Category: 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: Nora Cutcliffe (Part 2)

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Welcome to the second part of my interview with BioPharma Consultant, Dr Nora Cutcliffe.

In Part 1, I spoke with Nora about the role social media plays in her work and she shared some super tips on getting the most out of Twitter and LinkedIn. In today’s interview, we pick up our conversation again.

Hi, Nora, I’m excited to learn more about how you use social media in your work. Can you tell us which topics hold your interest online?

NC: On Twitter, I try to stay focused on topics related to pharmacy-based immunization, i.e. within the ‘common ground’ of the 2 circles/fields I described in Part 1 of this interview. For example, if I see a detailed report on the future of pharmacy, I check to see if immunization is mentioned. Or if I come across a new update on immunization practice, I try to confirm if the role of pharmacists is acknowledged. If yes, then I’ll tweet about the topline conclusion(s), but if not, I may ask the organization, “Why not?”, i.e. by Twitter, private email, or other means – perhaps in person at a conference.

Nora, this is such an important step – and not one everybody takes. If, as healthcare communicators, we are to build our credibility and trustworthiness we should always check our sources before we share or re-share them. Tell us more about the next step once you’ve established credibility.

NC: Recently, I’ve been pleased to notice a new trend for continuing education (CME) modules, in that CME immunization topics are include pharmacists on their panel of key opinion leaders (KOLs), alongside physicians and nurses (e.g. via @mdBriefCase). Other CMEs are also being  created specifically by and for pharmacists on vaccine topics (e.g. via @PharmacyU). I like to share these on Twitter too, since many PAI and other immunizers might not otherwise know such cross-functional resources exist.

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For a newly published report or CME, my usual approach is to ask: “Which organization needs this info and/or would be proud to RT this to followers (since it casts them in a positive light)?” Then I re-direct the piece to the association(s) at their Twitter handle(s), i.e. as a pre-packaged gift, if you will. Sometimes I tactfully add additional or more current resources in an attempt to achieve a win-win-win outcome – i.e. for the initial tweeting organization, for the group posting the Retweet (RT), and for myself, as I gain credibility as a specialist who is able to connect the dots. I also like to cross-pollinate by tweeting updates from Canada, US, EU, and AU, i.e. to provide for broader context for international experts with an interest in the field of Pharmacists-As-Immunizers.

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Even within Canada, where each of our 13 jurisdictions has a different scope of pharmacy practice, along with variation in immunization recommendations and/or funding, I find there is significant engagement for tweets that summarize local (provincial/territorial) and national data.

Again another important step Nora. The wonderful thing about Twitter is that it’s a global conversation – it’s important that we acknowledge this in our work. Learning from others and sharing best practice is critical. Do you think organizations are doing enough in this area?

NC: A key observation I’ve made is that several organizations in health care (particularly including public health associations that oversee immunization) appear to handle their social media (SM) activities with very limited budgets and/or staffing. Many such associations may tweet only 1-2 times per week. In these cases, account administrators may be actively looking for relevant content to RT (to help keep their feed alive) and may tend to be more receptive to retweeting general news updates. At the other extreme, some other Twitter accounts may only post their own association materials, according to a pre-scheduled calendar, and might not post RTs of any kind. However, it appears that most accounts will post RTs to supplement their own tweets, and these accounts typically have greater engagement with followers overall.

This is something I’ve seen repeated across many organizations and it’s so interesting that you’ve observed it and stepped into the breach. Have you observed anything else when organizations use social media to disseminate key information?

NC: Another phenomenon related to scarce resources is that some organizations tend to send out email blasts, but do not simultaneously post the same info on their existing Twitter accounts (or ditto for LinkedIn). In these cases, it’s easy for me to repackage the info from an email notice into a tweet which can then be readily sent as an RT from an official/association Twitter account, again gaining visibility for both of us. It’s surprising how many such gaps exist, even just considering my own daily email alerts, so I see this as an excellent opportunity for me to leverage resources by helping such organizations reach a broader audience.

You’ve clearly demonstrated your social media savvy and one of the things that strike me most forcibly about you is how you are so thorough in your approach to social media. For someone who is newly starting out on this path, what advice would you offer to them?

NC: Thanks Marie!I think the most valuable learning approach is to identify a few SM ‘gurus’ in your specific area and follow them as gold standards for your own practice. By paying close attention to the nature of individual posts and replies, there is so much to absorb and apply.

