMD is an important event.
We decided to keep our usual theme but to organise the event online, using Zoom.
Fortunately, holding our event online was a popular decision: 84 people signed up for the event and 63 participants joined us on the day.
Below I’m sharing five communication tips that helped us engage patients with our research in this virtual format.
Five communication tips for engaging patients with research online
Our patient group is made up of older, terminally ill people. Not all of them are comfortable engaging with research in normal circumstances, let alone in a video meeting.
With these five communication tips, you can make your online meeting as engaging and supportive as possible.
Tip 1: Exude charisma
Choose charismatic, experienced communicators who can deliver simple, clear and interesting messages in a friendly, non-condescending way.
Long, tedious webinars may be tolerable for academics. Consider avoiding this static format when organising online public engagement events.
We maintained the usual “Meet the Researchers” schedule. We started with a 5-min elevator pitch followed by 15 minutes of questions and discussion.
Tip 2: Encourage participation
Decide how you will handle questions from the audience and brief participants well at the start. With large numbers of participants, it’s not possible for the host to see everyone on the screen. Choose to either:
- use the “raise hand” function
- ask participants to use the chat function to type comments and questions or
- submit a request to put forward a verbal question.
Nominate moderators to monitor the chat or raise your hand indicators. As a rule, one moderator per 25 participants should be adequate.
Tip 3: Have clear housekeeping rules
Keep sessions running to schedule. Allow a short break every hour with a longer, lunch break at the mid-point if you plan an event longer than four hours.
Our AMD event is normally an all-day meeting. Yet, we kept the online meeting to two hours with a 10-min break in the middle.
Tip 4: Keep people engaged
You may encounter awkward silences, or need to get the discussion started. Ensure that the host and moderators have at least one question ready for each presenter or topic. Online silences can feel even more uncomfortable than offline.
Tip 5: Practice beforehand
Hold a practice session to ensure your presenters are comfortable uploading and sharing their slides. If you want to show a video check that your broadband upload speed is adequate to avoid any technical hitches during the meeting. Practice makes perfect!
What did we learn from organising this virtual research engagement event?
Mesothelioma is a particularly difficult disease area in which to achieve involvement and engagement with research, even in normal times.
Our online AMD was popular but the response to our invitations showed that a virtual event did not appeal to all.
Some of our regular participants chose not to join us. They said “It wouldn’t be the same. It was the chance to meet other patients and families that made it special.”
We found that moderators (like our group facilitators at the face to face events) were invaluable and could deal with longer chat exchanges. This was particularly helpful when for example participants encountered problems or needed support during the meeting. For example, not being able to hear because they hadn’t enabled their local computer audio function.
Large online meetings require the host to mute participants centrally to avoid background noise. We opted for a participatory Zoom meeting. This meant that participants could unmute themselves, unlike in the webinar format. Be aware that patient and public participants can be less disciplined than researchers and other professionals.
There are advantages and disadvantages to using an online environment for patient involvement and engagement with research and AMD 2020 was a live experiment.
One disadvantage was that our meeting had a higher proportion of professionals than usual. At the same time, patients from across the UK could join us without having to endure a long, tiring journey to Leeds or incur the cost of an overnight stay.
There were also challenges to delivering the same energy that we normally experience in a face to face “Meet the Researchers” event. Nevertheless, it was a worthwhile experience.
Feedback from the event
We received some fantastic post-event feedback from participants both via personal email messages, and on Twitter:
What an amazing virtual Action Mesothelioma Day #AMD20 #amd2020. Inspirational stories this morning @erasemeso @UKMesoAlliance and then honoured & humbled to present our results with @JHMRF @Prof_Marciniak @Sarah_HSmall this afternoon. Thanks to all involved in the organisation pic.twitter.com/MVaZEpO2SI
— Adrian Dobbs (@APDobbs) July 3, 2020
Another excellent #AMD2020 event organised by @JHMRF. Thank you Kate, the speakers, the patients and everyone else who joined! Big thanks to @Sarah_HSmall for putting us on the meso map and delivering a great talk today😊 #mesothelioma research matters pic.twitter.com/Z6ukSSINZM
— Oana Voloaca (@OanaVoloaca) July 3, 2020
To find out more about “Meet the Researchers” methods and evaluation see:
Hill, K., Portman, M. & Tabi, Z., Meet the researchers: an alternative method of engaging patients with research in mesothelioma. Research Involvement and Engagement 4,33 (2018). DOI https://doi.org/10.1186/s40900-018-0119-x
Many thanks for Dr Kate Hill (@JHMRF) for sharing her five communication tips for engaging patients with research online. Please comment below with your tips.
If you enjoyed this post, you may enjoy reading how to deliver a successful virtual workshop via Zoom or transitioning to online delivery of content in the virtual classroom.
