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!

 

 

 

 

 

Oi you!

Following the post-Christmas trend I too find myself coming down with a nasty cold.  Just like my parents and friends I have that horrid sore throat, chesty cough and dratted runny nose.  I can also add fatigue and dizziness to the list – yawn …. (you still there?). I sit at home wrapped in a blanket feeling like I really need to do something proactive in my search for new opportunities but at the same time I lack the energy to do much.

Writing a blog is in theory a relatively easy and quick thing to do.  However as anyone who regularly blogs might tell you it is not always that straightforward.  You need to be inspired to write something.  Having a cold stiffles inspiration in my case.  So I searched for something to write about and whenever I search for information I always turn to Twitter.  Yay to Twitter!  In my search today I can across some very interesting posts on 3D printing to a debate on whether health apps can benefit healthy people.

Typical to social media content consumers, and also as a result of my fatigued brain, I only glanced at these and read the bits that seemed interesting.  Then it dawned on me just how lazy we have become in this 8 second world (the length of time you have to grab someone’s attention).  The 8 second rule is so true! We are bombarded with so much live and new content everyday when we go online (including across multiple devices at the same time) that something really needs to stand out to make us look.  This is of course where the impact of visual content really wins ground – afterall “a picture is worth a thousand words”.  When it comes to text we really do have to use attention grabbing titles – such as “oi you!”.

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Of course it takes more than a pretty picture or an attention grabbing title though to keep hold of that attention.  Do you really have something interesting to share or to say?  Or are you just producing content to meet your planned editorial calendar?  Have you actually looked around at what your content is currently competing with?  If you prepared it a while back is it still as relevant or attention grabbing as it could have been?  Too often we get lost in doing what we have to do to meet our goals, without taking the time to look around and just check that we are in synch with what our customers or readers are interested in right now.  Oh and by the way you aren’t just competing against your competitors for people’s time you are competing against the likes of #watermelonboy and #cutepuppy.

If you have read this far then I salute you and I clearly have written something that grabbed enough of your attention to merit me getting out of bed and trawling the internet for inspiration.  Thank you for reading and do come back soon for more 8 second content!

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(Ps. I made the smoked salmon nibbly bits myself and this dog above is looking for a forever home – go to http://www.hopeforstrays.com for more information)

Did I mention #cutepuppies?

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The Dangers of Not Being on Social Media

Another great reminder of why ignoring social media is no longer an option. The conversation is happening with or without you but at least by participating you can participate in the conversation and potentially prevent an issue turning into a crisis.

Dr Eric Levi

A few weeks ago, this cartoon strip appeared by @TheBadDr Ian Williams

There’s a certain helplessness in the physician. “There’s nothing much we can do about that.”

Well, actually, there are a few things we CAN do about that. Doctors can actually manage their social media presence effectively through some simple means. Social media is prevalent, inevitable, and is a significant part of mainstream media. Social media is one of the most powerful tools we have in communication and public health engagement.

To illustrate the dangers of NOT being on Social Media, here’s what happened in the last 5 hours in Australia.

The Australian Doctor Tweeted this:

AustDr
The Royal Australian & New Zealand College of Obstetricians and Gynaecologists (RANZCOG) Victoria and Tasmania branch organized a regional conference which includes a debate which was provocatively titled. It was probably done for controversial effect but had a negative reception all around. Many…

View original post 547 more words

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.

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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!

 

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

 

 

The hopes and disappointments and hopes of the Surface Book

Last week I posted about my need to purchase a new laptop and my excitement about the release of the new Microsoft Surface Pro 4 and Surface Book.  I am now travelling weekly and really need to invest in a more portable shiny new laptop or tablet/laptop mix and having done my research I decided that I absolutely have to have the new Surface Book.  It ticks all of my boxes in that it is a powerful laptop, is far more portable than my current 18″ big boy, runs Windows (my current tablet doesn’t that well), and can work as a tablet with the keyboard providing the extra battery life and oomph to give you a full day’s work (like my current tablet) – and of course it looks shiny.  OMG I want this shiny toy!!!  I had heard of the announcement and whilst I really need a new laptop immediately I waited until October 6th as knew Microsoft would make an announcement and there it was – my new desire.  Whilst the Surface Pro 4 also looks great it doesn’t quite hit the Book in my opinion.  I was so very excited!