For me, several leaders and/or organizations jump to mind when I think of who is rocking SM, at least on Twitter, both in Canada and abroad (and considering 3 different content streams):

That’s a great mix – tell us some more about why you chose these leaders.

NC: It’s readily apparent that these top influencers have several skills and approaches in common; they demonstrate knowledge, resourcefulness, and enthusiasm, while also expressing gratitude, courtesy and a personal touch in their individual replies – all of which encourage engagement and greater sharing among followers. So I believe these are essential elements of a winning formula for SM leaders.

Absolutely! Any other suggestions for social media newbies?

NC: Apart from following experts, I would also suggest attending a live workshop in your local area on at least one SM platform of interest. For me, it was very reassuring to learn during (or after) the main presentations that others had similar questions to get off the ground, or that even those with significant experience had more advanced questions that allowed me to take a test-drive on the road ahead.

That’s a super point Nora. I know from my own experience way back when I started I was afraid to ask many questions for fear of appearing stupid. I thought everyone who was using social media had it sussed. It’s easy to forget that we all had to start from scratch at some stage.  Any other tips to share?

NC: To look at a few simple mechanical tips (for Twitter), I would suggest the following:

  • Aim to include a graphic or video with as many tweets as possible.
    • A super-easy way to begin is with an image from a Google search (or other source of free stock photos, as recommended by @JBBC), and then copy this image into Powerpoint by creating a single slide in ppt format. Then, convert/save this to jpeg format to post on Twitter. This allows you to add eye-catching borders, which you can customize to create a signature look for your brand. Even better, Powerpoint allows you to insert additional text (in a text box), so you can extend your message well beyond 280 characters. A font size of at least 24 (in ppt) seems to work well for the final tweeted image, e.g. as viewed on a mobile phone.
  • In cases where you would normally send out a quick RT, consider the option to “RT with comment”, which allows you to add your opinion, set the tweet into context for your specific audience, and/or send it directly to another follower (so they receive a notification) by inserting their Twitter handle.
    • In your own comment, avoid repeating the same headline or text from the original tweet, but insert new wording to add relevant detail. In this way, you can provide further ‘bait’ for followers to open and read the original tweet, and to understand your take on the story.
    • If urls are included in the original tweet, I like to open the link(s) to read the full story, and potentially get a quote. Where possible, I try to directly acknowledge the relevant expert (or author and/or publisher) by looking up their Twitter handles (using the Twitter search function), so I would end up with some of the following pieces in the comment for the RT: “text text text @expert @author @publisher @organization #hashtag #hashtag”. This allows these folks to see that you are promoting your work, so they are much more likely to engage with your subsequent content in terms of follows/likes/RTs.
  • To save characters in your tweet (i.e. to claim more ‘real estate’ for critical text/hashtags/handles), be sure to use https://bitly.com/ or some other URL shortener to condense URL links.

This has been a fascinating interview – I’ve even learned a thing or two from you! So I like to finish these interviews by asking folks to share a favourite quote. Do you have one you’d like to share with us?

NC: In my case, I’ve made very gradual progress with SM over the past few years, with lots of upside potential still ahead. So the following quotes really resonate with me, particularly since trial-and-error can be the best teacher, and since the goal of ‘conquering’ SM continues to be a moving target. Also, it’s fascinating that while these quotes were penned long ago, they are still remarkably applicable in our modern-day digital world!

The secret of getting ahead is getting started. (Samuel Clemens, better known as Mark Twain, born 1835)

You don’t have to have it all figured out to move forward. Just take your next step. (Unknown)

The expert in anything was once a beginner. (Helen Hayes, Actress, born 1900)

And for final inspiration, if I may, here’s one last quote that popped up on Twitter as I’ve been wrapping up my thoughts – must have been Karma!

If you never stop LEARNING you’ll never stop EARNING. (tweeted by @jerryacuff Jan. 19, 2019.

That’s a perfect quote to end our interview on – in social media we never stop learning and that’s what I find most rewarding about working in this space. Thanks so much Nora for sharing your insight with us – this has been a super interview.

You can follow Nora on Twitter @NoraCutcliffe and connect with her on LinkedIn.

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: Nora Cutcliffe

Posted on by Editor

This week’s interview shines a spotlight on the work of BioPharma Consultant, Dr Nora Cutcliffe.

