Posted in social spotlight

Social Spotlight: Jo Taylor

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Posted in social spotlight

Social Spotlight: Claire Whitehouse

This week I am delighted to kick off the social spotlight interview series again with Claire Whitehouse, lead nurse for research at The James Paget University Hospitals NHS Foundation Trust and founder of the #WhyWeDoResearch global campaign.


I love the #WhyWeDoResearch campaign. Can you tell us some more about how it started?

CW:  In 2014 I decided to introduce my team to our local population using twitter as our social media platform. I tweeted using our Research and Development handle @JPUHResearch and having explored the use of twitter for a few months prior to this, I had identified that photographs received the most attention, retweets and ‘favourites’. To introduce our team I decided to release one photo, name and job title per day along-with the individual holding a placard upon which they had written the reason why they personally are involved in research. There was born #WhyWeDoResearch. I had intended this would be for the 12 days of Christmas as a Christmas campaign. Within four days Michael Keeling (@keeling_michael ‏) of York Teaching Hospitals NHS Trust had picked up on it and from there it became a National campaign, at which point it was extended throughout the Christmas period. By the new year it had reached Canada and Australia and became known globally. Now, two years later it is in 23 countries globally, with >15,000 separate accounts participating and >250 MILLION impressions on the hashtag. I lead the campaign entirely voluntarily and there are other individuals who support this lead eg Hazel Smith who is based in Dublin. I am also involved in the Health and Research through Social Media (HARTSofthepossible) project which aims to drive health research through and using social media.

I really love how you have created these grass-roots campaigns. How did you first get started using social media professionally?  

CW:  The Executive Team at the JPUH decided to set up a Trust twitter account and asked departments to raise a hand if they wished to host a departmental account. The Head of Research and I felt this would be a sensible step to take (being research and development) so I volunteered to host the account and take the plunge (as I felt it was at the time). I recognised that there might be individuals or groups considered ‘hard to reach’ who were missing out on research opportunities and we all know social media is a growing entity. I’d used facebook in my personal life and joined twitter as a social media platform for my professional life

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

CW:  I focus on twitter as it’s so easy to use and has an extremely large reach. The @wenurses team have a fantastic tool called twitterversity which helps people get started.

That’s fantastic! I can probably guess the answer to this next question, but do tell us more about which topics interest you on Twitter? Do you take part in any particular twitter chats?

CW:  Regular twitter chats are hosted using #whywedoresearch – the topics vary depending on who volunteers or what conversations are happening at the time, this is the beauty of twitter, you can create live chats and people will always be interested. In 2016 we hosted the worlds first research tweetfest in May to coincide with International Clinical Trials Day. We can’t claim entire credit as an idea as it grew (as most things do) from a small idea. I tweeted (from my bed) one Saturday morning 2 weeks before ICTD and asked #whywedoresearch followers if they would like a tweetchat on ICTD. By that afternoon I had 11 individuals offering to host chats and within 48 hours we had set up over 20 chats and coined the phrase #tweetfest. The 2017 tweetfest is over 2 weeks from Monday 15th May and there are 31 chats to choose from.

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

CW: Don’t be scared. Embrace it and go for it.

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

“Words are, in my not-so-humble opinion, our most inexhaustible source of magic” _- Albus Dumbledore

Thanks Claire for taking the time to share with us your experience of using social media in your work. I look forward to seeing your campaigns grow and prosper over the coming months. 


Posted in #HCSM, social spotlight

Social Spotlight: Professor Brian Dolan

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This week it was my great pleasure to catch up with fellow Irish man and global citizen, Brian Dolan.  A director of Health Service 360, Brian has a career that spans more than 30 years working as a nurse and nursing leader with a background in both acute mental health and emergency nursing.

Hi Brian, I am keen to learn more about the role social media plays in your work. Has it led to any exciting projects? 

BD: For some years now I’ve been talking about the last 1,000 days – the time left if you’re an 80-year-old woman whose life expectancy is 83 years or 76-year-old man whose life expectancy is 79 years – and why patient time is the most important currency in healthcare. In July my blog on this topic was published by @FabNHSStuff and curated by the wonderful @PeteGordon68 and @ECISTNetwork. It seems to have taken on a life of its own through twitter, LinkedIn and Facebook and will now the subject of my next book, ‘The Last 1,000 Days’. Thank you social media!

That’s really exciting Brian! So when did you start using social media. What prompted you to get started?

BD: I started using Facebook 7-8 years ago mainly for staying in touch with family and friends, as I work and live in New Zealand and the UK, as well as having extensive travel to Australia. With cousins in California it means I can chat with loved ones up to 19 time zones away!

I think that’s certainly true of many of us – we are led into social media for personal reasons, but then we discover a whole other side to it. Professionally, which platform do you enjoy using the most?

