Tag: social spotlight

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Social Spotlight: Siobhán Freeney

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This month’s social spotlight is shining on Siobhán Freeney – a tireless advocate for lobular breast cancer and the associated breast cancer risk with breast density. 

Hi Siobhán, I’d like to start off by asking you to share with us your path to patient advocacy. What set you on this path?

SF: I was diagnosed with Stage 3C Invasive Lobular Breast Cancer in December 2015. I really struggled with my diagnosis because I had no family history of breast cancer. I’m very Breast Cervical Screening aware – always attended for my mammograms and only had a clear mammogram 5 months earlier.  I noticed that my right nipple was inverting ever so slightly and requested an immediate referral from my GP. My diagnosis was immediate following a Triple assessment.  There was no ambiguity about a forthcoming mastectomy, which would follow after four months of dose-dense chemotherapy.

I have always had an inquisitive mind and so when I was told by the Breast Nurse not to Google, that’s exactly what I didn’t do!!! I quickly discovered there was a lack of information about Lobular Breast Cancer. Thankfully this has improved, mainly due to Patient Advocacy Groups who have begun to engage with researchers and clinicians in raising awareness.

Around the same time I was diagnosed, I came across an article on Breast Density.  I was completely blown away by the statistics on associated breast cancer screening risks from AreYouDense.com and the wonderful woman who started the Grassroots Breast Density Advocacy Group in the USA, Nancy Cappello.

And then you set about educating women in Ireland, where you live?

SF: Yes, I set up www.beingdense.com in Feb 2016.  The purpose was to inform (Irish women in particular) women, about the Breast Cancer risks associated with having Dense Breasts.

  1. Breast Density is an independent risk factor for developing breast cancer. Women with the densest Breasts are four to six times more likely to develop breast cancer.
  2. Mammograms are less likely to find early breast cancers in dense breasts. Mammograms miss 50% of breast cancers in the densest breasts.

It is not palpable and has nothing to do with size or shape.  Mammographic breast density is considered to be a woman’s personal biomarker for cancer and can only be determined by a mammogram.

Related Reading: Breast Cancer Survivor Knew Something Was Wrong WIth Diagnosis

How is breast density assessed?

SF: The radiologist who reads your mammogram can easily see how dense you are.

Breast Density is assessed using 4 levels

A             Mostly Fatty

B             Scattered Fibro glandular

C             Heterogeneously Dense

D             Extremely Dense

In the UK and Ireland, women are NOT routinely notified when their mammogram determines that they have dense breasts.

That lack of awareness must have shocked you. Is that when you started using social media to raise awareness?

SF: Yes. I began sharing research links and building awareness on FaceBook initially  at https://www.facebook.com/breastdensityreporting/

In retrospect, I was quite sheepish about patient advocacy at first, I didn’t want to upset the status quo too much.  I’ve learned that education and knowledge are the foundation blocks for change and great advances never come from comfort zones.

That’s so true! Your website Being Dense is now well-established as Irelan’s breast density awareness and education site. What other things have you achieved since setting up the site?

SF: In 2019 we co-hosted with Breast Predict, the first-ever mammographic breast density seminar in The Royal College Of Surgeons.  This year I took part in the Marie Keating Foundation #NotJustPink Campaign for October. Last February I spoke at a favourite event of mine, Choirs For Cancer in UCD, organised by Precision Oncology Ireland.

I’m a founder member of Lobular Ireland www.LobularIreland.com  This has been a real passion of mine.  Invasive Lobular Breast Cancer is the sixth most diagnosed cancer in women and the second most common subtype of breast cancer.  Lobular Ireland is a growing advocacy, interacting with researchers, clinicians and breast cancer organisations.  Lobular is my subtype of breast cancer and I’m keenly aware of the lack of research that has been carried out until very recently.  Patient advocates have proven to be a powerful tool in raising awareness and collectively can really bring change.

I was awarded a scholarship to travel to the 2nd Lobular Breast Cancer Symposium in Pittsburgh, USA this year but Covid had other plans and unfortunately, the event is postponed until 2021.  Meanwhile, we engage and collaborate with the Lobular Breast Cancer Alliance.  At the end of September, Precision Oncology Ireland agreed to support Lobular Ireland and together we held a very successful webinar with the amazing ILC Expert, Professor Steffi Oesterreich from @UPMCHillmanCC.

I’m also involved in AIS Advocates in Science with Susan G Komen and participate as much as I can.  In my spare time, I studied with the IPPOSI Patient Training Program and graduated with 25 other like-minded advocates in November 2019.

Another platform I’m very involved in is the European Lobular Breast Cancer Consortium http://www.ELBCC.org.  I’m the Irish patient advocate to the Consortium. There are several European Countries involved with leading scientists, epidemiologists, pathologists, lobular researchers and patients working together to enhance awareness, improve screening methodologies, fund lobular specific clinical trials and treatment options for invasive lobular breast cancer.  I attended their 3rd Annual meeting, in Leuven and we have just had our first virtual meeting.