You can then imagine my displeasure when the next couple of days there was still no mention of a release date for Europe.  To me this seems very odd – in today’s global age why would you only announce for the US and not the ROW?  Then my displeasure turned to horror as I found out that Microsoft probably won’t be releasing in Europe until sometime next year – with the vague mention of somewhere between January and March (which to me suggests it will probably be more likely to be March).  OMG NOOOOO!!!  How could this be?!  How could a global company not be selling in Europe?!  How could Microsoft get my hopes, and other laptop seekers like @Ubermarketer, so excited and then dash our hopes so cruelly?! Like myself @Ubermarketer needs a laptop now – not sometime next year!  Microsoft is making us have to make the painful choice of either waiting 6 months or going with another brand – when we know our desired new shiny toy is already out there but just out of our reach.

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Microsoft1Naturally I turned to Twitter to vent my pain and anger. I tweeted @microsofthelps to beg for help.  I really need that new Surface Book laptop could they please help me?  Pretty please?  They responded pretty promptly with a lovely tweet asking how they could help.  When I told them they forwarded my tweet to @SurfaceSupport who responded with what looked like suspiciously like an automated response sending me to the US online shop.  I responded that I was not in the US (as already mentioned in my previous tweets with @Microsofthelps) – could they help?  They then responded asking me where I was in Europe – I replied in Switzerland and the UK (I am British but live in Switzerland) and that I would travel anywhere in Europe to get my hands on the Surface Book – that is how much I want one!!  Now of course I realise that that may not be ideal as I want a UK (or at least a US) keyboard not a German, French, or other language one.

So now I wait.  Anxiously.  Checking my twitter every 30 minutes.  Hoping.  Praying.  Will they have a solution for me?  Will they be able to help me in my desperate plight to get my hands on a Surface Book this year?  My heart is beating with anticipation and nervousness.  What will they reply?  What this space to find out …..

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The problem with big new shiny toys

Yesterday Microsoft announced the launch of its shiny new toys including the Surface Pro 4 and the Surface book.  I have eagerly been awaiting this announcement as I need to buy myself a new “laptop”.  As luck would have it I heard about this announcement (thank you Twitter) as otherwise I would have already gone ahead and bought myself a new laptop or tablet hybrid like the Surface Pro 3.  I was dawdling though as none of the tablet hybrids quite fitted all my expectations (the Surface Pro 3 for example apparently has a bad battery life).  Whilst I actually could do with a new shiny toy like this sooner rather than later as always I would rather buy the latest.

This has in fact been my issue in the past – I want the latest and the best when it comes to technology (well within my price range of course).  Way back in the day I was a mini-disc user (and huge fan – loved that technology).  My mini-disc sadly faded into obsolescence.  For my MBA I bought a top end Toshiba laptop which I loved (and still have gathering dust at my parents house).  When it became time to buy a new laptop I did my research.  I did not want an Apple (I am not, nor will I ever be an Apple fan). I wanted a high end, high speed, high capacity laptop with an mindblowingly awesome screen for working but also watching films.   My research led me to the desktop replacement Acer Aspire, with a whopping 18inch screen and for the time awesome capacity and speed.  My friends wowed when I told them I had over 300 films sitting on my hard-drive (legally obtained in Switzerland I might add).  No one else’s laptop at the time came close to my big shiny boy.  It even survived a full onslaught from a delinquent large glass of wine.  I still use this laptop to this day and I still love it. It is now over 6 years old and going strong.  It does however need an MOT and it is not really the most portable of laptops.

