When a restaurant ignores your gluten allergy

I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases.  I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.

Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception.   Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad.  Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism.   I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened.  It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.

One of those changes was removing gluten from my diet.  I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten.  Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible.  It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy.  Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food.  In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.

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This was clearly an mistake.  The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi.  I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu.  I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that).  The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).

 

What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well.  Must have been something I drank I mulled.  I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce.  When I asked about this the waitress informed me that the mango sauce had gluten in it!  As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough!  How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?!  This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.

Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”.  It is not something I choose not to eat.  Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not.  I would love to eat bread or pasta or random sauces like a “normal” person.  But I can’t.  And a restaurant should take my, and other’s, food allergies very seriously.  I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking.  Great.

Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough.  Firstly there is the fatigue.  Autoimmune fatigue is hard to explain unless you have actually experienced it.  It is more than tired.  I ache.  I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one.  I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days.  Trust me I haven’t!  Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion.  In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated.  But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive.  Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.

That unfortunately is not the end of it.  The other major symptom is brain fog.  Just as autoimmune fatigue is hard to understand and describe so too is brain fog.  Again I will liken it to a hangover – when you just cannot think straight – but far worse.  I have next to no memory right now and have to write everything down on post-its.  I struggle to clearly remember the bulk of some of my meetings – only the gist.  I am struggling with people’s names (although I have never been good with names).

Brain fog however is more than just memory – it is also means I cannot think as clearly.  For a split second today for example I could not remember how to look at the next week on my calendar.  Basic and yet for a split second I drew a blank.  I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self.  She said that she would never have guessed the difficulty I was having intellectually.   I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience?  How would they cope?

This then brings me to my final point.  Many of us autoimmune patients look fine, normal, healthy.  You may never guess the battle we are going through or just how incredibly ill we feel.  We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to.   Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel.  I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.

We do not want your pity though – but we do want you to try to understand.  And we also want you to respect our health and our allergies and not be cavalier about it.  If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open.  I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later.  Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.

I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored.  Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms.  Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out.  Let’s hope!

 

PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi.  And it was 100% gluten free.

 

 

 

 

 

 

 

 

 

 

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#SXSW17 countdown

This time next week I will be in Austin Texas enjoying day 2 of SXSW.   If previous years are anything to go by I will be having an amazing time, but may be sporting a mild hangover. My first year at SXSW was a real life changing experience but sadly my second year, last year, was far less outstanding.  I still enjoyed last year but it lacked the “wow” of my first time.  I suppose though this is to be expected as with all things in life!

This year I am hoping to land somewhere in between.  Of course I am not expecting that same “wow” that I experienced the first time – the element of the unknown and surprise is gone – but I am hoping that this year I will be a bit more prepared than last year.  I have also been looking at the programme and I am already more inspired than I was last year.  I had struggled at SXSW16 to find things that really got me excited, with a few exceptions, but this year’s programme looks like there will be plenty to get me stimulated (besides all the parties and free booze of course!).

I am also really chuffed as this year I have an old friend my MBA attending along with a couple of my London friends so I have high hopes on the social side if nothing else.

This year I also have a clear objective – to gather as many freebies as possible!  In April I will be heading back out to Africa to join my boyfriend for the Namibia leg of his trip and I plan on restocking him with pens and other stuff that he can give away to kids as he travels through the continent.  It really struck me in Morocco that all the children just wanted pens – that was the first thing they asked for – followed by “bon bons” (sweets) and interestingly enough then following by “cahiers” (notebook).  SXSW will provide me with the opportunity to gather up freebies and put them to good use.  Rather than those free pens just lying around at the bottom of my handbag they will hopefully be used by some child in Africa in school.  Of course I will be on the look out for more than just pens – I will gladly swipe sunglasses, toys, etc.  Perhaps not the most digitally orientated objective but I a good objective nonetheless in my mind.

So if you are going to be at SXSW17 and want to ply me with free goodies just get in touch!