You’re certainly kept busy with your advocacy work. When it comes to social media, which platforms do you like to use?

SF: I enjoy using both Facebook and Twitter.  I have a different following on each. I find FB great for patient advocacy support and building relationships with breast cancer community.  I try to spend about equal amounts of time on both.  I like to keep content fresh and interesting, evidence-based and factual.

It takes a lot of time to source and prepare content and make an effort to keep my breast density blog up to date too.  Methinks I spend too much time overall, but I would really like to keep the momentum going for as long as I can.

My popular Hashtags for #BCAM2020 October have been are #IAmDense #TellWomen #IAmLobular #LivingWithLobular and #NotJustPink with The Marie Keating Foundation. I’m currently trying to get my head around Instagram @aboutbreastdensity, it’s a work in progress. Can I give a shout out to #LitlleGoalsBigWins Barbara Croatto @bcroatto a wonderful Graphic Design Artist who has just designed a new Infographic for BeingDense.com. I love it thank you.

You certainly can Siobhán.  It’s a lot of work –  and of course unpaid work. Patient advocates like you really are the unsung heroes of healthcare.  Do you have time to take part in any Twitter chats on top of everything?

SF: I am so bad at participating in Twitter Chats, I always mean to make time and forward plan for them.  It’s an area I would like to work on.  There’s a lot to be gained from them, I know that from the ones I have taken part in.  I spend an awful lot of time as it is on social media though as it is.

Twitter chats are great but you are already doing so much! I think it’s important that we don’t feel we have to be everywhere at once. It’s easy to get overwhelmed with social media and all its tools and platforms. Do you have any advice for someone starting out with social media? 

SF: Be confident about your message.  Know your audience.  Keep it real.  Take it slowly and post relevant content.  It’s not a race to the finish, enjoy it.

I love that advice Siobhán – particularly the last part.  So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?

SF: I have so many quotes in my head – I love using them.

Here’s one from Maya Angelou, a strong independent woman, a woman of integrity, someone I have always admired, greatly.

‘Without courage, we cannot practice any other virtue with consistency.  We can’t be true, kind, merciful, generous or honest’

I love that quote and very apt – as I know you are a person of great courage, integrity and kindness. 

Thank you for taking the time to share your story and the role that social media plays in raising awareness of breast density and lobular cancer

SF: Marie – you’ve been such a support since I met you in 2018. You were the Guest Speaker and Moderator at an Irish Cancer Society Seminar in Dublin. Back then I would never have guessed that I would be here talking to you like this today, so thank you. You have created a uniquely positive platform for Patient Advocates. I truly value the relationships, advice and support that I’ve received from other amazing Advocates within your Weekly Round-Up of favourite Blogs on Twitter. 

I’m truly humbled by your words Siobhán. It’s been a pleasure and an honor to watch from the sidelines as you have grown your advocacy activities both on and offline. 

If you’d like to learn more about Siobhán’s work, visit her website http://www.beingdense.com Follow her on Twitter @breastdense.

This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

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Social Spotlight: Sara Liyanage

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book-cover

I recently caught up with Sara Liyanage, author of Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer. 

Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help. The website provides practical advice for each step of the way, together with many signposts to other online resources and lots of personal stories.

Hi Sara,  I’d like to start off by asking you to tell us how you got started with social media. What prompted you to get involved?

SL: In 2017 following treatment for breast cancer, I set up a website (www.tickingoffbreastcancer.com) for people going through breast cancer treatment and those trying to move on after treatment. The website is a simple one: lots of practical tips and links to good online resources. There’s a lot of information across the internet that people – who in a vulnerable state due to their cancer diagnosis – aren’t finding or accessing because they are are either too nervous to research the web for resources and/or they are overwhelmed with what’s available. I aim to do the research so they don’t have to. I’m constantly updating the links to new information as and when I find it or I’m directed to it by people who I chat to on social media. I also publish a guest blog every week from either an expert (such as a lymphoedema specialist) or someone who is going through or has finished breast cancer treatment. In September last year my book was published (Ticking Off Breast Cancer). This accompanies the website by providing simple practical advice and also talks about my own personal experience of having treatment for breast cancer.

Was the launch of your website your first foray into social media? 

SL: I started using social media when I launched the website. I’d created a site that I was hoping would help people going through treatment, and I then needed to get this site out to those people. So I set up accounts on Twitter, Instagram and Facebook to help raise awareness of the website. I soon realised that using social media wasn’t just about raising awareness of my site – it was about becoming part of a cancer community and helping people that way. A lot of people turn to social media when going through cancer. There is a huge community of people providing help and support to those, whether by words of encouragement, sharing practical advice or providing tips for treatment. I found myself in this community and joined in.

I love the idea of social media being an extension of community – it’s something that resonates very strongly with my own work too.  Which social platforms do you most enjoy using to build community and share information? 