When it came to choosing a tablet (all the kids where buying them) I went through a similar process of doing my research and finding something that met my exact needs.  I wanted a non-Apple tablet that had an attachable keyboard, was great for film watching and had a good battery life.  I found the Asus Transformer which was at the time rated as the best tablet out there (some rated it higher than the iPad).  It truly is a shiny toy – again everyone who sees it is impressed.  It is a great tablet but it is the keyboard that makes it so special.  It is a solid attachable “normal” keyboard with a trackpad but that acts as an extra battery source giving the tablet up to 10 hours of battery life.  When on it looks like a very small neat laptop that is easy and light to carry with one hand.  I love my tablet and have watched many hours of video and written many a blog post on it.   It runs on Android which is great – bar the fact that it makes it fairly useless for working on with Office.  While I had a company laptop this was not really an issue but now that I am independent again and traveling to client sites it presents an issue.

My issue now then is that I have two awesome top of the range in their day devices, that still rock, but which no longer quite meet my needs.  I found myself  having to travel to the client site with my big laptop to work on there and my table to entertain myself and read documents on for the 4 1/2 hour train journey.  This was not optimal given the weight and size of my laptop.  So it was that I started considering buying a new shiny toy.  The thing was did not really want an “old fashioned” laptop but I also didn’t want a hard core tablet either.

And so it was that I have been eagerly awaiting the announcement from Microsoft on their new & improved Surface Pro 4.  I was then doubly happy to hear about the Surface Book which sounds very much like my tablet but way better as it is a true laptop- tablet hybrid (the keyboard like the Asus acts as an extra batter).  Now I face the dilemma – Pro 4 or Book? However seeing as neither device is on the market just yet so I have to wait a few weeks before purchasing them giving me a little more time to think.  Right now I am leaning towards the Surface Book – but I welcome any feedback or thoughts!  In the meantime I will continue to use and enjoy my old shiny toys.

My shiny toys

My shiny toys

Wearables – worth the hype?

Today I went for my regular swim with my Poolmate watch and found myself very frustrated when yet again I found that it was not counting my laps correctly.  I presume I am probably like quite a few wearable owners in that I do not really use all the functions of my wearable device but I do expect it to get the basics right.  In this case the basic function is counting my laps.   Learning how efficient my strokes are is great but not much help if the device is not counting the laps correctly.  I have written previously about my frustration with wearables when they don’t work and again I find myself in the same position.   Not that long ago life existed without wearables and we seemed to do fine.  Given my personal “fail” rate with my devices I wonder if they really are worth all the hype … or where things better before they came along?

The answer IMHO is yes and no.  I think wearable technology is getting over-hyped but at the same time I think the opportunities that these devices offer are worth some hype nonetheless.  Whilst my fails where frustrating they did not have a huge negative impact on my life (bar having to go back to counting laps in my head).  In fact for many people a wearable is just a helpful addition to their fitness routine, which may indeed have a positive outcome on their health, for example the average fitbit user actually takes 43% more steps per day.  If the device fails the worst case scenario is that for a while we may do less exercise – or just go back to how we always did it in the past.

However in other situations wearables could have a significant impact on people’s lives and in these cases the last thing you want is a device that does not work (especially if the fail is not spotted quickly).  There are devices for example which patients could be using as a real support, for example in diseases like Alzheimer’s, or which have a large impact on their healthcare.  Budgets could also be impacted, for example a recent study found that hospital costs dropped 6% for those who were inactive and became active.  Failing devices which patients have become dependent on could lead to higher re-admissions and subsequent costs, or worse.

Linking the potentially very important impact from these wearable devices for some patients to a questionable device reliability does quite rightly result in a red warning flag.  Currently many of the devices are being built for consumer fitness and a fail rate just results in disgruntled, perhaps slightly less fit, consumers.  Moving these devices then into a more critical health environment without taking into account the greater impact could be a serious concern.  Are these wearable technology companies doing enough to test their devices for duration and reliability in a more critical environment?  Or are they just adapting consumer devices to seize a growing opportunity in the healthcare market? Are regulations adequate for these wearables – or indeed are regulations hindering innovation?

