The patient voice is becoming such a valuable asset to medicine, medical research, pharma development and medical conferences. After all you can learn all the technical stuff about the anatomy and physiology in text books but you can never learn just what it is like to live with a certain condition unless you go through it yourself or you have the opportunity to speak to and listen to the patient voice.
As a patient advocate I have had the opportunity to attend many conferences, present at them and network with professionals. I have had mixed experiences at in person conferences and this has also reflected over into online conferences as well.
I must say that this is just my experiences. It might not be the same for everyone and others may not have had some of the experiences I have had.
Involving patients is not new. What is new is that patients have a louder voice now and there is more weight behind their voice. We are no long the token person who gets wheeled out for certain parts of events. We are able to contribute to all parts of events and our contributions are valued. We are being listened too, our voices are being heard and actions are taken as a results of our comments rather than before we would be pacified and a lot of heads would nod yet nothing would change.
Involving patients in an event is more than just the event itself particularly when it is a face to face. There is the travel down, accommodation if needed, food and other expenses as well. When this is done right it is fantastic. I have had one experience which stands out among all others where I came away from the event and felt on a total high because I was looked after and felt at ease. I was given names of contacts, had pre event calls to get to know other people attending. Even the little things like getting from the train station to the hotel, there was someone to pick me up and take me rather than making my own way and then spending a night in the hotel room wondering what I should or shouldn’t be doing. With online conferences this is more tricky and more work needs to be done to include the patient voice but it is not impossible.
I have the chance to speak at a few online conferences. One that I found to be very good from a patient speaker point of view was when I was taking part in a panel interview. I have sat on panels face to face and it is always nice to know a bit about your other panel members before you start. With this one a few days before a what’s app group was created for the panel. I think the aim of the group was incase of technical difficulties but it gave all the panel members a chance to have a brief chat and say who we were etc so we did not feel like we were going in totally blind. This was really beneficial and I would encourage others to use what’s app so panel members can have a chat beforehand if they so wish. I have also had the chance to have zoom calls with panel members too so you can see the faces of who you are talking to. It is also important for the chair as they can explain how they will structure the panel.
One thing I have found with online is that you always run out of time. Particularly if you have a panel made up of only patients you will find there are a lot more questions asked because we are the ones with the lived experience of a condition or healthcare and often people don’t get to speak to patients about more general stuff in the clinical setting. Of course with face to face as patients we will often get accosted by someone after we have presented and will have long conversations so this is not an issue unless you are rushing to give another talk but online there is not this facility really so this needs to be factored in.
I am someone that is very happy to exchange contact details to follow up on conversations but others are not and if time is not on your side often great conversations can be missed. Organisers need to think about this beforehand and think about the best way to make patients feel comfortable.
One thing as a patient speaker at conferences online I have found it can be confusing sometimes to know what platform is being used, what time you are speaking at and who the host of the session is. I had one very bad experience recently where I felt hounded by the organiser because I couldn’t work out how to use the platform (I am someone who is not too bad at tech so it must have been fairly tricky). It just put a really bad taste in my mouth. I was also mucked around with the time of my talk and what panel I was sitting on too. I really felt a bit like a second class citizen. It felt like because I was a patient I had nothing better to do with my life so they could swap things around. They were not pleased when I said no. Organisers need to remember that patients have lives too, more often than not full time jobs, and families too. We often have to take annual leave from our job to attend conferences so it needs to be made worth our while. Many who attend these conferences do so as part of their job so are still being paid, can claim everything back on expenses but as patients we cant do this.
To encourage patients to participate in events there needs to be a lot taken into consideration even when it is online now patients still need to take time out their day to attend. Not every patient will have the latest technology to support platforms, or know how to work platforms. May have disabilities that makes online events more difficult but this should not exclude them it just means a bit more work is needed.
I will always use my platform to advocate for patients and feel proud to have done this fairly successfully particularly around events such as research conferences. I attended one conference that had the strap line “Patients at the heart of research” yet I was the only person there speaking in the role of a patient. I was horrified by this and took to social media and various channels to express my concern about this. I also emailed the organisers too. So the next year there was a large contingent of patients invited to the conference and I was one of 2 patients asked to give the plenary talk along with someone else too. This shows just how strong the patient voice can be and how changes can be made.
Involving patients in events can bring such value to your event and I would encourage anyone to consider inviting patients. The attendees will take so much away from having the opportunities to speak to patients and hear what is really important to them.
The takeaways from this post are:
- Involve patients but put yourself in our shoes. What would you have to sacrifice if you were a patient?
- What would make you feel comfortable?
- What are the needs and can you meet them?
- Compensation? what are they having to give up to be at your event?
- Have a named person for the patient so if they have any issues they know who to turn to.
Some key things I have found beneficial for online conferences are:
- Have a pre meeting so the patient knows who you are
- Have a run through of the platform that is being used
- Think about compensation- just because it is remote does not mean patients can afford to do this for free
- If it is a panel arrange for the panel members to speak to each other ahead of time. A what’s app group works well but remember not everyone will be comfortable with this
If anyone has any questions please do ask me.
ANONYMOUS-ASTHMA 