SL: I enjoy using all three platforms (Twitter, Instagram and Facebook) and I’ve found that they all work well in different ways. For example, Twitter is good for chatting about a topic and sharing tips and resources that I come across. Instagram is good for sharing personal updates and interacting with people on a more personal level. And Facebook works well for providing links to useful websites, articles and to things I post on my website.

Which particular topics most interest you online?

SL: I tend to focus on supporting people as they go through breast cancer treatment and try to move on once treatment ends. So I look out for good tips, advice and resources that would help someone in this position. For example, I share articles that I’ve come across that deal with treatment side effects; personal stories from people going through it; articles on exercise and nutrition; recipes; reviews of cancer books; information about support groups, networks and centres; and anything that might be of use to someone going through or finishing treatment.

Do you have any advice for patients using social media?

SL: On balance, social media can most definitely provide more support than discouragement, but for anyone dipping their toe (or whole body) into the social media cancer community it is worth remembering:

1. Use it carefully.
2. Don’t get too invested – dip in and out.
3. Be kind and understanding of others.
4. Don’t take anything too personally.
5. Don’t compare yourself to others.

And if you do all of this, you will hopefully benefit from what is, on the whole, an incredibly warm and supportive place to visit.

Great advice Sara. So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?

SL: Oh there are too many to choose from!! I love a good quote and I started each chapter in my book with a different quote that resonated with the subject matter of the chapter. I guess, I would say that one of my favourites is, “She stood in the storm, and when the wind did not blow her way – and surely it has not – she adjusted her sails.” Elizabeth Edwards.

I love that quote too. What a great note to end this interview on. Thanks so much Sara for taking the time to share your social media journey with us.

If you’d like to learn more about Sara’s work, visit her website www,tickingoffbreastcancer.com Follow her on FaceBook, Twitter and Instagram.

This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

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Social Spotlight: Barbara Jacoby

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I’m delighted to kick off the 2020 series of Social Spotlight interviews with award-winning blogger, and founder of online cancer support community Let Life Happen, Barbara Jacoby.

Barbara has contributed her two-time breast cancer journey, patient advocacy mission and domestic abuse experience to multiple online publications that have touched readers worldwide.

Hi Barbara,  I’d like to start off by asking you to tell us how you got started with social media. What prompted you to get involved?

BJ:  When I was diagnosed with breast cancer for a second time in January 2008, my husband suggested that I put my thoughts and feelings on paper as my way of getting out my emotions. He promised that if I did, he would find a way to share my writing. True to his word, he created the Let Life Happen website that was named the same as the title song of a 15-song CD that he and I had created together in 2002 and he continues to handle all of the technical aspects for the site.

How wonderful to have that support and to have someone to share the success of your work. How has your mission and your site evolved over the years?

BJ: For more than 12 years, I have been writing a weekly blog as my central platform on my website. As I expanded my mission over the years, I added a daily “in the News” feature nearly 7 years ago and a “Clinical Trials” feature just 3 1/2 years ago And now I have been fortunate enough to have a “Paid Opportunities for Cancer Patients” feature on my site for 6 months as a result of the input received from other organizations who are striving to find such gigs for the patient and caregiver communities.

Twelve years is a long time in the social media world. You’ve seen many new social platforms emerge in that time. Which platform(s) do you enjoy using the most?

BJ: I have a great appreciation for all of them as each has a very distinct purpose. LinkedIn is the one where I have been able to best interact with other medical professionals and patient advocates. Twitter is the easiest way to get out a very concise message about something that I want to share. Facebook is of utmost importance for a number of private communities where information is shared among those dealing with similar issues. Intstagram has been a perfect place to provide a short inspirational message from a quote taken from my blogs. Pinterest has been a great place for the sharing of such things like hairstyles, beauty tips, recipes, etc. for those who are or have received treatment that has changed their physical appearance and needs.

Are there any social media that you consciously avoid?

BJ: I avoid everything audio for a couple of reasons. First, as a paralegal for a business unit in a large corporation, I have seen too many people sued for words that were spoken and were either misquoted or misinterpreted. As I do not have either a nonprofit or any other business entity for my work, I can’t afford to be sued as I don’t have the money to defend myself in even a frivolous lawsuit. Second, and perhaps more importantly, when I listen to someone else who is providing information, if I take notes, I miss all of the subsequent info while I am writing. And if I hear something of particular interest that I want to share further with others, my mind wanders off to thoughts of what to say and how to best present it. And third, I find it more difficult to record a presentation and then go back and listen and stop and start the recording over and over rather than to just be able to read something and deal with each point as I go.

Do you have any advice for those who are just getting started with social media?

BJ: Do your best to decide in advance your exact purpose for being on any social media platform, the audience that you want to reach and be flexible enough to change your course as needed as you go. Nothing is ever going to be perfect so just do the best that you can and your audience will know your heart from the work that you share with them.

