This week I am delighted to interview Isabel Jordan, a founding member and Chair of the Rare Disease Foundation. Under her leadership, the organization has built partnerships between families and researchers through their Research Micro-Grant Program.
Isabel is the mother of a young man living with a rare disease and has drawn on her post-secondary degree in biology to become a strong advocate for patient partnership in research.
I am a huge admirer of the work you do in forging closer links between clinical researchers and patients and their families, Isabel. Can you tell us some more about the role that social media plays in your work?
IJ: What a great question. I feel like everything I do right now uses social media because I’m fully myself on social media. The project that I feel has used social media the best and where I’ve learned the most has been the #ItDoesntHaveToHurt project with Dr. Christine Chambers.
I talk about this one a lot because she and I met on Twitter – and in fact, she found a lot of her collaborators online. And the point of the whole project was to use social media to get the best evidence-based paediatric pain information directly to parents and families. What information, you may ask? Well, the subjects were chosen based on the input from the parent panel she recruited – I was a part of that panel. While I had been using social media for a long time, I felt like this project used so many platforms – Twitter, Facebook, Instagram to really engage different people where they are. I felt like a real collaborator, not a token.
So you’re a long-time user of social media but can you remember back to the time when you realized that it could be much more than just a way to keep up with family and friends?
IJ: Like most people, I started using Facebook to connect with family and friends far away. But the real magic moment came for me on Twitter. I signed on to it because I had the feeling it could be important for my foundation, the Rare Disease Foundation, but wasn’t sure what to do with it. I started off anonymous because I didn’t really understand the nature of the platform or what I could do with it. But what got exciting for me was when I began to realize that there were whole communities of people out there that I could connect with. There were parts of me that were feeling really isolated – the part of me that couldn’t work any more as my caregiving duties for a child with a rare disease prevented that, the part of me that lived in a small town and wanted to connect with a greater rare disease community, and of course, the part of me that wanted to find other nerdy adults to enjoy and share all of our science and science-fiction fun online. When I started to thank other people for posting things that I found useful, helpful, funny, uplifting, suddenly, conversations started happening. Suddenly, strangers became acquaintances became friends.
Is Twitter your favorite social media platform or are there others you enjoy using?
IJ: Definitely Twitter although I also enjoy Instagram as well. I love taking photos and love art and seeing a visual insight into other people’s worlds is enriching. I find Facebook off-putting a bit, although some community spaces within Facebook have been very really helpful in navigating specific rare disease issues.
I first met you on the #hcsmca Twitter chat (no longer active). Are there any other chats you take part in?
IJ: I loved #hcsmca while it lasted – that’s one of the things that really drew me into Twitter and led to a lot of wonderful connections. I also take part in #hcldr, but the timing is just terrible for those of us on the west coast. And I absolutely adore Liam Farrell’s #irishmed. I’m finding taking part in any of the tweet chats more and more difficult. It’s hard to make time and it always seems like they’re either at dinner time or when we have a medical appointment!
What advice would you share with others who are just starting out with social media?
IJ: It’s interesting – I’ve met quite a few people in person now that I first met on Twitter. And here’s the thing, for the most part, they’ve turned out to be pretty much the same in person as they are online. The people I choose to engage with, the people who get the authentic interactions are those that bring their real selves. So yes, talk about your professional lives, talk about your work, but bring in the other things that give you joy, entertainment, humour. Those are the things that make us human and relatable. And one more thing, recently I’ve come to realize that there seems to be a generational divide, those in my kids’ generation are pretty clear on understanding that the things they put on social media are permanent and potentially public, even if they are on private forums. I think that those that are in my generations (X) and those even younger than me could stand to learn that lesson. If you wouldn’t shout it while standing on a soapbox with others watching, you might want to think twice before posting it on social media.
Super advice Isabel. It seems we still need reminding of this. I also really like your advice about bringing some personality and relatability to social media. We connect with each on a human level, even when that connection is digital. So, I like to end these interviews by asking for a favorite quote. Do you have one you’d like to share with us?
IJ: Well my email signature has included this quote for the past 10 years. And I believe it just as strongly now as I ever did
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has.” Margaret Mead
I love that quote too and I’ve seen it play out enough in our communities to believe the infinite wisdom of those words.
Thanks so much for taking the time to share your social media story with us, Isabel. I continue to be inspired and learn from you and highly recommend others do the same, particularly those who want to learn more about how to engage patients in equal partnership.
This post is part of an ongoing conversation that explores how patients, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.