These are just some of the questions that accompany the hype of wearable devices.  Despite my frustration today with my device I am still a big advocate for wearable technology simply because I do believe with time we will see some very positive impact coming from them for patients.  In the meantime though perhaps we had best be careful of the over-hype and set our expectations around wearables more realistically.  I for one am looking forward to getting my new Swimmo watch but I am also taking into account that it may not be all it is cracked up to be – or all that I hope – but if it can count my laps correctly for the next few years I will be happy.

And if I get to talk about all of this at #SXSW next year I will be doubly happy!  If you have not done so already please vote for me: http://panelpicker.sxsw.com/vote/48954

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#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!

Using wearable tech for Alzheimer’s … finally!

The other week I shared a very interesting article about a study looking to use wearables in Alzheimer’s disease. This is a disease that takes a huge toll not only out of the patients but also on family and carers (often the same thing).  As a person deteriorates the memory loss and confusion associated with the disease can get very dangerous, for example as patients start leaving the cooker on or getting lost outside, like this old lady.  The result is that patients often end up having to go into care homes sooner than they would like because it becomes too hard to watch over them 24/7, and because they could end up injuring themselves.  Placing patients into care homes sooner helps carers but also places a huge financial burden on those paying for the care home (which may also be the carers).

So it is great to see people looking to use wearables to help support Alzheimer’s patients, and their carers, and to try to delay the inevitable move into a care home.  I fully support this and was very excited to read about this new study … but I am also sad.  About five years ago, before wearables become the next hot thing, I had already put together a suggestion around using technology, including a wearable device, to support Alzheimer’s patients and their carers.  I had tried to have a few conversations with pharma companies and the agency I was with but this idea was just too innovative at the time for anyone to pay attention to.  Shame. Firstly how many patient’s and their carers lives would have been improved as a result during those five years?  Secondly what a huge benefit a pharma company would have seen by being that innovative and reaping five years worth of experience and closer understanding and relationships with their Alzheimer’s stakeholders?

Back then I had suggested a pharma company partner with a technology company like LG, who at the time was developing an early stage “smart” watch using their mobile tech capabilities.  This would have been a very innovative move for pharma – partnering with tech companies was not happening then and it would be a few more years before Novartis partnered with Google to develop the glucose monitoring contact lenses.  The idea of the partnership would have been to combine the tech partners capabilities around building a mobile monitoring device (aka wearable tech) and the pharma company’s understanding of the health issues and obstacles faced by Alzheimer’s patients and their carers.

In my mind the end product would have been a watch (or some form of what is now called a wearable) worn by the patient.  This would have had a number of functionalities based on what stage the patient was at.  For early stage patient’s the device would have acted more like a reminder and would be more for patient only use.  It would have used location tracking to provide the patient with information on where they were and, based on what was pre-programmed into the device for that day, what they were there for. The idea here to help patients stay self sufficient for longer, and reduce the distress of memory loss.

As the disease developed, and family and carers got more involved, the tracking functionality could also be used to locate the patient.  I remember having discussions with a few friends around this and them questioning personal privacy but I pointed out at this stage the alternative could be restricted movement for the patient.  This device would mean they would still have freedom to live at home but if they went missing or were out somewhere for a certain amount of time (again based on what was pre-programmed in) an alert could be sent to a designated person.  The example I linked to earlier about the old lady who got lost in a park in the snow is a point in case – the tracker could have alerted someone as to her position.

All of the above is now very feasible using existing technology and in fact there is so much more that could be done using the latest technology to help Alzheimer’s patients and their carers. Besides tracking, reminders and alerts today’s wearables could also track various elements such as heart rate, glucose levels etc which would be particularly relevant for patients with diseases such as diabetes or pre-existing heart conditions for example.  A whole ecosphere could be built for patients and carers factoring in wearables, sensors within the home, and online support and management.

It is great to think, and see the possibilities that now exist to improve the outcomes and lives of patients with such tragic diseases such as Alzheimer’s but I question why it has taken the pharma industry so long to get involved – and in fact why even today they are not doing more in this space.  The opportunities are there – now it just needs to vision and willingness to be patient centric and accept innovation.

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