One of the many things that delight me about this series of interviews is when interviewees come back and tell me they enjoyed the exercise of reflecting on why they use social media.  Nora is one of those for whom this process was a chance to reflect and she came back to me with so many rich insights, that for the first time, I’m splitting an interview into two parts.

After working for a decade with a biotech company (Hemosol Inc.) in Toronto, Canada, Nora has been freelancing as a consultant in the field of Biologics for over 15 years. In this first part, I ask Nora about the role social media plays in her work and she shares some tips on getting the most out of Twitter and LinkedIn.

 

Hi, Nora, I’m excited to have you share your social media story with us today. I know you have many thoughts, so let’s get started right away.

NC: First, I want to say right out of the starting blocks that you, Marie, have been such a powerhouse of knowledge, skill and generosity of spirit in sharing your social media talents – and I’m indebted to you for these gifts! You’re an inspiration to all those in the health care social media (#HCSM) space, and I feel honoured that you’ve invited me to do this interview.

Oh, I’m blushing now. And it’s also true that you have been very generous in sharing information with me, for which I too am most grateful. Can you tell us something about the role that social media plays in your work?

For the past 10 years, I’ve focused exclusively on vaccines and immunization, primarily as a medical writer. I use social media to keep up-to-date as a subject matter expert, and also to share resources with immunization experts, pharmacists and other health care providers, as well as health-related organizations.

To walk you through to the core of my current interests and future direction, if you can picture two overlapping circles (as for a Venn diagram), then the first circle would be pharmacy practice – this field is rapidly expanding its scope in the areas of immunization, smoking cessation, management of hypertension and treating minor ailments, while facing challenges in deprescribing and overuse of opioids, to name a few relatively new specialties.

The second circle would be the field of immunization, which involves vaccine access and delivery by multi-disciplinary health care providers (HCP), all of whom can help increase vaccine coverage. The intersection of these two circles would then include trained pharmacists who offer immunization services (i.e. “Pharmacists-as-Immunizers”, PAI), or alternatively, it could be described as the subset of vaccine delivery that is handled through pharmacies.

That’s really interesting. This is the first time I’ve come across the role of “Pharmacists-as-Immunizers”, can you expand on this for us?

NC: While the concept of Pharmacy-Based Immunization Services is a newly burgeoning field in academia in its own right, I see this area as a current gap in the literature and likewise on social media. Researchers tend to publish in one camp (circle) or the other, often without setting the data in the context of the broader landscape.

Also, it appears that some vaccinators (e.g. MDs, RNs, public health providers, and pharmacists) are still relatively “in the dark” regarding each other’s contribution and/or challenges, and some providers may not function with the mindset that they’re all part of the same team.

So I strongly agree with a key message put forward by @DrVivienBrown, who states that “Immunization is a team sport” – and she also emphasizes that participation is required by both immunizers and patients, as advocates for themselves. While Dr. Brown has focused on Canada, these are common themes on health agendas in other developed countries.

Given this situation, my topline goal for using social media is to help health care professionals and policy-makers become more aware of the research and evidence to demonstrate that PAI are already “moving the dial” towards greater vaccination coverage, particularly for adults.

It sounds to me as if you are a pioneering voice in taking this discussion online. What kind of things are you posting to spread this key message?

NC: In addition to sharing reports describing the progress being made by PAI (in targeting other HC professionals), I also post resources targeting PAI themselves, to help them keep abreast of changes in vaccine market access, etc. For example, I like to share updates on new vaccines being approved and/or publicly funded for specific age cohorts across Canada’s provinces and territories (such as new flu vaccines tailored specifically for adults over 65 years; the new recombinant shingles vaccine; and the 13-valent pneumococcal vaccine).

Whether these new vaccines are publicly funded, or available only on the private market, they are being requested more frequently at the pharmacy by the general public. Since pharmacists are positioned as highly accessible HCPs who can educate patients with up-to-date information, they need to stay nimble and constantly update their reference tools. So that’s what I hope to contribute – and to support PAI consultations with patients that lead to informed decision-making on immunization.