What super advice  Barbara. I’d certainly agree with you on this. So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?

“If you can’t say anything nice, don’t say anything at all.” – Margaret Atwood

I love the age-old wisdom in that quote. Thanks so much Barbara for taking the time to share your social media journey with us and continued success to you.

If you’d like to learn more about Barbara’s work, visit her website www,letlifehappen.com and follow her on Twitter @letlifehappen

This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

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Social Spotlight: Terri Coutee

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It’s my great pleasure to shine the first social spotlight of the year on this week’s guest interviewee. 

Terri Coutee is the Founder and Director of DiepCFoundation.org, a nonprofit organization providing education and resources to empower women and men with information to make an informed decision about options for breast reconstruction after mastectomy. After a second breast cancer diagnosis and her own successful breast reconstruction, she writes about her experience in a blog, DiepCJourney.com.

Terri is a guest speaker and a strong proponent of the shared decision-making process for patients. When traveling for advocacy, she interviews surgeons, healthcare providers, and patients on topics related to breast cancer and breast reconstruction as another resource to empower those in need of education to find their own voice in their healthcare journey.

I’ve known and admired Terri for several years through our interactions on social media. She is a real force for good through her online patient advocacy and a ray of sunshine with her positive motivational style.

And now here is Terri’s social media story. 

Hi Terri,  I’d like to start off by asking you to tell us something about the role that social media plays in your work.

TC: My platform as a patient advocate for breast reconstruction evolved from using social media. I utilize Twitter, Facebook, Instagram, LinkedIn, Pinterest, and Google Plus to reach a global audience for various purposes.

Twitter is my go-to for connecting with the breast cancer and breast reconstruction community. I search for the latest studies and news to share with those who may not be using Twitter. One of my favorite projects is to report from medical conferences I attend.

PSTM photo.jpg

The global community becomes more of a family when you meet your Twitter pals at conferences. The energy and ideas are limitless. I frequently receive direct messages on Twitter asking for specific resources, so it has served me well.

You sure do know how to make full use of so many platforms. When did you start using social media – what prompted you to get started?

TC: Oddly enough, using social media started for me in an entirely different way than what I am doing now. At the time of my second breast cancer diagnosis I was in graduate school to get my M.Ed. in Teacher Leadership. I set up a Twitter account using an anonymous name, so I could be one of those “lurk and learn” social media people. I used the handle, @6state, because I taught schools in six different states.

I knew very little about any social media platforms and had no idea the power of social media at the time. Unbeknownst to me, having successful DIEP flap breast reconstruction after a double mastectomy would be the catalyst for starting a blog about my experience utilizing social media to share my story. I suppose I have nostalgically stuck with the handle @6state. Once an educator, always an educator.

One of the things  I love most about these interviews is getting to learn something new about people I’ve known online for a while. I never knew what prompted you  to use @6state as your Twitter name – that’s s a fun fact for me to learn. I probably interact most with you through Twitter, but I know you’re very active on Facebook. How do you like to use Facebook in your work?

TC: Facebook has been a place of support and solace for a growing number of members in a closed group I set up: https://www.facebook.com/groups/diepcjourney/about/. Women and men who are currently in treatment or planning extensive surgery don’t always have the time or inclination to leave their home to attend a support group meeting.

The Facebook group is a safe haven for many. It is another way of connecting globally. We have members from all over the world. Additionally, we are honored to have medical professionals including surgeons, physical therapists, radiologists, and support resources like tattoo artists who are welcome and lend great value to the group. The resource I provide through these professionals is priceless. I feel very strongly it brings great credibility to the site. The emotional, positive support the members bring to the group is what inspires me daily.

I have found great value in setting up a separate Facebook account for the nonprofit group I founded in 2016, DiepCFoundation. It keeps my followers informed of the Foundation’s activities, outreach, and pertinent topics related to breast reconstruction, including my blogs.

Facebook live is another great way to share topics related to breast reconstruction. Viewers can watch, re-watch, and share the broadcasts with others in their own community. One I am most proud was a presentation I made this year. It was recorded at the national medical conference of the American Society of Plastic Surgeons on a topic I focus on in my work as a patient advocate, shared-decision making.

Shared Decision Making.jpg

You really are rocking Facebook! Let me take you back to Twitter for a moment. Do you take part in any health-related Twitter chats? 

TC: I have been a host on #TweetChats providing information for breast reconstruction. They are fast and furious but preplanning your comments and hashtags makes them far more effective. I participated in a #bcsm Tweet with The American Society of Plastic Surgeons and one of their board-certified plastic surgeons. Living Beyond Breast Cancer invited me to a tweet chat with my own plastic surgeon and others in the breast reconstruction community to coincide with National Breast Reconstruction Awareness Day in October.

Social media obviously plays a vital role in your advocacy work so what advice would you give to others who are just starting out with social media?

TC: Take it slow and don’t be overwhelmed by the wealth of information before you or the speed things seem to travel at with constant changes in social media. As I always say, take it one bite at a time!!!

