Posted in social spotlight

Social Spotlight: Siobhán Freeney


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 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 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

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  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  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 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 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

Posted in social spotlight

Social Spotlight: Sara Liyanage


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, 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 ( 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, 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

Posted in social spotlight

Social Spotlight: Barbara Jacoby

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, 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

Posted in social spotlight

Social Spotlight: Karin Sieger

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 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 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

Posted in social spotlight

Social Spotlight: Nora Cutcliffe

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.

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!

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

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.


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