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J&J strikes gold … and ignores it

So I was meant to write a summary of SXSW but I wanted to write about a post I saw today on J&J’s Facebook about autoimmune diseases (and in case you can’t be bothered to scroll through Facebook here the post on the J&J blog).  There were a couple of things that struck me.

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First the volume of engagement the post caused.  It was not just a few standalone comments but people were in active discussion with each other.  I have rarely seen that level of open, heartfelt conversation around a pharma post.  The discussion also really resonated with me, as an autoimmune patient.  The post was sharing the story of three autoimmune patients who overcame the struggles of their disease to get their lives back on track. Of course the thing that helped them all was pharmaceutical products and whilst no brand names were mentioned it is not a huge stretch of the imagination to realise they were talking about J&J products.

Whilst a few people were positive about the post, and how inspiring it was to see patients fight their disease and be able to overcome it and lead a relatively normal life, others had a very different point of view.  What they pointed out that actually many patients do not have the option of “overcoming” their disease and leading a normal life.  For many patients with an autoimmune disease there is no adequate treatment and daily life is a constant struggle.

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In fact one lady pointed out that these types of articles actually can have an adverse effect on patients as friends and family share them to show that other patients have managed … so why can’t you?  It can help foster the issue that many patients have were friends and family just do not get the struggle and perceive the disease to be something you can “get over” or something that is more in a patients head than being really that bad.

As an autoimmune patient myself I can tell you that despite medication (and I am 100% compliant btw) things do put me off kilter (like gluten).   When I am off kilter I can feel absolutely bloody awful.  It is not in my head – it is very real.  In fact since my last post, where I spoke about my brain fog and fatigue, I’ve had to experience one of the other nasty glitches this disease causes – emotional “trauma”.  I call it trauma because it is very upsetting. I have always been good at controlling my emotions and generally am a very level headed, laid back person but when my Hashimoto’s rears its ugly head my emotions can get all crazy.  I would liken it to the emotional turmoil some women go through during their periods.  One minute I’m fine and then next I’m bursting into tears.  I become over-sensitive and the slightest thing can set me off and become a huge issue.  The impact this can then have is that my over-reaction upsets me and makes me even more upset, spiralling down into an ever darker vortex.  It can take days for me to be okay after this and can lead to my depression re-appearing.

I am fortunate that I know myself well enough, and have battled depression on and off over the years (thank you Hashi’s!) that I have some great coping mechanisms (and some awesome friends who I can talk to).  Yesterday I was blubbing my eyes out, feeling like there was a raw gaping hole in my chest, today thanks to some of these coping mechanisms it is more like a small sore.  Tomorrow I will still be fragile but hopefully with care and self-patience in a few days this will all be just a bad memory and I will have my life back.  I am also fortunate that I have a job I love because it also really helps to just focus on my work and bury my head in that rather than dwell on the rollercoaster of emotions that is waging its own little war in my body.

And so I come onto my second point about the J&J post.  With all of this engagement happening as I went through all the posts there was one glaring omission.  There was absolutely no response from J&J!  What a wasted opportunity to really engage in a meaningful dialogue with your customers (and yes your patients are also your customers – not just HCPs).  Where was even the “thank you for your comments” type of response? Nothing.  A classic pharma one directional post – a “here you go enjoy but we don’t want to talk to you” attitude.  As an autoimmune patient I really welcome that J&J is sharing posts on this disease area, which gets so much less spotlight than cancer or heart disease, and yet impacts just as many, if not more, people.  I would have liked to thank J&J for the post and the subsequent discussion and would have valued their input into the dialogue.

Yes we are talking about patients where J&J medications have not had this same positive impact but what a great opportunity to show that you still care – and perhaps if relevant to point out how much money you are investing into R&D in this area.  It is also a fantastic opportunity to engage with patients and learn some valuable insights, which in turn could help generate even more engaging content.  I could imagine this would make for a great tweetchat or other posts pulling out some of the issues highlighted in the discussion.  Having worked for pharma brands I know the constant struggle to find that golden content that resonates and works.  Here it is being handed to J&J on a platter.

J&J you hit gold with your post but rather than mine that gold, and share its riches, you have just let it lie and fade.

Oh and by the way one of the patients in the post also joined the conversation … making J&J’s absence all the more glaring.  Hats off to the said patient – for sharing her story but also for the compassion, and openness with which she joined the discussion.

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.

 

 

 

 

 

 

 

 

 

 

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!