Educate yourself about all social media platforms. They each serve a different audience and purpose. Give them all a go!

Surround yourself with a tribe who will support and believe you are serious about your message.

Read articles and attend seminars to improve your skills. Know you will make mistakes, receive critique, but also get euphorically hooked on a tool that shares a wealth of valuable information to the world and in particular your viewing audience, your true purpose for using social media!

Such great advice Terri. I love your enthusiastic embrace of social media and your championing of the creation of an online tribe.

So, I like to end these interviews by asking for a favorite quote. I know you are a big fan of inspiring quotes and I always appreciate you sharing them on social media. Do you have one you’d like to share with us now?

The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward.

                                                   -Amelia Earhart-             

What a wonderful quote! 

Thanks so much Terri for taking the time to share the many ways in which you are making a difference using social media. 

If you’d like to learn more about the work that Terri is doing in raising awareness of DIEP flap breast reconstruction, you can find more information at DiepCFoundation.

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. 

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Social Spotlight: Karin Sieger

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This week I caught up with psychotherapist, writer and radio host, Karin Sieger to learn more about how she uses social media in her work. 

I first met Karin online through our shared connection to breast cancer.  I  admire greatly Karin’s writing and her generosity in sharing her wisdom and advice to support people with life transitions, particularly the emotional impact of life-changing illnesses, such as cancer.

Hi Karin,  I’d like to start off by asking you to share something with us about your professional background and how you got started using social media.

KS: I am a psychotherapist and writer based in West London, UK, where I see clients privately and from where I also offer support globally online via Zoom and email. Prior to my training, I worked 20+ years in consumer and media research (including BBC World Service and AOL). I was first diagnosed with breast cancer in 2012 and diagnosed with a local recurrence in 2018. Since that experience a lot of what I do focuses on working with and supporting people affected by life changing illnesses, grief, anxiety, personal development and uncertainty. On many levels it has also become a watershed experience in my own life. I had to make choices about my wellbeing, future and finding purpose for the life I have. In many ways I have started finding my own voice creatively and that’s when and why my engagement with social media started.

How do you use social media in your work? Is social media the right fit for professionals in this space?

KS: At present, I use social media mostly as communication channels to share my motivational self-help articles, YouTube videos, radio programmes, quotes and raise awareness of projects I run myself, or that I am involved in. I am also using it to network.

Being on social media can be a challenge for counsellors or psychotherapists, as a lot of our training encourages us not to share our own experiences or private lives with clients. Because it may get in the way of the work and take the focus away from the client. For example, how do people who want to work with me feel about my own cancer experience? May they perhaps hold back from talking openly about their own concerns for fear of upsetting me? Things like that. I am always mindful to ask these questions at the outset, and assure people that I am ok doing what I do, despite my own experiences. In many ways I do what I do because of my own experiences. The impact of poor physical health (esp cancer) on our mental health is rarely covered in our training. I am trying to raise awareness and offer specialist support.

In our profession we have to keep boundaries and be clear about ethics. Therefore it took me a long time to take the plunge, and my activity online has evolved over the years and in many ways become more personal. I have to regularly check in with myself about it.

I really like how you’ve found that balance between your personal history and professional life. I know it’s a delicate balancing act – and not every professional can get it right. Of all the social networks we have available to us, which one do you use the most?

KS: Twitter was the first platform I used. In terms of frequency and volume, I use it most often. It’s familiar, I enjoy the interaction with the Twitter community and it’s easy to use. I have a professional (not private) presence on Facebook, LinkedIn and now also Instagram. I have tried Medium and others. But due to lack of time, I cannot keep it all going. A lot of my writing is reposted elsewhere online which creates more social media activity (via PositivelyPositive, The Mighty, Thrive Global, HuffPost).

While I enjoy social media, I also have to be careful how much and when I spend time on it.  Things have changed a lot since I have started using a scheduling software, source images via Pixabay or Unsplash and gradually use Canva to create ads for my radio programmes. Before I would literally do everything manually, with my own images. It’s not sustainable and started causing too much stress, which is just not healthy for me at this stage in my life.

I know from following you over the past 6 months, that you have a number of exciting new projects on the horizon. Can you tell us some more about them?

KS: I have launched a number of projects.

  • #CreativeDespiteCancer which supports the creative efforts of people affected by cancer. I offer to feature anyone interested for free on my website and social media network (writers, artists etc). 
  • #DearKarin is a free advice column I run on my website, where I offer support for a range of topics people are welcome to contact me with.
  • Most recently I have started contributing weekly radio programmes for a new global online Mental Health radio station PeaceWithinRadio.com The programmes are recorded on my orange houseboat in the Thames and mostly unscripted. You can catch up with previous broadcast via my YouTube channel.
  • #CancerAndYou is broadcast Wednesdays and offers support with the emotional and mental impact of cancer. Recent topics include cancer and relationships, why a cancer diagnosis is traumatic, cancer anger and more.  
  • #SoulCravings is on Saturdays – 20 minutes of down to earth talk about a whole range of topics important to us all, like how to turn hopelessness into hope, coping with grief, how to think big and much more.