 

 

 

The Sahara

20170226_081954-lThis weekend I had the pleasure of doing a long weekend in Morocco with my boyfriend.  He is driving down from Zurich to Cape Town and back in his Landrover and I flew over to join him for this part of his trip.  It was truly spectacular from the picturesque Riads in Marrakesh, through the snow capped Atlas mountains, to the sand dunes of the Sahara and the vast expanse of stony dessert and nothingness on its edge.  Being in a Landrover meant we could get to places not many tourists get to visit and we also were able to camp out in the dessert, whilst being totally self-sufficient (his car is even equipped with a travel shower, solar panels and a proper fridge).  I am truly fortunate that I was able to have an amazing experience like this and I had the most fantastic time … despite being offline for most of the time.

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In this day and age to be somewhere were you truly have no internet connection, no wifi, no roaming, is remarkable.  It felt as if time had stopped and there was only the here and now – with all its beauty.  Of course I really wanted to share the wonder of my trip but at the same time I had no desire to connect to the outside world – to find out what new craziness was happening in the USA or what new issue was hitting the NHS. It really made the trip that much more magical being so cut off and it is an experience that I would not have valued perhaps quite as highly until I had gone through it.  I always joke that I couldn’t live without Facebook but I survived 5 days without it!

The only time I went online was briefly to email my parents.  They were naturally worried about their daughter going off road with some chap (they have not met my young beau yet) in a North African country and I wanted to let them know that all was good.  I therefore switched on roaming as we stopped in one of the towns and sent them an email.  This however is in itself remarkable because, just as I was connecting from the middle of nowhere in Morocco, they were picking up my email in the middle of the ocean somewhere off the coast of Hong Kong (they are on a cruise).  It was comforting to know that I could let them know all was good – and I am sure it was comforting for them to hear that all was good my end too.  Even in the remoteness technology enables us to connect with those that mean the most to us.

Of course I do have to admit that the first thing I did once I had been dropped off at the airport was connect to the Wifi and check the Beeb and Facebook (and send my parents another email this time with some photos).  I discovered that actually the world had not ended while I was away and that I really had not missed much on Facebook.  Oh what a surprise!  What had happened though was that Whatsapp had changed – when I went to post a status update (something mooshy along the lines of being in love … ahhhh) I discovered that I could no longer do this the normal way but now there was a status tab but it only allows for photo updates not text.  Change is not always good in my opinion!

Now that I am back home of course I am also incredibly grateful for technology.  I will not be seeing my boyfriend for another month or so, when I will go join him in Namibia for a few weeks.  Naturally I miss him like crazy but we can stay connected through Whatsapp and “old fashioned” text messages.   He is also using a  very cool tech device that posts his co-ordinates so I can also always see where he is and I am also comforted in knowing that the same device has an SOS function which will ensure help is sent to him wherever he is if he needs it.  So whilst he is literally miles and miles away technology will ensure that we can stay close and connected and that is truly magical.

Pharma social media – what’s changed

Today there was another #hcsmeu tweetchat on the topic of what has changed over the last 10 years, and what will be different in 10 years time.  I was really excited to be able to participate in the chat, especially as #hcsmeu tweetchats are what really got me into Twitter and introduced me to a fantastic group of like minded people, many of whom I have become good friends with.

I think we have seen a great deal of change over the last 10 years.  Today most pharma companies are on social media, whereas 10 years ago it was still seen as this big scary monster by many of them.  Now as to whether they are doing social well that is another question.  I think what we have seen is more join, and more engagement, but I think also that some of the pioneers have stalled, and I would say many are just joining a status quo rather than trying to push and pioneer new ways of engagement to benefit patients and other stakeholders.  I should not grumble as 10 years ago I dreamt that so many would be active!

However what I would like to see now is more involvement by and for relevant stakeholders.  Social media in pharma is still the stronghold of Corporate PR.  I question though that given how mainstream social media has become,  but also the value it brings to stakeholder engagement, should we not be seeing more medics and patient advocates (working for pharma companies) involved and active?  Surely patients want to hear from other patients, and medics want to engage with other medics?