 

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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De Puy and their patients

This morning I spotted an article in The Telegraph about how patients may have been fitted with faulty hip replacements due to a manufacturing error at the De Puy plant.  According to the article De Puy is not being exactly responsive in answering questions on this and may have known about the problem for some time.  Ill fitted hip replacements can be very painful for patients and can even be a patient safety issue.

For me a few things sprung out of this issue.  First and foremost no healthcare manufacturer should ever ignore potential patient safety issues and if De Puy knew about this flaw  they had a duty of care to their patients to inform the regulators so that said patients could be closely monitored for potential problems.  We were all appalled by the recent car scandal where manufacturers lied and tried to ignore a manufacturing fault – but if De Puy did knowingly ignored this problem then they too deserve the same villification, if not more.  After all here we are talking about surgically implanted devices not cars – and a potential direct risk to patient safety.  After the healthcare’s efforts to address its reputation problems I will also be disgusted if this turns out to be another example of “big bad pharma” (whilst De Puy is a device company it is owned by pharma’s J&J).

Shocked at this news post I naturally went straight to the company’s home page to see if there was more news.  Afterall if I were a patient or had a member of the family with a De Puy hip joint I would presume that the company has posted something to their website to provide me with information.  I would also do the same if I worked for the media btw.  I was therefore very shocked at what I found on their website.

According to their website they are inspired by us (I read that as including patients) and listen to patients and yet there is no option for patients on the website!  As the image below shows they are only interested in HCPs, job seekers and vets.  What about the poor patients?  And indeed what about the general public and media?

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In this day and age not having a general information website open to the public is questionable to say the least.  This is doubly the case for devices which do not face the same strict regulatory requirements as pharma.  Now clearly HCPs are the company’s main stakeholders, which is fair enough, but with most people now turning to the internet for information, including patient’s friends and family, it seems ludicrous not to offer up some general information about the product that is going to be surgically implanted into the patient. My mother is likely to need a hip replacement in the near future and I will want to know all the details about the product, including the manufacturer, and I will visit their website and expect to find information there.

This is of course also an issue today with new of a faulty product hitting the news.  How can I trust a company that is apparently selling faulty hip replacements but refuses to acknowledge its end users the patients?  How can I trust a company that refuses to communicate with me – even if only to tell me that due to regulatory requirements they cannot share certain information?

The other thing I did was to check their Twitter handle – again an issue like this raises questions I want to ask the company via my medium of choice, i.e. social media.  Whilst it looks like someone has secured the Twitter handle that is as far as it goes.  Whether it is De Puy or someone else who owns this is unclear but either way this looks bad on De Puy.  Firstly if someone else has secured the handle then shame on De Puy for not having noticed this and resolved this issue.  If it is their handle then at least take ownership and make it look formal and just state that you have not launched it yet.  As it is it just further adds to my bad impression of De Puy.

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I know I am just an insignificant carer and my mother just another patient but I for one will be talking to my parents about this and suggesting that if their surgeon suggests a De Puy product they ask for other options.  I for one do not trust this company to insert a device into my mother.  I wonder how many other carers and patients will feel the same as a result of today’s news and today’s lack of transparency from De Puy?

Social media in the pharmaceutical industry

This week I had the immense pleasure of attending SMI’s Social Media in the Pharmaceutical Industry conference.  As always I enjoyed the event, catching up with many of the #hcsmeu twitterati and hearing insights from the industry and patients.

SMI SlideThe event started for me on Tuesday as I led a workshop looking at how pharma can successfully engage using social media (you can find my presentation here).  With a small group we discussed some of the common issues that we still face in this space, for example internal barriers, lack of adequate process and poor understanding of this channel.

Most of these issues have been around for many years now and it does sadden me that they still need to be addressed in so many pharmacos.  On the other hand it is great to be able to have a much richer and deeper set of case studies to use in the battle in bringing some of these barriers down.  “We can’t because of regulations” clearly no longer cuts it – regulations have been clearly shown to not be a barrier.  Another element that appears to still be an issue, and which saddens me greatly, is the view that social media does not need to be approached strategically.  Whilst I am a huge advocate of pharma companies getting involved in social media I do not condone or recommend doing social media for the sake of it.  There does need to be a clear strategy and plan – otherwise you are just taking pot shots in the dark – and frankly doing any form of business, marketing or communication without a strategy is just plain old bad business.