Wow. You have been busy! We both share the same interest in cancer, but are there any other topics you follow on Twitter. Do you take part in any Twitter chats?

I have not yet fully participated or run twitter chats. I am very impressed by #bccww, but since it is in the evenings, it’s too late for me. Cramming everything in alongside cancer treatment and earning a living is a fine balancing act.

As far as topics are concerned, cancer is important to me. But I don’t want to be pigeon-holed, as cancer is only one part of my life. That’s why (personally) I have stopped referring to my life as a cancer journey. I feel more comfortable with life journey. I am very much into nature, self-care, embrace difficult topics and generally love to think creatively.

I let you into a secret. My first tweet of the day now tends to get generated at 06:30, when I start my morning routine by lying on an infrared mat and listen to classical music. I look at online photo galleries until an image “speaks to me” and then I turn it into a quote for Twitter and Facebook, sometimes also LinkedIn and Instagram. Whatever I come up with may or may not also reveal something about me.

Oh I love that image of you waiting for the muse to strike first thing in the morning. What a creative way to approach things. Do you have any other advice for those who are just getting started with social media?

KS: Avoid impulse responses. Don’t take things personal. Don’t derive self value from social media.

Very wise words Karin. And speaking of wisdom, I like to end these interviews with a favourite quote or saying. Do you have one you’d like to share?

Whoever you are, wherever you are, whatever has happened, positive change is possible.

What a positive note to end on. Thanks so much for taking the time to share your social media journey with us Karin.

KS: Thanks for inviting me on, Marie, all your fantastic work and exposure you give us all.

 

If you’d like to learn more about Karin’s work, visit her website www.karinsieger.com and follow her on Twitter @KarinSieger

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. 

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Social Spotlight: Chris Lewis

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This week I caught up with Chris Lewis, patient activist extraordinaire.

Over a decade ago Chris was diagnosed with stage4 Mantle Cell Lymphoma (a rare blood cancer) and given six months to live. Aggressive chemotherapy followed plus a stem-cell transplant from an unrelated donor via the Anthony Nolan charity.

The next few years was a rollercoaster of hospital stays as Chris battled medical complications. He saw first-hand how disjointed the cancer support sector is and so he started to address the issues he found most concerning through his blog –  Chris’s Cancer Community.

This has become the most popular cancer blog in the UK and Chris is frequently invited to speak around the world about his experiences. Most recently, he has set up simPal, a unique charity that gives free phones and sim cards to anyone affected by cancer.

This is Chris’s social media story. 

Hi Chris,  I’d like to start off by asking you to tell us something about the role that social media plays in your work.

CL: I am the founder of Chris’s Cancer Community and Co- Founder of SimPal, the only charity in the world providing free mobiles and pre-paid simcards for people affected by cancer. None of this would have been possible without social media. My work is known across the globe and I do several international speaking trips every year. I am now the most influential cancer patient in the UK.

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When did you start using social media – what prompted you to get started?

CL: My illness started in 2007, and I had absolutely no knowledge of social media. My health was unreliable and I was in and out of hospital. I began to see how poor support was for people living with cancer and wanted to know if it was only me who felt like that. I have a business background and started asking around. Friends of mine created a very simple blog to start with. My ‘community’ started to grow, my work was winning awards, and the rest as they say is history.

It’s wonderful to see how far you’ve come since those earliest beginnings. You now have a presence on several platforms, which is your favourite?

CL: No competition here, it is Twitter! I use Facebook and Instagram too but Twitter works best for me. Short and sharp engagement is key. I have a reasonable following which is continually growing. Although cancer is a big part of what I do, I like to mix things up a bit and speak on current issues, whatever they might be. Also my big love of football! I have been using social media for more than 7 years now, and wherever I am speaking in the world, there are people in the room who follow me, and that is a nice feeling!

Which topics hold your interest the most on social media?

CL: I am particularly interested in the subject of ‘patient engagement’ As a business guy I was shocked when entering the cancer sector, how little effort was put into this. It seems it was mostly box ticking. We are customers of the system, in whichever country you live. Rarely do we have and serious role in designing systems and tools to help us. I don’t know any business that does not talk to its ‘customers.’ Surely they are the most important part of your work? I used to do many twitter chats but as my work has exploded I have so little time to get involved. I find I must limit myself on social media or the entire day can be gone before you know it!

Do you have any advice for others who are just starting out with social media?

CL: Firstly establish what you want to achieve on social media! Many people are purely there because they feel they have to be. Ask yourself what does success look like for you? Most people are on there to ‘sell’ something, be it a product or a service, but just like in real life it is how it is done is the real key. Unless you listen and engage with others they won’t with you. Remember to listen more and speak less, that way you will learn quickly. Finally, we all started with no followers!!

