Search Results for: social spotlight

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.

Follow Isabel on Twitter @seastarbatita on Instagram seastarbatita_photography and check out her writings on her blog Modelling Change.

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. 

This week it is my great pleasure to shine a social spotlight on Rod Ritchie. A 68-year-old, semi-retired, Australian print and web publisher, Rod uses social media to advocate for guys with breast cancer. His informative website MaleBC.org is a compilation of the latest diagnosis, treatment, and research on breast cancer in men.

I first came across you through my own breast cancer advocacy work and you were keen to remind me that men get breast cancer too. While of course, I knew that to be a fact, male breast cancer is something that I’m less aware is spoken about on social media. How are you using social media to address this?

RR: Social media is at the core of the work I do. Being a publisher and writer, with plenty of media experience, I find the mediums work well for those with the time and inclination to feed the hungry beasts. With breast cancer, men are not always in the conversation. Let’s face it, they are typically loath to seek medical attention and often to even talk to family and friends about medical issues. Research has proved that their later diagnosis leads to a poorer prognosis.

But there are plenty of keen men and many amazing women, patients and medical professionals, who are willing to chime in, share information, and who are very supportive of guys dealing with this disease. I feel particularly privileged to be interacting with medical people and I really appreciate the professional way they share information, their humanity and concern for patients, and the insight they bring to the whole range of topics, particularly on Twitter.  With social media you can be both proactive and reactive.

I love that recognition that we are in this together – that social media can be a meeting point for health care professionals and patients. Can you tell me some more about how you are both proactive and reactive on social media in raising awareness of male breast cancer?

RR: Not so much these days, but a few years ago, most mainstream breast cancer websites were gender specific to women. It was as if they hadn’t heard about men. Every time I saw a Twitter post not gender neutral, I’d react and publicly draw attention to the fact.

Calling out gender blindness in breast cancer Tweets and Facebook blogs seems like a full-time job. I always think it’s a bit lazy of a writer to be neglectful or dismissive of the male perspective, since we go through equal hassles and tribulations during treatment, we have the same concerns about recurrence, and we feel more marginalized than is necessary.

When I see a study or a trial posted on ClinicalTrials.gov, I check out whether men are invited to apply. Then ask, if not, why not. Lack of research on men and breast cancer is holding our understanding and treatment back. It’s also often useful to post a quote from a research article, along with the link, so that my credibility is seen to be linked to scientific research. It’s only by raising your integrity that a social media reputation is consolidated and followers gained.

Correcting misinformation about male breast cancer and reporting on the latest research is most important to me. Since I completed my NBCC Project LEAD patient’s advocate course, I’ve been able to more critically examine scientific reports and technical papers. Where I see a useful study, I link it up on Twitter. I also keep a record of these trials and studies on my website MaleBC.org and my digital news magazine MaleBCReport and use social media to promote these outlets.

Last month, we had Breast Cancer Awareness Month with all the attendant pink hoopla, which to my mind, reinforces the stereotype that breast cancer is a “woman’s disease”. How did you react to this? What did you do to counter-balance this gender stereotyping of breast cancer?

RR: October is a big month. My aim is to have a few memes to spread around and to counter all the pink hoopla that inevitably spreads at this time of year. It always amazes me that breast cancer has become the shopper’s disease and that the seriousness, concern, and anxiety of living with the disease gets swept aside for a sort of celebration of how well managed this incurable disease has become. And while men rightly feel marginalized, I feel very distraught for my metastatic friends who have to endure all the crap that gets posted at this time of the year. I curate the Pinktober Revolution page on Breastcancer.org and have published a specialist site on the topic at PinktoberSucks.com.

As a member of several Facebook breast cancer and prostate cancer patient pages, I’m supporting men (and women) who go there with questions about diagnosis and/or treatment. I’ve been amazed at the similarities between men discussing prostate cancer amongst themselves, and women discussing breast cancer. The men are very open talking about the myriad problems of prostate cancer including sexual side-effects. Just like women are when they talk about breast cancer.

You really do work social media to the max Rod! Take us back a little in time to when you first discovered that social media could be a tool in your activist armor?

RR: After finishing treatment for breast cancer four years ago, and deciding to spread the word that men get breast cancer too, I found my message falling on deaf ears in the mainstream media. Even the so-called “pink charities” were initially deaf to this inconvenient fact, and I discovered their websites were hardly acknowledging men, were very pink, and the institutional mindset was almost entirely women-centered. Alongside this, male breast cancer was an orphan disease, with a low profile and one that, upon diagnosis, left most men in a state of shock and more or less embarrassed to have a “woman’s disease”.