BD:  While Facebook has been wonderful for reconnecting with friends and family from childhood and beyond, I really enjoy Twitter as the single best source of Continuing Professional Development I’ve known in my career. I also love that you can create personal connections with so many eclectic, interesting and generous folk – like yourself Marie! – whom one might not otherwise meet.

I agree! Meeting like-minded people has been one of the most rewarding aspects of social media for me too. Which topics interest you? Do you take part in any particular twitter chats?

BD:  While unsurprisingly nursing is my main interest, quality and service improvement, all things Irish and PhD research are also places I live on twitter. Time zone constraints mean I don’t get to enjoy as many twitter chats as I would like but I like to catch up via their hashtags.

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

BD: Twitter is not just about Kardashians and the waters of healthcare Twitter are warm, kind and generous, so jump right in. Always be your best self on social media and don’t be tempted to feed the trolls!

Great advice! Finally, would you like to share a favourite quote with us?

No matter how educated, talented, rich or cool you believe you are, how you treat people tells everything. Integrity is everything.

Thanks so much Brian for taking the time to share with us your experience of using social media in your work.  It’s been a pleasure to get to know you better through this interview and I look forward to hearing more about your new book when it’s published.


Read: The last 1,000 days: What happens when patient time becomes the most important currency in healthcare #last1000days

Follow Brian on Twitter @BrianwDolan

 

 

Posted in #HCSM, social spotlight

Social Spotlight: Dr Ollie Minton

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This week I am shining my social spotlight on Macmillan consultant, and honorary senior lecturer in palliative medicine at St. George’s University of London, Dr Ollie Minton.

Hi Ollie, I’m eager to learn more about how you are using social media in your work?

OM: As the saying goes no one reads your work except the reviewers and editor so sharing my interests and publications has gone a long way. I also think sharing articles and other things of interest is the best use of social media and by that I mean Twitter. I think some gentle campaigning such as Dying Matters and You Only Die Once (#yodo) pays dividends.

The more you make the connections, the more it pays off

We were able to promote our team at work and the  trust to a huge audience – you can’t buy that publicity – and demystify what we do. The rest is simply serendipity, but the more you make the connections, the more it pays off – I think for instance more of my work has been read since I tweeted links in the last year than ever before. I have enjoyed following and being followed by a wide cross-section of medical types and interest groups.

When did you start using social media. What prompted you to get started?

OM: I started during my PhD in earnest – feeling like a fish out of water – a clinician in the lab and the time any experiment took. I have then seen the proliferation of open data and access and feel that work both old and new can be shared equally. I also wanted to broaden my reading beyond my speciality and medicine to a degree.

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

OM:  Really for me Twitter offers it all and links take me to wherever I need to go. There is some mythical ratio of professional to personal interactions of either 80:20 or 70:30; and for the most part I think I stick to that. The only recent addition I have made is to write a few blogs – prompted by Twitter friends and m’learned colleague and friend Dr Mark Taubert who is also the associate editor of the BMJ Supportive and Palliative Care blog, so there’s a natural outlet and obviously you can then tweet the link to what you’ve written.

Which topics interest you; do you take part in any particular twitter chats?

OM: I’d hope I took the early lesson from the American Society of Clinical Oncology (ASCO) and hide in plain sight, with my interests, both clinical and academic, made explicit. I am interested in supportive and palliative care very broadly, which can encompass all aspects of health. I would focus on cancer care in particular, and long term effects of successful treatment. I take part in the relevant Twitter chats as a result – palliative medicine and radiation oncology journal clubs when the time difference internationally allow, and I do enjoy the debates in the @WeDocs chats both formal and impromptu.

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

OM: Don’t agonise too much – create a profile that allows a personality to come through – photo and bio obviously straight away and jump in.  As I said we docs are very community focused.

The only decent set of “rules” I ever read were by the UK civil service

It’s not rocket science – we must use common sense about everything we publish on digital and social media. Once something has been sent, it’s public. Following these guidelines correctly will ensure that your social media activity will enhance your job as a civil servant, while also retaining the highest levels of integrity.

Or the ASCO – no one is anonymous online and hide in plain sight.

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

OM: I’d cheat and recommend the 42 Douglas Adams quotes to live by from the recent radio 4 revival. But out of all of them, I’d choose:  ” All opinions are not equal. Some are a very great deal more robust, sophisticated and well supported in logic and argument than others. The secular update of In God We Trust all others must bring data” (attributed to W Edwards Deming).

I really enjoyed learning more about your work and philosophy Ollie. I look forward to learning more from you on Twitter.  Thanks! 

Follow Ollie on Twitter @drol007

 

 

Posted in #HCSM, social spotlight

Social Spotlight: Dr Liam Farrell

facebook_f1fb8088feThis week it’s my great pleasure to shine a spotlight on the work of Dr Liam Farrell, an award-winning writer and broadcaster, an irrepressible humourist, and talented musician, and the founder of #IrishMed – Ireland’s first healthcare tweet chat.