This year I’m excited to be working on several manuscripts with a team from the University of  Waterloo School of Pharmacy – a group that also has a strong digital footprint on several platforms (e.g. Pharmacy 5in5; @UWPharmacy; and @open_pharmacy). Together with a small group of pharmacists across Canada, we’re planning to produce a series of approximately 8 papers on the topic of PAI, to be published in a special issue of the Canadian Pharmacists Journal (CPJ) in 2019.

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A selection of Nora’s recent publications in Immunization

So this is a fascinating project for me, in which my client work will align almost perfectly with my interests on SM/Twitter, and some of my new Twitter contacts will become my working team. In this case, since the CPJ journal is in the public domain, we’ll be able to share the final deliverable(s) widely on Twitter, LinkedIn, and potentially other channels.

I love this! It reminds me of a quote from Frederick Buechner – “Your vocation in life is where your greatest joy meets the world’s greatest need.”

So now, take us back to when you first started using social media – what prompted you to get started?

NC: I’ve been using LinkedIn for more than 10 years in tandem with growing my consulting business, and I started dabbling with Twitter and Instagram more recently, in 2016. I was initially motivated to use Instagram and Twitter @NoraCutcliffe as part of my volunteer role as Co-Captain of Advertising for the massive annual Flea Market at Kingsway-Lambton United Church, which has generated over a million dollars in proceeds for charity since its inception several decades ago.

I then realized I could easily transfer my social media skills & tools to my ‘day job’ as a medical writer, both to facilitate access to the latest research and news items, and to increase my visibility across my target client base through my own posts. In general, I also wanted to become more digitally literate, and take the opportunity to apply my career experience in immunization in new ways that could continue to grow/expand into the foreseeable future.

A great turning point came for me when I attended a terrific breakfast session in mid-2016, hosted by the Ontario Pharmaceutical Marketing Association (OPMA), entitled “Harnessing the Power of Social Media Marketing in Pharma”. One of the workshop panelists was Yaz Maziar, Senior Director, Marketing & Communications, Prostate Cancer Canada, who is a fabulous role model for wildy successful Twitter awareness campaigns – and from whom I continue to learn as I’ve followed him @ProstateCancerC ever since.

Among other lessons learned that day, I had two key takeaways from that workshop on HCSM. First, as a sector, health care lags behind other sectors, in terms of social media utilization and savvy, so there is enormous potential for future progress. And second, on a more practical “how to” level, I learned that one of the best ways to build a base of followers, say on Twitter, is to simply dive in and consistently post accurate content, building your reputation as a reliable source of timely, useful information. In those early days, Marie, I must reiterate what a tremendous font of knowledge and guidance you were for me – in leading by example, and demonstrating how to become a more competent Twitter user!

Blushing again 🙂 As you know I’m a Twitter evangelist and I love to see how people use it for good. How does Twitter fit into your marketing mix?

NC: My main marketing strategy is to attend conferences to keep acquainted with old contacts and constantly develop new relationships. I feel I’m in a very fortunate position to have more potential work than I can reasonably handle, so I can select projects while declining others. So at this point, I don’t devote any budget to SM activities. However, this may change, with many things on my list to learn, including better use of Twitter (or other) analytics, Twitter lists and surveys, to name a few.

I would also love to test the waters with using Twitter for ‘crowd sourcing’ of data or opinions, as you did, Marie, when you created your article on “How to Read and Understand a Scientific Paper”. I was totally intrigued to see how efficiently you requested input across your Twitter base, compiled replies (including my own), and published this piece!

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Nora & colleagues at Holiday Reception @BioSciencePEI (PEI BioAlliance, promoting the growth of the BioTechnology sector in Prince Edward Island, Canada)

While Twitter is the mainstay for most of my posts, I routinely check LinkedIn for content posted by my connections. I rarely use Instagram, except in my volunteer role with the church Flea Market as mentioned above. Since joining Twitter, I’ve also created several “Twitter Moments” to capture conference or other event highlights. In addition, I really enjoyed using the Storify platform and its ability to consolidate posts across various SM platforms (e.g. from Facebook, Twitter, and Instagram) all into one ‘Story’. So after learning how to use Storify based on your online tools posted @JBBC, I was really disappointed to see this platform was discontinued in 2018.

I really like that aspect of using Twitter to curate conference highlights and I too miss Storify greatly. Twitter Moments, while not as good, is still an effective curation tool.  Can you tell us some more about your audience on Twitter?