Little discussed, even among men, it soon became clear to me that more could be done to promote awareness. I mean, women had long been aware of and encouraged to do breast screening and self-examination, but men, especially those with a family history of breast cancer, were unaware of their risks. And when they were diagnosed, they were loath to even use the words “breast cancer”. I even know of several men who told their friends they had chest cancer!

I also discovered, that most men disappeared from view after initial treatment, and very often did not want to talk about their experiences to family, let alone in the public sphere. Even major public digital communities, such as Breastcancer.org with nearly 200,000 members, had very few men posting regularly when I turned to it for information four years ago. As in happens, I stayed with that community and now I’m the only man with the disease posting regularly there. Under the username Traveltext, I have made many cyber friends and feel very connected to members of forums such as Pinktober Revolution, IBC, and with the occasional man who comes to the almost moribund Male Breast Cancer boards. These are mostly young men worrying about breast lumps which almost always turn out to be cysts. I appeared in a video to support this charity.

Where men could be reached, however, was in the relative anonymity of social media spaces such as Twitter and on closed Facebook pages. And coming from Australia, where annually only around 150 cases are diagnosed, I had the chance of connecting with some of the 2,500 men diagnosed each year in the United States, and those from the United Kingdom, where 380 guys are diagnosed annually. I work as the stories editor for the Kansas-based Male Breast Cancer Coalition and get to read what dozens of men have been through in the diagnosis and treatment of this disease.

You’re a social media super-user – of all the social networks you use, which do you enjoy the most? 

RR: Twitter and Facebook in that order. All my interactions on Facebook are on closed groups because I don’t want my personal Facebook interactions to mingle with health communications since it is unnecessarily confusing and potentially distressing to friends and relatives to have the option of reading about all the matters that I bang on about. Facebook, without word limitations, allows people to discuss their issues, dispense advice, give treatment experiences, and generally cheer patients up. Some posts are a wealth of information, others are just chatty. But Twitter is no-frills, basic information sharing and is where medical professionals and patient advocates quickly exchange information, answer questions, and post links to sites that contain the full story. The rapid-fire nature of Tweets means it needs lots of attention, but you soon learn to scan and look out for people who regularly post interesting material and comments.

Breast cancer is obviously your main focus. Do you take part in any breast-cancer related twitter chats?

RR: I’m interested in all breast cancer topics, regardless of gender, since treatments for men and women pretty much identical using the same protocols which depend on patient’s staging and cancer type, etc. Notwithstanding this, I zero in on all discussions and research relating to breast cancer in men. I try to catch the weekly #bcsm Twitter chat, which runs for an hour from 8pm Monday EST in the United States. Because that’s 11am Tuesday where I live, it’s often not possible to tune in, but I’m certainly there when my favorite topics are up for discussion.

What advice would you share with others who are just starting out with social media?

RR: I’d suggest spending time getting to know the lie of the land with the topics you are following and the people who are consistently making the best posts.

• Post when you have something meaningful to say, not just for the sake of posting.
• Always be polite, and don’t become embroiled in dramas that arise from conversations outside your experience.
• Like comments that enlighten or interest you.
• Proof your text, since errors reduce your credibility and because you can’t alter posts, only delete them.

I really like that advice, Rod. It reflects a measured and mature approach to engaging with social media that not everyone brings to the medium.  Speaking of mature, I get so tired of the argument that social media is only for young people, — you clearly prove that this isn’t so.

RR: I was in print publishing when the introduction of computers revolutionised the whole process, so I’ve been computer literate since the mid 1980s. As soon as the internet became a solid publishing format 20 years ago, I was there, applying my publishing and writing skills. At one time I owned over 100 web sites. So, age does not weary those of us techies who grow old! And since the average man gets breast cancer at 65, you’re unlikely to get many young guys with knowledge on this topic!

I like to end these interviews by asking for a favorite quote. Do you have one you’d like to share with us?

RR: Quotes are a big thing on social media, especially inspirational ones. But while I like many of them, and I certainly get their value, I feel, as patients, we are hard-wired to expect the worst from your disease and we sometimes need to pay more attention to medical professionals who have seen many hundreds of people in our situation.

Years ago, when I was trying to tell my breast cancer oncologist about my medical worries, she said:  “Never have any pre-conceived notions about any stage of this disease.”

That advice has stood me in good stead as I realized that most of my fears were baseless and I really needed to get on with my life in remission, rather than obsess over what might or might not become a medical issue.

Rod, that’s a wonderfully inspiring piece of wisdom for all of us to take on board.  Thank you so much for taking the time to share with us your social media story.  I enjoyed getting to know your work better and am in awe of all you do to raise awareness and support men with a diagnosis of breast cancer.

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.