Oh that’s so true Chris! 

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

 I think kindness is my number one attribute in a human being. I’ll put it before any of the other things like courage or bravery of generosity or anything else. Kindness—that simple word. To be kind, it covers everything to my mind. If you’re kind that’s it.

― Raold Dahl                                                   

We sure could do with more kindness in the world – thank you for the reminder Chris! And thank you for taking the time to share your social media story with us. 

If you’d like to learn more about the global work that Chris is doing you can find more information at Chris’s Cancer Community and SimPal.

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. 

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Social Spotlight: Ross McCreery

Posted on by Editor

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This week my social spotlight is shining brightly on rare disease patient advocate Ross McCreery.

Ross is the founder of CRPS (Complex Regional Pain Syndrome) Awareness Day in the Province of Saskatchewan, Canada.  This is an initiative designed to educate and raise awareness for CRPS, a rare autoimmune disease which Ross was diagnosed with in  2006.  His diagnosis of CRPS was followed a few years later by a secondary diagnosis of Osteoarthritis.

Ross is also involved in initiatives with the Rare Disease Foundation to help establish Peer2Peer support.  He is a tireless advocate for research and treatments that he hopes will one day lead towards a cure.

Hi Ross, I’d like to start off by asking you to tell us something about the role that social media plays in your work.

RMC: For the last thirteen years I have lived with and advocated for the rare disease CRPS (Complex Regional Pain Syndrome). For those of us living with this disease, there are very few treatments, no cure, and very few resources. It is known as the most painful chronic pain condition there is, and some people refer to it as the suicide disease.

The basis of the work I do is to try and educate and raise awareness for this disease. The scope of my work is extensive from working with other patients and researchers to the healthcare system and government. I was successful three years ago in lobbying our government in creating a CRPS Awareness Day here in the Province of Saskatchewan.

I am also involved in various online projects the main being my blog called Painfully Optomistic which I started as a way to support, teach, and raise awareness for CRPS.  And I work with organizations such as iPain Foundation ( NERVEmber ), Clara Health (BreakthroughCrew), WEGO Health (Patient Leader), and Color The World Orange to take part in numerous online initiatives that they run.

When did you start using social media – what prompted you to get started?

RMC: I started using social media within the first two years of my diagnosis for two reasons. One was because I live in a Province that has very little support for those of us diagnosed with CRPS. No physician in my city could diagnose me, and I went through two incredibly difficult years finally getting diagnosed in another province.

It was really the whole experience of how I had to be diagnosed and everything I went through that caused me to create my blog Painfully Optomistic. I didn’t want others to have to go through all of that, so the purpose of this site was to try and be a support at the same time as trying to educate others on what I already knew about the disease.

The other reason I started online though was because I needed a community around me that I didn’t have that at the time. Getting involved in communities on Twitter, Facebook, and through my blog gave me that. I now have a network of not only patient/advocates but friends who I can rely on for support and to ask questions when I need to.

I think that feeling of isolation, particularly when you are a rare disease patient, and the desire to be part of a community who really “gets you” is a big motivator in many patients and advocates turning to social media.  You’ve mentioned your blog along with Twitter and Facebook communities as key resources for you.  Which of these is your preferred platform to communicate on? 

RMC: The platform that I seem to use the most is Twitter. Although I am using Facebook more and more as I become more involved in my advocacy work. I tend to use the Facebook Live aspect of the platform the most. These platforms allow me the opportunity to come together with other patients/advocates, medicals professionals, and caregivers to grow and learn from one another.

This kind of peer-to-peer learning is a vital part of online advocacy. How about health-related twitter chats? Are there any regular chats you take part in?

RMC: I participate in regular chats such as #wegohealthchat, #PatientsHavePower, #patientchat,  #CreakyChats, and sometimes #hcdlr on Twitter. All of these chats allow me to be a more effective and empowered patient leader through learning from a variety of perspectives. I can stay informed on new treatment options, clinical trials, or even how to work with medical professionals as part of working towards a common goal which is to find treatments and cures.

It isn’t really about being interested in just one thing but what can I learn from these different patient/advocates, professionals, caregivers, or whoever it might be. It’s about “how can I change things within myself and the work that I do to better help others including myself”.

Social media obviously plays a vital role in your advocacy work so what advice would you give to others who are just starting out with social media?

RMC: The advice that I would have for someone starting with social media is to really think about what your needs when it comes to social media. Start by using the form of social media that is going to best serve your needs. The social media world is huge and we don’t always need every platform that is available to us. Ask yourself why you are using that platform? Are you using it just because everyone else is? Or does it really serve a purpose for what I really need it for? Streamline and make sure that you are using that platform effectively and that your message isn’t getting lost.

I really like this advice Ross. It’s easy to feel as if we need to be everywhere at once to make an impact, but knowing where to be to make maximum impact is more important.