I was very  happy however to see on Day 1 of the conference Stine Sorensen from Lundbeck discussing strategy, and not only its importance but the importance of having a regularly updated strategy (in this case she updates it every 6 months).  I was also very happy to hear Stine mention that she now has the review & approval time for social media content down to 25minutes.  I have had quite a few clients tell me that 24 hour approval times are unrealisitic so it is great to be able to counter this with the fact that quite a few companies now have process in place for near-to-live response.  Not being able to respond very rapidly due to inappropriate review & approval process should no longer be a barrier (and mini self plug – I can help you work this out).  In fact Stine supported everything I always say – there is no longer any room for excuses around not doing social media.  Those days are gone and, as her slides so beautifully shows, excuses are useless!

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Another great presentation was given by my friend Jackie Cuyvers, who recently left ZS to set up her own social listening company.  Jackie is an extremely experienced social listener and she now specialises in doing global / local listening.  Besides flagging the importance of asking the right, business questions, she talked us through some of the implications of social listening, in particular some of the linguistic and cultural elements that we tend not to think about.  She mentioned how even in the same language there are big differences across countries and groups in use of terminology.  In the UK for example “pants” means something quite different from “pants” in the US (underwear versus trousers) or the term “good crack” which means different things in the US and Ireland.  She also made the point that just translating content directly often totally overlooks cultural nuances and local idiosyncrasies. In English for example we use the term “kick the bucket” but in Slovenia the translation of this term would be “whispering with crabs”.  This has potentially huge implications on companies running social listening research, especially if they are dependend on pure technology or English language researchers.  I also loved the fact that Jackie got an image of a dog into the conference – tres social!

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Jackie’s summary of the 3 steps to social listening

One emphasis that came through throughout the conference though was the importance of patients and the incredible role they play, and the huge value that social media brings to them.  The event was actually kicked off by three fabulous ladies, Birgit Bauer, Silja Chouquet and Marlo Donato Love who shared some great insights from a patient’s perspective and mentioned one of my favourite quotes “patients are the most underutilised resource in the pharmaceutical industry”.  They talked about the importance of getting patients involved and the role they can play in working with pharma.  Silja then also went on to talk about patients participating and “attending” medical conference virtually via social media.  In fact she raised the point that whilst doctor’s are the main participants online at conferences patients are also increasingly getting involved as they search for more information on their conditions.  She also made some great points about the futility of pharma’s current approach to using promoted tweets and how this is potentially going to be a big issue resulting in dilution of high value content on Twitter.

Perhaps a highlight for me though was Trevor Fossey  who talked us through the impact of digital on patients and the NHS.  I was nearly crying as he told us that he has access to his NHS medical record online, and that of this wife for whom he cares, and that as of 1st April every NHS patient has a right to access their medical record online.  OMG!  As a UK patient, with a chronic autoimmune disease, not having access to my medical records has been a big issue.  I have been to numerous doctors, privately in the UK and abroad, and have never been able to show them my NHS blood results as I did not have access to them.  Of course the fact that I now live abroad and don’t have a GP means in all liklihood I still won’t be able to access them but the realisation of what this means for other UK patients, including my elderly parents, was profound.  Trevor mentioned some fantastic points about how impactful empowered patients really are – and how much money they save the NHS.  I can tell you I was certainly not the only person in the room blown away but Trevor’s presentation – despite being a room full of digitally savvy people none of us where aware of our right to access our medical records online.  Trevor found himself a whole group of advocates at the event (I for one have alreay shared to news to all my UK friends and family).

There were so many other great presentations, such as Letizia Affinito who showed us some great non-pharma case studies, and Pinal Patel from BMS who showed us how they are using social media in clinical trials – and more importantly how they are listening to patients and adapting their process in response to patient feedback.  An awesome point was made that often once a trial is over patients are just left alone – but really we should be thanking them and sharing the results with them (something BMS plans to do now thanks to feedback).  Charlotte Roth from Actelion also gave the Corporate POV around social media, bringing an additional dimension to the conference, while Liz Skrbkova shared perspectives around multi-channel engagement and online influencers. I also have to add that IMHO Liz was one of the best dressed ladies at the event 🙂

Last but not least was the pleasure of meeting all these amazing people and having some great discussions, including over wine and dinner.  Dinner also gave me the opportunity to catch up with a couple more of the #hcsmeu and the next day I was able to sample some of the most amazing cocktails at the Alchemist in the evening.  Afterall what would a social media conference be if it didn’t include the “social” bit!

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Cheers!