Also talking of engagement, there are still far too many pharma companies which do not really engage, but just use social as a push or PR channel.  Novartis’s Facebook is a case in point – they have not enabled commenting to their wall, presumably because they do not want that two way engagement with stakeholders in this channel.  Is that wise though in this day and age?  What does that say about a company that still does not want to engage with stakeholders via social media?

The other big change over the last 10 years has also been the change in technology.  Today most of us access our social channels via mobile phone – and we really are able to engage from wherever we are at whatever time we want.  We are no longer shackled to our laptop or PCs.  This is particularly useful around congress, and is why we now see more “participation” at congress happening online that at the actual physical event, whilst at the same that participation is being driven by people at the event on their mobiles.  Patients now also have access 24/7 from wherever they are to social media support – this could also potentially be truly life saving for some.

So what will change in 10 years time?  Technology of course!  I think we will see greater use of AI (thanks @Lenstarnes for flagging this one) for starters.  I think we will also see a far greater blending across technology, for example the blend of VR with social media (and not just for gaming).  I think we will start to see VR social media patient communities – bringing people together in a new virtual world, whether for support or education.

I think, and hope, the way organisations are structured to deal with social media will change.  I would love to see patient advocacy teams grow within pharma and see them being much more involved in driving social media (not just participating) as well as social media engagement becoming part of medical’s daily job.

Finally I hope that in 10 years time we are still having great #hcsmeu tweet chats and that that awesome community of people are still there, engaging and chatting.  Perhaps though with some new blood to drive new discussions.  Will those chats still be happening on Twitter?  Who knows but I look forward to being part of the discussion wherever it is!

 

The importance of cat videos

As I sit here checking out my Facebook page and the BBC news it is hard to get away from the whole Donald Trump thing and the doom and gloom that surrounds his inauguration.  As a staunch supporter of the environment I find myself terrified at the implications of a climate change denier running one of the world’s largest polluters, especially as he has filled his cabinet with fossil fuel executives and fellow deniers.

As more and more countries join the battle to try to stop climate change, including China and India, both traditionally countries with very bad records in terms of environmental damage and pollution, it felt like there was some hope and we might be able to turn the tide of environmental destruction and climate change.  Much of Trump’s rhetoric has felt very protectionist and isolationist, suggesting an America that can just go it alone without any concern for the rest of the world.  Whilst this may be fine for some things, when it comes to the environment and climate we are all interconnected and each country impacts the rest of the world.  What Trump does in his Ivory Tower (or indeed any other world leader) has an impact on the death of our oceans and our global biodiversity.

So … this is all frightening and depressing.  There also seems to be no way of getting away from all this doom and gloom as everywhere we look the world is talking about Trump.  But wait … there is hope!  There are people out there battling against the doom and gloom and offering a glimmer of a smile.  There are people still sharing funny cat and dog videos!  As I watch these I am able to take my mind off the potential disaster that looms.  I also find that I do not have to log off the internet and become a digital hermit for the next days to years – there is more out there! In fact here are a couple of my favourite funny cat and dog videos to help in this fight against the doom and gloom:

 

 

Laughter aside the above does raise a really important point – how pervasive the internet has become and how global it has made us all.  Whilst US presidential elections or large national disasters have always made the headlines, in the past we could just ignore or walk away by not watching TV or reading newspapers.  The internet has now made that just that bit harder and it has also turned very national news stories into global stories.  Whilst we are all watching the US presidential inauguration there are other national stories that are making global news, such as the Italian earthquake or the IS destruction of Palmyra.  The internet has made our world that bit smaller and has made us aware of the impact of some national news has on the world as a whole.  Frankly it can be overwhelming and depressing.  All the more important therefore that we also share the happy and funny stories.  Laughter is critical for our health and we need to balance the bad news with the good, the sad with the happy, and make sure that our internet activity also offers this balance.  So go ahead and share that funny video!  Bring some balance back into our internet viewing and make sure we continue to smile despite all the world’s woes.  But remember … animals can be jerks too!