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

RMC: One of my favorite quotes:

 Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it

                                                   -Michael Jordan-             

What a great quote! Thanks so much Ross for taking the time to share the many ways in which you are making a difference using social media. 

If you’d like to learn more about the work that Ross is doing in raising awareness of CRPS, you can follow him @Rossco006 and check out his blog, Painfully Optomistic.

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. 

Posted in social spotlight

Social Spotlight: Pat Rich

Posted on by Editor

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This week it’s my great pleasure to chat with Pat Rich, an Ottawa-based medical writer, editor and content curator. 

I first met Pat online several years ago on the #hcsmca (no longer active) Twitter chat. I was captivated by his insightful and intelligent contribution to this and other weekly healthcare chats.

Since then, I’ve had the delight of meeting Pat in real life, most recently at HIMSS Europe this year, where he was reporting live from the conference.

Despite, in his own words, becoming grey in beard and long in tooth, Pat maintains a keen interest and presence on social media, especially Twitter.

I’d like to start off by asking you to tell us something about the role that social media plays in your work.

PR: I spend a few hours daily on social media, usually Twitter, and have done so for the last several years. In addition to my responsibilities in helping manage the Twitter and LinkedIn accounts and blog for Ontario’s health quality agency – Health Quality Ontario – and acting as social media correspondent for the Journal of Cutaneous Medicine and Surgery (Canada’s dermatology journal) I maintain an active role in live tweeting and blogging from my personal accounts (@pat_health) and Days of Past Futures and in curating health information. I have also served as a social media ambassador for digital health conferences in Europe, Canada and the US. I continue to lecture, when asked, on the professional use of social media by physicians and other health care professionals.

When did you start using social media – what prompted you to get started?

PR: I started using social media about a decade ago to help the Canadian Medical Association (who I worked for at the time) decide how to use the platforms most strategically. It was a natural evolution from my role in managing content on their website. In this role I was able to help the CMA develop the first balanced social media guidelines for Canadian physicians. I was also prompted to become more actively involved in Twitter through my participation with the #hcsmca community and the excellent work of Colleen Young.

You were quite the early adopter Pat. I always think of Twitter when I think of your social media activity. Is this your favorite platform? Are there any others you enjoy using? 

PR: I am all about Twitter. I find this is the platform that fits me best and I hope it remains a viable communications medium until I retire. Through Twitter I have met the most wonderful people from around the world – patients, physicians and many others. However, I still enjoy exploring other social media as well as writing extensively for print. Through my work with Health Quality Ontario I have recently hosted and provided all technical support for a podcast Quality Matters – which has been quite a learning experience.

I first met you on the #hcsmca Twitter chat. Are there any other chats you take part in?

PR:  I am a huge fan of #healthxph, #hcldr, and #Irishmed – which I consider to be the triumvirate of surviving, regular, health oriented tweetchats for health care professionals and patient advocates. I have been lucky enough to meet the hosts of all of these chats personally and strongly admire their commitment and dedication to these volunteer efforts.

I love that you are such a loyal long-term supporter of these chats. The vibrancy and sustainability of this medium is driven by the dedication of the organizers for sure, but also the ongoing support of participants.

You’ve been using social media for a considerable time now – what advice would you give to others who are just starting out with social media?

PR: Start slow. Pick a platform or two that appeals to you and observe before jumping into the conversation. While incredibly useful as information sources and networking platforms, social media continues to become a darker and uglier place, so you need to consider whether it is for you. By picking your platforms and connections carefully, I believe social media still has a lot to offer. And my one big piece of advice to those starting on Twitter: “Never tweet from the pub after 9 pm” (in other words, always have control of all your faculties and think carefully about what you are saying in Twitter)

I think this is great advice Pat even for those of us who are seasoned social media users.  And it’s important that we acknowledge the darker side of social media. Much as it pains me to admit it, there is an uglier side to things online, and we need to protect ourselves as much as we can from malign actors.

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

PR: I have been hugely influenced by the Australian health quality expert Dr. Jeffrey Braithwaite who recently wrote that:  “Healthcare is a complex adaptive system, meaning that the system’s performance and behaviour changes over time and cannot be completely understood by simply knowing about the individual components.” This has huge implications for those who think they can change health care systems by implementing reforms from above as things just aren’t that easy.

You’ve certainly given us something to think about there Pat. In fact, you always give me something to think about when I interact with you.   For those readers who wish to become more informed on global healthcare topics,  I highly recommend you get on over to Twitter and follow Pat @pat_health. I promise you’ll be wiser for it. 

Thanks for taking the time to share these thoughts with us Pat. Wishing you continued success in all that 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. 

Posted in social spotlight

Social Spotlight: Isabel Jordan

Posted on by Editor

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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.

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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.

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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. 

Posted in social spotlight

Social Spotlight: Rod Ritchie

Posted on by Editor

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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.

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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.

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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.