 

 

 

 

 

All I wanted for Christmas …

This time of year is often a time of reflection.  It is a time of thinking about what you really want for Christmas – what items go on that famous Christmas list.  What are the things you would really love Santa to bring you – and being Santa you can wish for whatever you want.

This year there were some practical things on my list – including an electric blanket  and a pasta making machine (both of which I got – yay!).  There were also though some wishes and hopes on the list.  I have one wish every year and that is for donations and miracles for the dogs in the Bucov shelter that I support through Hope for Romanian Strays.  With now over 1500 stray dogs living in the shelter (with an original capacity for 700 dogs) and of those over 300 puppies, there is never enough funds to help them all.  The authorities do not provide enough food for that many dogs so it is up to us, and our supporters, to provide the additional food and care to try to keep the dogs alive.  There are constant medical and emergency cases, like newly born puppies or injured dogs dumped at the shelter gates – essentially being left there to die.  My wish did partly come true as thanks to some generous supporters and fundraising the dogs did get a Christmas meal.  This is of course a drop in the ocean but at least they did not go hungry on that special day.

29.12.15

Puppies in the Bucov shelter getting their Christmas meal

My other Christmas wish this year relates to work.  Having left ZS in March I have gone back to working as a freelance consultant, culminating in an extremely busy December.  However with my contract coming to an end in January I am again looking for the next opportunity.  Whilst I would love the stability of a permanent job, the reality is there are not that many permanent roles for someone with my level of expertise and seniority.  I also have such a huge passion (and depth of experience) for my area of specialisation (healthcare digital and social media strategy) that I have no desire to even consider anything else (except perhaps animal rescue!).    I do also love the flexibility that working as a freelance brings and so I am putting feelers out again for some more contract work.  As always it is a balancing act between finding new opportunities and meeting the requirements for the current contract – and this is one of the down sides of freelance work.  I will have to start looking for the next opportunity whilst working flat out on the current contract – and find time to rescue dogs and take care of my health and personal life. I’m tired already just thinking about it!  And so I make my wish and I hope that one of my tweets or posts ends up fortuously in front of the right person at the right time and I end up with a new contract for 2016.  Fingers crossed ….

Linked to the above wish is another work related wish – a new laptop in the shape of the new Mircosoft Surface Pro.  Sadly this is not a wish that Santa was able to grant this Christmas because Microsoft decided that Europeans are second class citizens compared to the US and that we have to wait 6 months to get our hands on this new shiny gem.  My wish will have to continue being a wish only until March when I hear the Surface Pro will finally go on sale in the UK.  Annoying.

My final big Christmas wish of course has to be health related.  If you follow my posts then you know I have an autoimmune disorder called Hashimoto’s.  I think most patients with autoimmune disorders wish for improved (or at least stable) health.  When I am happy and love what I am doing (and get plenty of sleep, eat well, etc.) I have no issues whatsoever with my condition.  Sadly if I get over-stressed, sleep badly, or slip up on my food (e.g. eat something with Gluten in) I end up feeling pretty pants.  Of course I plod on but there will always be a wish for that magic pill to come along and make life easier – or indeed cure my condition.  That will stay a wish for a long time though as that is unlikely to happen!  My other, more realistic, wish therefore is that more people are educated about the reality of autoimmune diseases, including doctors.

I got to spend my Christmas this year with my family, including my brother who is a GP.  I was really saddened to hear that he had no idea the impact gluten (and diet in general) can have on patients with autoimmune diseases.  I am not sure if he took my gluten free diet that seriously – I suspect like many doctors he felt that just taking my pills should be remedy enough.  This makes me sad as I know the difference lifestyle makes on quality of life, and disease progression, for many patients with autoimmune diseases, but if doctors do not provide information or even support in this area then life just gets that bit harder.  There really is nothing more frustrating that having your condition dismissed by your doctor – or indeed your online research either.  Yes there is a large amount of incorrect and bad information online, but there is also a huge amount of life changing, accurate information out there.  The fact that some of this comes from patients makes it no less valuable or accurate.  Afterall how can a healthy doctor really understand what living with an autoimmune condition feels like and who are they to judge how we feel if we make lifestyle changes?  And so I wish that more doctors listen to their autoimmune patients and try to understand their needs and conditions better.  I wish more autoimmune patients had access to a great doctor like I do here in Switzerland.

If I could have my wish for a healthy 2016 and a new contract or opportunity to come true then I can also help make my first wish come true – I would be able to make a large donation to my charity and thereby rescue the lives of more vulnerable, neglected dogs in Romania.  So should you hear of any opportunities (perm or contract) then do let me know … and you can do your bit to help my wishes come true!