NC: Currently, I have a very modest number of Twitter followers, but in keeping with my client work, many of my followers are organizations, on both the pharmacy side (including provincial and national pharmacy associations) and pertaining to immunization (including national/provincial public health, research and advocacy groups). The upside of this situation is that a single RT of one of my posts by one of these organizations can have a great reach, across their large membership base(s). Occasionally, even with just 4 or 5 RTs, one of my tweets may reach 20-50K followers, which is quite gratifying for me. In general however, my goal is to increase impact, rather than absolute number of followers.

You’ve hit the nail on the Twitter head here Nora. One of the most powerful things about Twitter is this network effect – the exponential reach of a single tweet. How about health-related Twitter chats? Do you take part in any?

NC: Overall, I consider myself a neophyte on SM. To date, I haven’t contributed to Twitter chats per se, but I have participated in several Twitter campaigns to support advocacy months/weeks/days on both pharmacy and immunization topics.

What I like most about Twitter is that it keeps me up to date, as the single best and most timely source of information in my areas of interest. A second big attraction for me is that tweeting is the antithesis of creating lengthy, confidential reports that I typically develop for consulting assignments. On Twitter, I can quickly share URL links to many resources (including some of those I use in compiling client deliverables), and voilà – instant gratification!

It’s a fun challenge for me to keep within the allotted 280 characters, and a very different reward system in my brain compared to sending out to a client my bread-and-butter “long form content”, a new buzzword I learned recently from you Marie, @JBBC!

Thirdly, wearing my consulting hat as a knowledge broker, it’s important for me to keep an excellent paper trail to retrieve key data that I want to reference later on. Recently, I realised that when I post an update as a Tweet, I’m more likely to remember the data and source – or in other words, “I tweet, therefore I remember”. This may be because I’ve taken a few brief moments to process the info, and repackage it for others. So to some extent, my Twitter feed doubles as a progressive reference library for my own use as well.

Now that’s a super idea. I tend to do the same thing through favoriting tweets. I know you’re also active on LinkedIn. Tell us some more about how that works for you.

NC: I haven’t yet posted any content re pharmacy-based immunization on LinkedIn since my network is much broader (500+ lifetime career contacts) and not many of these folks would be interested in this specific niche area. However, I love that LinkedIn allows me to automatically stay connected with colleagues who move to new positions (which happens constantly in health care), and it’s the perfect opportunity to send “Congratulations” and stay in touch.

Also, since my work involves a lot of teleconferences (TCs) with groups of up to 10 people, another benefit of LinkedIn is that I can look up new contacts prior to ‘meeting’ them by phone, even if we are not yet “linked”. I like to check out research interests and see if I have any contacts in common with new colleagues. If I mention specific publications or contacts during a first TC, this creates an instant connection, and I find that to be very powerful.

Even seeing a LinkedIn profile with photo – to get a sense of character and personal style – is helpful in identifying new voices and understanding team dynamics during a fast-paced phone call. This can be especially important when I need to hastily distill action points for myself and/or other TC participants before winding up the call. Then, immediately following a TC, I send invitations to connect on LinkedIn, while the discussion is still fresh in everyone’s mind.

Another note on LinkedIn is that after using this platform for several years, I attended a very inspiring workshop in 2017, as led by Ross McPherson, targeting Oxford alumni living in the Toronto area. One excellent piece of advice Ross gave us, among many other tips, was to ensure that you review the format of your LinkedIn profile on your cell phone before finalizing new edits. He underscored the fact that your ‘Headline’ (the blurb that appears immediately under your name) has capacity for 100-odd characters, and this should be used optimally to market yourself. Note that your ‘Headline’ is different from the longer ‘Summary’, which is truncated on the cell phone display. To be blunt, some browsers may never read beyond a brief Headline, so be sure to nail this one upfront!

I also want to mention Jade Pluck as a terrific expert on using the LinkedIn platform. In early 2017, Jade graciously and efficiently guided me (via online messages) through what I needed to know to maneuver through the new user interface that was being rolled out that time. I would highly recommend her training videos and/or services for those looking to improve proficiency on LinkedIn.

Nora, this has been a fascinating discussion – but we’re not done yet. Join me next time for Part 2 of this interview.

Until then, you can follow Nora on Twitter @NoraCutcliffe and connect with her on LinkedIn.

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: Chris Lewis

Posted on by Editor

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. 

Posted in social spotlight

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.