Tag: social spotlight

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.

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.

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 I am thrilled to kick off the social spotlight interview series again with one of my favourite people – Jo Taylor.  Founder of After Breast Cancer Diagnosis, Jo is a straight-talking Northerner and a force of nature. A fearless patient advocate and campaigner living with secondary breast cancer, she inspires me every day with her energy and passion.

Jo, I am in awe of the work you do. I know you have several projects on the go, so can you tell us a little about some that are close to your heart right now?

JT:  Currently I’m working on my #abcdretreat .  I held 3 this year and the plan is to get sustainable funding that can support 5 residential a year and other additional ones but not redirecting.  I want to be able to franchise the model as people have now asked my advice in replicating.  I know it works and I can inject the right ideas and know how into producing them in different areas.

A lady from the last retreat wants the franchise in the Isle of Wight!  I’ve also had interest from America and Canada.  Social media reaches the places others can’t.  It’s unbelievable how it’s grown in the last 2 years.  I did a pilot 2 years ago with 9 breast cancer people.  I now know how it works best and people gain so much out of it!  There’s lots of ideas but can’t say too much at the moment.  A business plan is in the process and there are two other grant funds that again I can’t talk about that I’ve applied for.  Only time will tell if these things work out.  Fingers crossed.

I’m also involved in the #busylivingwithmets campaign that started last month in Breast Cancer Awareness Month. While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist.    A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and amazed she became that the illness was side-lined. Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.

NICE, NHS, charities there’s so much not happening and it should be.  Secondary breast cancer patients need a real voice to push policy and make changes – patients need early diagnosis of mets, better treatments and surgeries.  If the government really want the life expectancy to improve and the U.K. world cancer ranking to improve from 17th position, these are the things that are needed to make this happen.

I also am the founder of METUPUK who are looking at the aims and objectives detailed in the graphic below, and we’re committed to turning metastatic (secondary) breast cancer into a chronic disease instead of a terminal disease.

I’m also involved in steering groups for Experimental Cancer Medicine Centre (ECMC) in Greater Manchester and in the Greater Manchester User Involvement programme working in partnership with clinical groups and boards like the Greater Manchester Breast Pathway Board which I attend as Secondary Breast Cancer patient representative.

I truly am in awe of all that you do Jo! So, tell us what role social media plays in all of this work. How did you get started with social media?

JT: All these things use social media to push their profile. I was on Twitter with my own personal account and wanted to see how Twitter worked and how I could use it after creating my website After Breast Cancer Diagnosis – I spent a good year or so researching and understanding how it worked to be able to replicate this with my @abcdiagnosis Twitter account. I didn’t want to just take followers over from a personal account. Many did follow me from my personal account but it grew from there to what it is today.

Which platform(s) do you enjoy using the most?

JT:  I use Twitter as my main platform. I have a Facebook page as well which I then expand on the information from Twitter as FB is wordier. I don’t link one media to the other as I feel it doesn’t work for me. I don’t use Instagram as I don’t feel this is a worthwhile medium for abcd. I find it unrealistic and more of a “celebrity” medium that just isn’t what I want to promote. Life isn’t all about the perfect photo and I am a real person not a posed and promoted one. I also feel this is damaging to people and our children. I don’t feel my “brand” is right on that medium.

I agree that Instagram is all about the filters and the projection of a perfect image, but I wonder if it might be worth experimenting a little to see if you could do something to shake this up? We should put our heads together sometime and see what we can come up with 😉 

I ask all my guests the following question – but I probably should know the answer to the next question already. Which topics interest you – eg do you take part in any particular twitter chats?

JT: Any topics to do with breast cancer, secondary BC, patient involvement, advocacy interest me. I’m also massively interested in exercise with and after cancer so get involved in things to do with these subjects. I want to make a difference for other patients and people living with and beyond cancer. Exercise is something we can all do and at very little cost so I like to motivate people to do this.

I have a closed FB group for people who have been on the retreats and it’s great for them to keep motivated. We also have WhatsApp groups that keep them motivated and connected.

What advice would you give someone just starting out on social media?

JT: Connecting with people and actually chat with them! This is the one thing people don’t always do, they think they will just get followers by no interaction, I’ve seen it. You have to be part of the conversation, don’t be shy, talk, get involved, do Twitter chats, lurk until you feel comfortable in speaking but we all have an opinion and that’s the thing, we don’t have to agree. Don’t feel silly to stick your head above the parapet and have an opinion. Be kind – many people have cancer and sometimes things can be taken incorrectly too (Maybe my Northernness?!) I’ve been on the receiving end and sometimes easy to be misunderstood. Don’t feel silly to say I’m sorry I didn’t mean it that way also, I still can say something and the meaning isn’t taken in the right context. If something happens DM someone and there’s been times I’ve apologised or smoothed things over. Interaction is everything though, it’s just like speaking to someone face to face. Remember don’t say something to someone you wouldn’t face to face. There are real people behind these accounts (most of the time). Block anyone who is continually rude or upsetting. I’ve only had to block three people ever in the last 6 years and most of the time I’ve had only a good experience of social media.

I love that advice Jo, and I agree that is easy for misunderstandings to arise online. I appreciate that you care enough to smooth things over. It’s important that we build and nurture those online relationships we value too. 

So, finally, would you like to share a favourite quote with us?

Favourite quote – too many to choose from but this resonates – no, exercise won’t cure clinical depression but whatever disease or problem, it certainly can make you feel a whole lot better if you try it.

That’s a powerful note to end on Jo, and as healthcare communicators, we both understand the value of a visual to get a key point across!

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.