 

29.12.15-4

Sahsa – one of Hope for Romanian Strays rescues guarding the Christmas food for the shelter dogs – and looking very festive in the process!

 

 

#SXSW- Wearables: saving lives and improving outcomes

WearablesI recently submitted my proposal to speak at SXSW next year on “Wearables: saving lives and improving outcomes” and the public voting on proposals starts today.  It would be a dream to speak there but I know the competition is stiff so I have all my fingers and toes crossed and will be asking everyone to vote for me!

Picture2If you follow my blog you may have read my posts from earlier this year.  That was my first time at SXSW and I have to admit it was a life changing event resulting in me leaving my job to go back to focus on my true love – digital strategy and innovation in healthcare.  The event was incredibly inspiring,  not only seeing such amazing innovation but also seeing how it could be applied to improve the lives of patients with chronic diseases like myself. As I listened to some of these amazing talks I thought how great it would be if I could also share some of my knowledge, passion and inspiration in this area, and so when my friend Jackie Cuyvers suggested I submit a proposal I went for it!  I was actually interviewed for national TV about the impact of wearables so I thought why not speak about this topic!

I wanted to share want inspires me the most – how technology is having such a huge impact on patient’s lives and the revolutionary changes that are happening in healthcare as result, not just in terms of technology but also in the culture and mindset change.  As an autoimmune patient myself I have a huge amount to thank for the internet, thanks to the information I found that led to my diagnosis, and the improved quality of life, but also in the inspiration from other patients that drove me to be an empowered patient and demand better health from my physicians.  Back then I had got to the point were I could hardly get out of bed any more and had such extreme brainfog I was struggling to complete sentences; I now lead a normal, active life – thanks to the information and support I received online.

wearables3It is this that drives my passion at looking how innovation and new technology can do more for patients and help turn other people’s lives around, or indeed save them.  In January I spoke about how social media is saving lives and now I want to speak about how wearables also have this capability.  Wearables is of course the big thing this year, with a huge swathe of new devices of all shapes, sizes and uses being launched.  The big ones are off course in the “health & fitness” arena like fitbit or new smartwatches such as the Apple watch.  Everyone is talking about them and I have quite a few friends who have purchased new smartwatches to track their sports activities (I myself have invested in the new Swimmo watch).  These devices are fantastic to help the reasonably healthy get even more healthy.  But what about those that are not well or fit enough to run marathons or swim kilometres?

wearables4The real impact of wearables will come in how they are developed and adapted for those people who face real health challenges, whether it be Alzheimer’s or severe Asthma.  Being able to wear a device which provides live support and information or that conatcts HCPs or family in the case of a medical emergency can have a huge impact in improving a patient’s life.  Some options in this area already exist but few wearables on the market have been specifically designed for this purpose.  Right now much wearable tech is focusing on the lucrative “fitness” and consumer markets but once we start to see more wearables being specifically designed for certain diseases then we still start to see some incredibly inspirational outcomes thanks to this technology.

It is on this topic that I hope to head to and speak at SXSW in March next year, with my friend Jackie (who will be speaking about social media listening and the implications of culture and language – think about the British and American understanding of the word “pants”).  I would ask that you please help me achieve this goal by voting for me here by searching for “Fulford”, and don’t let me go alone – please also vote for Jackie too!

For full details of how to vote have a look at this document with instructions that I put together.  The final thing I would like to say is that for every vote I get I will make a donation to my charity Hope for Romanian Strays which works tirelessly to rescue stray and injured dogs in Romania – so vote for me and help stray dogs!

Patients are not total idiots!

Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today.  According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals.  In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.

My first jaw dropping moment was when I read:

“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”

“……….”  That’s me being speechless.  Really?  So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not?  Looking at this one point I go back to my own experience.  I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head.  This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror!  But doctors are always right according to Mr Yaraghi!) and something was wrong.  I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK.  It turned out that stupid patient me was actually right and the specialist I had first seen was wrong.  I had Hashimoto’s and I needed to do more than just take my pills to get back to normal.  Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.

thyroid

This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is.  Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease.  This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease.  This is all thanks to this amazing tool called the internet and social media.  I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news.  This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.

empowered patient

Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare.  He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either.  What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness.  In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg).  This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight).  I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.

“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”

Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted.  Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element.  If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes.  After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life.  If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her.  I think it is fairly clear from this just how important the patient physician interaction is.

