Social Spotlight: Sue Robins

This week it is my great pleasure to shine a social spotlight on Sue Robins. 

I first came across Sue through her eponymous blog suerobins.com and was captivated by her writing. Her thoughts and opinions on the role of story in medicine and how to affect meaningful patient engagement chime with my own and I’ve been hooked on her writing ever since.

Sue is a New York Times published writer, speaker and mother of three.  Her youngest son has Down syndrome. Her work experience over the past decade includes paid family leadership positions with Kinsight, BC Children’s Hospital and the Stollery Children’s Hospital.  She is also the senior partner in Bird Communications, a health communications company in Vancouver & Edmonton.

Sue self- declares herself a” rabble-rouser” and “health care big mouth”, which tells you quite a lot about who she is both on and offline.  She is passionate (and outspoken) about family leadership, patient & family engagement, storytelling and nurturing compassion in health care, human services and education settings. Sue was diagnosed with breast cancer in February 2017 and has recently completed active treatment. This life experience grants her the unique perspective of being both a patient and caregiver in the health system.

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Sue, I really admire your outspokenness, which I know comes from a place of deep commitment to the ideals you believe in. I’ve been personally inspired by your writings on patient engagement and how we seem to have strayed from the true meaning of the term. Could you tell us some more about the role that social media plays in your activism? 

SR: I participate in patient and caregiver activism and Twitter is one of my tools.  I deeply believe in storytelling, peer support, patient/family power and grassroots leadership in the worlds of health care and disability.  I have a son with Down syndrome and worked as a paid family member at children’s hospitals for many years to bring the family voice into the health care environment.  When I was diagnosed with breast cancer, I added patient advocacy to my basket.  Sadly, in my formal positions, I was never allowed to have an ‘official’ Twitter account – corporate communications departments in hospitals hold onto that power very tightly.

I consider myself a change agent and am always skirting around the edges with my own account, where I have autonomy and freedom to say what I want.  I refuse to be muzzled.

Now I’ve become deeply skeptical because of the professionalization of the ‘patient engagement’ movement.  I often share articles that offer constructive criticism of engagement (#hownottodoptengagement) and highlight the need for humanity in health care.  Twitter is my sharing mechanism.  I’m a writer by profession and also use my account to post essays from my own blog, www.suerobins.com.

I follow you on Twitter and you use it so effectively.  Was joining Twitter when you first started to use social media?

SR: I was an early adopter of Twitter.  When I first moved to Vancouver, I met family and patient leaders through Twitter who became treasured friends and colleagues in real life, like @seastarbatita, @tatterededge, @karencopeland3 and @couragesings.  I feel fortunate to have found these awesome women and we lift each other up every single day.

We hear so many negative things about Twitter these days through mainstream media so I love that sense of lifting each other up. That’s been my experience too.  Can you tell us some more about how you use Twitter in your work?

I have two personalities on Twitter – my health and caregiver advocacy (@suerobinsyvr), my health communications company (@birdcomm). I use Twitter to curate my own news and I’m ashamed to say that while I used to get three print newspapers delivered to our home, my Twitter feed has replaced that.  I try to follow a variety of accounts so I don’t just have the dreaded echo chamber – where I only read news that validates my own (admittedly left-wing, environmentalist) views.

Do you use other social media networks aside from Twitter? 

SR: I enjoy Instagram. I deactivated my Facebook account years ago.  It reminded me too much of high school and I had grave concerns about how Facebook shared people’s information.

I have three accounts on Instagram. I have a guilty pleasure of scrolling through photos of wedding dresses, as my daughter is getting married next summer.  I do carve off my different personas into three accounts.   One is my private family account and the other two are public – @healthsquawk, my rabble-rousing where I post about healing from breast cancer and @foodiesuz, which is a fun account where I post pictures of eating out.  My advocacy work tends to be heavy and often times dark, so it is important to have a joyful interest – food is that for me.

I like that sense of balancing the heavier work-side of Sue with the fun side.  You have a lot of different things going on in your life, so which topics particularly hold your interest? Do you take part in any regular health-related twitter chats?

SR: My topics change depending on what’s up in my life.  When I was deep in treatment for breast cancer, I was obsessed with following #BCSM and folks like @ninariggs, @cultperfectmoms and @adamslisa.  I miss the wisdom of all three of these powerful women.

Now that I’m in what I call cancer healing mode, I do follow those who talk about the gritty reality of breast cancer, including the life of our sisters with metastatic breast cancer, like @the_Underbelly and #breastcancerrealitycheck.

You’ve mentioned some great accounts to follow on Twitter which is so helpful for newbies starting out. Thinking back to my own first forays into Twitter, it can be quite overwhelming.  What advice would you share with others who are coming to social media for the first time?

SR: I’d suggest thinking about why you are on social media.  Being clear about your intention is important with any aspect of your life.  Is it to follow news?  Share articles?  Engage in conversation or debate?

I think it is okay to take a break.  I took a Twitter break for nine months earlier this year.  I had tipped into spending too much time looking at my stupid phone and I wanted to put my head up and be more present in ‘real life,’ especially with my son.  Those notifications are addictive and I had lost balance.  I also had experienced harassment from (white, privileged) men. Now I put my phone in the bedroom when I get home and limit my social media time to early mornings, which feels healthier to me.

That’s valuable advice for all of us Sue, whether we’re new or seasoned social media users!

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

SR: “Your silence will not protect you.” – Audre Lorde

That quote could be written for you!

Thank you so much Sue for taking the time to share with us your social media  story. I’ve picked up some tips and reminders about maintaining balance through listening to you. Wishing you continued success in the work you do.

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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.