 

Final words from hell

This week, like thousands other around the world, I have been deeply moved by all the final messages that have been coming out of Aleppo thanks to Twitter.  It really has moved me to tears reading these tweets that have been sent from what must surely feel like hell.  It is heartbreaking to read these tweets that these desperate men, women and children are sending, detailing the horrors of Aleppo and in many cases saying their final farewells.  Through social media we are able to hear their messages, we are able to follow and stay informed about life in this war zone from the civilians trapped inside.

aleppo

On the one hand this is truly remarkable – especially given the besieged state of the city and the lack of western journalists in the city.  Through social media we are able to hear first hand about what is happening – not through the words of professional journalists but by normal civilians trapped in the city.  Local self-taught journalists have also been sending out reports, including drone footage of the devastation on the ground.  Social media truly is placing the power of reporting news into the hands of ordinary people.

However there are also downsides.  How totally demoralising and distressing it must to know that people are reading your tweets, your desperate pleas for help, and to know that you are able to tell people about the hell you are experiencing but to receive no help.  To feel so powerless that you resort to sending final farewells out to a big wide world that does not seem to care – that appears to only read but not act.

Similarly as one of those people reading these tweets it is also distressing.  I can only read the tweets but I am totally powerless to do much.  I can sign petitions or contact my MP and demand action but I know that for many of those tweeting from Aleppo any help will come to late.  I also realise that mass global outrage, as seen also through social media, appears to do very little and has not resulted in governments stepping in to stop this slaughter.

I only hope that those sending those tweets find some comfort in knowing that we out here in the world know of their suffering and that we hear their plight, even if we are powerless to do anything.  I also really pray that those who send those final goodbyes will live to share their stories from safety and will be able to share their stories on social media post war, as they rebuild a country totally ripped apart by a brutal, senseless and disgraceful war.

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Finally, being the animal lover that I am I also have to offer a prayer for the “cat man of Aleppo” and all the stray cats he cares for.  Again thanks to social media we have been able to follow the amazing work this ambulance driver has been doing.  With so much human suffering going on we often forget the animals that are also caught in this hell.  They have no voice and no way of sharing their anguish and terror with the wider world.  One very brave man though is there to be their voice and to care for them.  When many fled he stayed to care for all the abandoned and stray cats showing the most incredible bravery.  The pictures that he shares over Twitter also break my heart but there are also some heart-warming ones such as the little girl playing with a kitten that she adopted from him.  What will happen to Alaa and his cats?  I have no idea but I will continue to follow him on Twitter and hope that their story has a happy ending at the end of all this horror.

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Social media & breaking down health stigma

This week I saw a really powerful video called “I had a black dog, his name was depression” which was developed by the WHO to talk about depression.  Despite this video being a bit “long” at just over 4 minutes I watched it through to the very end.  As someone who has had my own issues with the black dog over the years the video really resonated with me.

I have certainly had to make compromises in my life as a result of depression.  Whilst people at work have never really seen the impact of my depression, my friends have.  This is because when you suffer from depression you work really hard to hide it and to carry on and invariable you have to prioritise your energy.  For me work has always won that prioritisation but that means that at the end of the day I had no energy left to meet with friends.  In hindsight this may have exacerbated things as I had no one to talk to and just fought my battle on my own.

Today however things are different.  Firstly I found out that my depression was actually a symptom not a stand-alone disease (it was in fact a result of my Hashimoto’s, for which I am now getting treatment).    Secondly I decided that as someone who works in the healthcare industry I have a duty to stand up and be a voice for patients, to help break down the social stigma and the silence that goes with this, and many other diseases.  I stopped making excuses to my friends (I’m busy, I have a cold, etc.) but become open and if I could not go out because of depression I told them. I was amazed at just how many of my friends then also came out and told me they too had had their own battles with depression.  We started talking and it often really helped.

The other big change though that I have seen since my first bout of depression in my early twenties is the impact of social media.  When I once posted on Facebook about it I had friends PM me to tell me how brave I was but also how it helped them to hear that they were not the only one having these battles.  I did not think I was brave – I think I was just being passionate about the my obligations as a patient who works in the healthcare industry.