When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews.  Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages.  It is also not just about the medicine any more.  It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking.  You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.

So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare.  The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end.  In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system.  I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.

walk a mile

The short lifespan of a wearable

screen-shot-2014-08-12-at-4-25-46-pmWearables are this year’s hot item.  They are trendy and all the cool kids want one.  They can link to your mobile, they can tell you your heart rate, how far you have run, calories burnt and they are shiny.  I want one.

Or rather I want another one and this time I want one that actually suits my activity and lifestyle not that of some marathon running health junky.  I also want a wearable that actually has a decent lifespan – both in terms of battery life but also in terms of years of use.

My first request, that of a wearable that suits me, has been quite hard to find.  The majority of consumer wearables and health apps are heavily focused on jogging or walking.  My recently purchased Samsung S6 has a health app, S Health, which seems okay, ticking quite a few boxes, as long as you are into running.   You see my problem is that I do not jog and do not ever intend to jog (my body is not made for running). I walk a fair bit but not as a “sport”.  The only real sport I do is swimming.  Whilst the app does give you the option of adding a whole array of other sports the parameters for these is very restricted, and IMHO pretty rubbish. I am a “proper” swimmer, and even had lessons a few years ago to perfect my strokes.  I swim a reasonably paced front crawl and I try to swim between 2-3km a day and I swim 1km in about 15 minutes.  My S Health app however only gives me the variable of time – I cannot input what strokes or distance along with time.  I swim faster than a lot of swimmers in the pool, doing a strenuous stroke, and what I swim in 30 minutes is very different from what they swim.  Equally those powering past me in the other lane are swimming way more laps in that time frame.  Yet the S Health app does not allow any input other than time.  That is pretty rubbish.

PoolmatePinkSo how about buying a wearable for swimming?  Well I have.  Been there done that.  I bought a PoolMate Swimmers watch which counts my laps, speed, distance, efficiency and time. I loved it!  It was great and allowed me to concentrate on my swimming without having to worry about counting laps. It also finally allowed me to get an idea of how I swim and how many calories I burn (turns out I am quite an efficient swimmer).  Sadly though it is not “smart” so I cannot synch it to my phone or track my progress with an app.  It does however come in colours other than the usual dull black (I opted for the baby blue version).

Then there is the lifespan of the product.  I bought my PoolMate just over a year ago and have been using it on a very regular basis, but recently it has stopped counting laps properly.  I am gutted as I now have to go back to counting my laps.  The poolmate is however not the first wearable I have had – I had a Nike Fuelband too.  That also turned out to be cool to start with before it went demented. In the case of the Fuelband I gave up on it when I had done a 2 1/2 hour hike up a Swiss mountain and the stupid thing told me I had not met my target of steps for the day!

Both of these products started with high cool and wow factors and I was very happy with them, only for them to then shatter my happiness by losing accuracy.  As I look at many of the new wearables and technology hitting the market I notice that we do not seem to be that fussed anymore about product lifespan.  Many of the new smartwatches may be mega shiny but they often only have a battery life of a day!  What is the point of a watch that you need to charge every day?!  The same actually goes for phones – but as long as my phone last a day with full use I am happy (my old iPhone 5 did not manage this at all in the end – it barely made 1/2 day).  We seem to have moved into a world where we are happy for products to have a short lifespan and batter life – or is it in fact that we have just accepted that this is the new world because this is what the manufacturers offer us?  Newer phones come out with more shiny functionalities but not much improvement on batter power.  Wearables last a year or two and then there is the expectation that we will upgrade or buy a new one.  Is this right?  I feel like it shouldn’t be.

SwimmoThat said I have just gone and followed the trend in the purchase of my latest wearable.  Fed up with my poolmate I clicked on an advert on Facebook (yes they sometimes work!) to a kickstarter page for the Swimmo Smartwatch.  Looking at the specs and the description I got very excited.  It sounds like exactly the kind of wearable I am after, as a non-jogging swimmer. It counts laps, tracks my swimming, has a heart monitor, is linked to an app and tells the time.   In fact I got so excited I pledged!  What I didn’t think about was the battery life and whether it would actually be better to wait until it was on the market to see reviews and whether it actually works.  But no – I got lost in the shiny shiny excitement, and a bit also in the “ooooh” of being involved in the kickstarter stage.  I suspect my new watch when it comes will indeed be shiny but I will probably have to charge it everyday.  On the other hand I like their Facebook page – they are clearly really into swimming – and I love the photos on their Facebook page too 🙂

swimmo2