Congratulations Liam on the success of #IrishMed.  Can you tell us what led you to start the tweet chat?

LF: I started the #IrishMed tweetchat over two years ago. I’d been taking part in other tweet chats such as #hcldr and #hcsm, and co-hosted a few, for #hpm and #dwdchat. On one of these (won’t say which, there was only one regular responder, which made it a long sixty minutes, so thanks Kathy Kastner for not leaving me high and dry). I’d found them interesting and stimulating, and then reckoned that we needed a similar chat on this side of the world.

I really like how you’ve brought an international audience together for #IrishMed. Was this your original intention?

LF: Initially I’d expected only Irish tweeps would get involved, but it rapidly grew into a global network, with regular participants from North America, Africa + Asia (we go out at 6 am in the morning in the Philippines, so fair dues to my good friends over there). It goes to show that health issues are universal.  Connecting with people and making friends from all across the globe has been a wonderful experience, all generous with their time and their wisdom, all trying to make the world a better place. #IrishMed is also non-hierarchical; all perspectives are valuable, whether specialist, generalist, patient, advocate, carer or general public, and it all helps to in breaking down the artificial barriers between healthcare professional and patients; after all every HCP (health care professional) will be a patient one day. And the dialogue goes both ways; HCPs learn about patient frustrations, patients can more appreciate the difficulties and limitations of medical care.

When did you start using social media? Were you an early adopter of any one particular platform? 

LF: My son Jack was a volunteer in Ohio for President Obama in 2012, and twitter was a great way of staying in touch with the pulse of the campaign. There is always a danger of twitter becoming an echo chamber, so I deliberately followed tweeps from all sides of the political spectrum. I’m a socialist, but like to think I’m ready to accept a persuasive argument from  a different point of view.

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

LF: I use Facebook mainly to keep in touch with my family and friends. Facebook was also handy to archive my columns in one place, and I’ve started a wordpress blog recently, as many of my journal columns are subscriber only and I thought they needed the light of day.  Twitter is my favourite platform, it allows rapid exchange of ideas, and at it’s best the format demands thought. The 180 character limit really forces you to make your responses punchy and concise; excessive verbosity is impossible. 

Which topics do you like to follow on social media? Do you take part in any Twitter chats outside of #IrishMed?

LF: “Doctors are the natural attorneys of the poor,” said Virchow. The contribution of medical care to population health is relatively minor; much more important are the social determinants of health #SDoH, sanitation, food, education, housing. The main cause of ill-health is poverty and doctors that don’t take a political stance are reneging on their responsibilities.

I’m particularly interested in palliative care, as in my rural practice we looked after our own patients, and I was also a postgraduate tutor in palliative care. Two thirds of patients die expected deaths, and there is simply no way the palliative care speciality can look after them all. Palliative care must become a generalist skill; often it’s not complicated, and the precious skills of the specialists should be reserved for difficult cases and for education. On a wider scale, educating the general population about death and dying is also critical; it should be a subject taught in schools.

As I write late at night and in the early hours (“What hath night to do with sleep?” Milton), #hcldr and #hscm are always good timing for me. The topics are wide-ranging and the opinions diverse, and I regularly learn something new and have my prejudices challenged. #HeathXPH is on Saturday afternoon, which unfortunately conflicts with watching horse racing. #hcldr was one of the inspirations for #irishmed; the other was the advice of the irreplaceable Marie Ennis O’Connor.

Twitter is such an accessible medium for rapid exchange of information, it’s very under-utilised at the moment; so many other disciplines could get involved. Myself and my maniacally energetic friend Sharon Thompson (@sharontwriter) recently launched #WritersWise – a tweetchat for writers and aspiring writers

I recognise that SoMe is soft power; words are cheap, and as we screen-writers say, “action reveals character.” but you never know when a message will have an effect, and someone, somewhere will be helped because of it.

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

LF: There is so much information out there, it can initially be bewildering. Follow the platforms that suit you best, and read Marie Ennis O’Connor’s blogs.

You’re too kind;-) Methinks the student has surpassed the master these days.

Finally, would you like to share a favourite quote to send us on our way today?

“I’m too busy to be brief;” Samuel Johnson

(One of my favourite quotes – though I think a tad ironic when it comes to Twitter! Ed)

It’s been terrific to learn more about how and why you use social media Liam and I look forward to seeing what new delights you have in store for your faithful following.  


  • Follow Liam on Twitter @drlfarrell
  • #IrishMed takes place every Wednesday at 10 pm Irish time. To learn more and view past transcripts visit www.symplur.com/healthcare-hashtags/irishmed