Social media also provides people with a forum where they can talk to others, anomalously if they want, and get support when they need it.  I myself have written in the past about my involvement in talking a Facebook friend down from suicide via a Facebook group.  The lady in particular had set up a closed group called “Goodbye” where she shared that she had had enough and had decided to end it.  Members of the group included people from the US, Europe and Australia, so we really were able to provide her with 24 hour support.  We were there for her and provided her with the friends and support she did not have offline, without which I am sure she would no longer be here today.  Social media really did save a life.

The other benefit that I believe social media is bringing is to help break down the stigma and enabling people to talk openly, and show their support.  By moving depression out of the dark and into the public domain it can help patients, and give them the confidence to talk to people and seek help.  Knowing you are not alone can in itself be incredibly impactful.

Finally another thing to remember about depression is that it is not just a developed world problem.  Not surprisingly depression is a huge issue in war torn countries or where people do not have a balanced diet (as is the case in areas of extreme poverty). In these countries however the stigma is still very big around depression and talking about health problems, and here having access to an online resource where you can be anonymous can really have a huge impact.  Slowly as more people in these countries get access to the internet we may hopefully start to see technology starting to help improve the lives of patients in these countries.

We still have a long way to go to break down the stigma surrounding  depression and mental health but social media is helping.  The positive results should be seen not only in terms of patients quality of life but also economically as people get the support they need to be able to function and be productive at work.  I personally never took a sick day because of my depression but I know many people who have.  Reducing those sick days would be another great ROI for social media!

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#Tinder … is it social?

This week I was giving a lesson on the basics of social media and I noticed that Tinder was included in Fred Cavazza’s awesome social media inforgraphic.  I have to admit that this surprised me – I’ve been using Tinder for years but I never thought of it as a social platform.  For me Tinder fits into the online dating category, not social media.

However this image made me think – what is social media but platforms were people can engage and interact … just like online dating.  The more I pondered this the more I began to see the sense of Tinder appearing on this image, especially with the new functionalities that Tinder has brought in recently.

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With this new thinking I logged back into Tinder, and with my partner in crime and a few glasses of bubbly, we decided to test out the new Tinder Social.  This functionality is Tinder’s attempt to take the dating app into the more “social” realm. It allows people to form groups with friends of theirs who are also on Tinder and then swipe other groups to chat with and potentially meet up with.  You can only engage with these groups if you yourself are in a group – so a single profile can’t engage up with a group profile. There’s been quite a few comments about what this functionality is really for, especially given what many single people use Tinder for, and I have to admit that I was therefore not overly surprised to see a few male female groups, where it was clearly a couple looking for fun.

Anyway so there is me and my partner in crime, let’s call her Miss.B., playing with Tinder social.  It was Miss B. that set up our little group and this is where I stumbled upon my first issue with Tinder social – she could add me to a group without my permission or even notifying me.  I find this quite concerning – any of my friends on Tinder could use my profile and there is nothing I can do about it.  I pondered how I could use one of my friends in Australia’s profiles to form my own group – knowing she would be fast asleep I could in theory have fun with groups without having to worry about her quitting my group (well not until the early hours when she woke up).  I could image her waking up perplexed to find her Tinder inbox full of these group chats – how angry do you think she would be?  I know I would be pretty peeved! Mark one against Tinder.

I then came across our next stumbling block with Tinder’s attempt to get more social … control.  While Miss B. was happily swipping away on other groups I discovered that as she set up the group (on her iPhone) she had all the control – I was unable to swipe groups on my side (with my Android phone).  This meant she could connect with whoever she wanted, using my profile, but I had no say in the matter, and again the result was a stream of discussions in my Tinder inbox that I may not have wanted to participate in.  Mark two against Tinder.

My final thought around Tinder and social is how the app now pulls in information from your other social networks.  To sign up to Tinder you can use your Facebook account – and Tinder now shows you common connections as you browse people’s profiles.  I have to admit that I do not always like this.  I am not sure that I want to know that someone I might hook up with on Tinder is also friends with my ex, for example.  I have also discovered another potential issue here too as I have started getting friend and message requests through Facebook (& Instagram) from guys who have seen my profile on Tinder and rather than use the Tinder app to contact me go straight to one of these other social media networks.   I’m not sure if I actually find this a bit intrusive – if I was interested in you I’d swipe right – but at the same time I’m always quick to move Tinder chats off Tinder  anyway (it drains battery like there’s no tomorrow) so maybe it’s not that bad.  But still a potential mark three against Tinder.

Having now played around with Tinder’s new social functionality and having looked at it from this new perspective I think I could agree to having Tinder appear in this social media image.  The question for me though is whether Tinder is on the right path with these new “social” features?  I have been a huge fun of Tinder for years and have been very successful with it’s basic functionality, but I am starting to feel it may be getting a bit intrusive, as it leaches into my other social platforms. Maybe it is time to find a more anonymous dating app?  Especially given the potential intrusion of Tinder Social where I have no control over whether someone uses my profile or not.  Or maybe I’m just being a bit bah humbug because Miss B. got to enjoy all the fun of Tinder Social while I just watched helpless as she swiped some dodgy looking guys, and then found my phone constantly vibrating with these said groups trying to chat with me.  Either way whilst Tinder could be considered a social media app they also need to tread carefully as they are walking a fine line between being social and being intrusive.  What do you think?

 

 

 

 

 

 

What should good look like?

Over the years I have often been asked what good looks like when it comes to digital in pharma.  I have been asked for benchmarks and examples from other pharma.  Who does digital best is another popular question.  My answer to this is there is no single answer. There is no single pharma company that stands out across the board in digital.  There are some that have done great apps but have terrible websites, or have done great apps but failed on social media.

So when I am asked what good looks like I tend to reply – what do you think?  As a pharma company whether you are targeting HCPs or patients it is important to remember that these stakeholders are people – just like you and me.  Sometimes the way I see pharma talking about HCPs it is as if they are a separate species, a species that does not use Amazon or Tripadvisor, or any other online services.  Our stakeholders are however people like you are me, and like you and me they use online services for everything from shopping to banking.

That is why when I am asked what good looks like I ask my clients to think about their own use of digital.  What is that they like about Amazon?  What do they hate?  What are their own online behaviours?  Whilst where we shop and go for news online varies country to country basic behaviours and expectations are very similar.  No one likes pop up ads or pages that take forever to load.  No one enjoys clicking multiple times trying to find basic information.  In this day and age we all have certain expectations when it comes to digital, and we expect to be able to access information quickly and easily.  Why should we not expect the same basics from pharma?  Why should we are users have to battle to get to the information we are looking for?  Will we keep trying or just go somewhere else?

I don’t know about you but I know if a website, or other digital tool, does not give me what I want, and quickly, I will go elsewhere.  I am fairly certain the same rings true for pharma customers too.  Therefore when someone asks what good looks like – the answer is already there in our own day to day behaviours and expectations.  Don’t you think?

To SXSW or not that is the question

The time is rapidly approaching when tickets for SXSW 2017 go on sale.  This means the time is rapidly approaching that I need to make the decision – do I go again next year, for my third time, or not.

I went to SXSW for the first time in 2015 (you can read my posts about this trip here) and it was one of the most amazing experiences.  In fact it had such a great impact on me that I quit my job to go back to focusing on digital and social media strategy.  It was therefore natural that the minute tickets for SXSW 2016 went on sale I bought one and booked my hotel. I had to go back for more!

As is often the case though that first, amazing, experience was not replicated the second time round.  I think this was in part as it did not have that first-time “wow” – this time I knew what to expect and that first year I saw some truly inspirational things.   That is not to say I did not enjoy SXSW this year but I am not sure it was worth what I ended up paying for it (I left buying flights until the last minute which was a costly mistake and I opted to stay in a very nice expensive hotel).  Then again I did come back with my Galaxy Gear VR headset which is totally cool!

So let’s see.  I still have a few days to ponder on this.