Wearables 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.
So 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.
That 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 :)
I have to admit that I have never been a huge fan of corporate rebranding. In theory a rebrand should go deeper than just the corporate logo and colours but should also include a change in direction and culture for a brand. Of course very often though the result is essentially a change in logo and colours and everything else stays the same. Some of the somewhat dubious reasons for a rebrand include:
- Change in management – essentially new management, pander to their egos and want to get rid of the brand that is associated with their predessors and bring in something new that is linked to them.
- Corporate “stumble” – some corporate disaster that leads to the desire to disassociate the company with its previous mistake or scandal
- Consultants advice – Consultants are brought in (possibly as a result of the above points) and advise that a total rebrand is a great idea
- Negative brand perception – Possibly due to point 2 or simply the result of poor marketing there is a perceived need to change the brand to be able to build a more positive image
- Market research – Hopefully a large market research study, which includes a number of types of research from broad surveys to social media listening to focus groups, identifies the need to change the brand. Sadly often the size of the market research study group is far too small or is based on a few focus groups which may not represent the bulk of users, thereby leading to misleading insights.
There are of course many other reasons for rebranding but I think the above captures some of the main ones. Whilst I may be a bit cynical this is because I rarely see rebrands that I actually think “Wow – this new branding speaks to me”, but rather I am often left thinking “erm … why?”. This is in fact one of the big issues with rebranding is that often consumers are left feeling perplexed and sometimes even angry that their beloved brand has been changed, especially if it is a strong, well established brand. There are plenty of examples of failures out there so it does surprise me to still see corporations doing dubious rebrands – and paying big bucks to do so too.
And so I come to a recent rebrand here in Switzerland. The striking, and well known Orange mobile phone brand changed the other week to a bland, dull and mundane Salt. I remember when Orange first launched asking why on earth a mobile phone company was named after a fruit but then I got the striking and strong colour element and the brand grew on me. Now it is a clearly established brand with a strong identity. Why change it? Well let’s go back up to our list and then pair that with the fact that Orange Switzerland was recently acquired by French billionaire entrepreneur Xavier Niel for 2.8 billion CHF- it becomes a bit clearer what could have driven the rebrand. There is also the fact that Orange Switzerland was having to pay 20,000CHF per year for the use of the name. This makes a bit more sense and I see some potentially sound reasoning for a rebrand, but …. why on earth choose Salt?!
Orange Switzerland has gone from a strong, vibrant, dyanamic and energetic brand to a dull, monotonous, everyday commodity brand. Gone is the colour and the energy and in comes the black and white and nondescript condiment. To top of this bizarre branding is the fact that it apparently cost $40 million CHF and a pretty shaky brand switch. As an Orange / Salt customer I had the joy of experiencing my network being down, the Orange / Salt shops shut for 3 full days while they rebranded the shops (3 days? Most of these stores are tiny!) and an overall poor customer experience. Even though I have now been bombarded with very dull rebranding adverts I am still at a loss as to what has happened and more importantly why. Gone is the old strong brand, in comes the dull weak brand. Other Orange / Salt customers I have spoken to here are equally flabbergasted, a few were also seriously inconvenienced with the network issues during the rebranding.
For me branding is really important and if you are going to rebrand at least make it strong, impactful and meaningful, and do not disrupt your customer’s experience during the process! As a paying customer I was so unhappy with this rebrand and the whole experience that I have now switched to Sunrise (that and they had more flexible contracts!). Perhaps if there had been some clear communication around why there was rebrand and what it actually stood for – including what corporate culture and ethos the new brand brings – I may have seen some sense in it all. As it stands all I see if $40million CHF of wasted money and the birth of seriously non-descript brand.
My first response when I have a customer complaint or question is to go online and direct a tweet to the responsible company with my issue. I have been doing this for quite a few years and it is great to start seeing some real improvement in customer service response via social media. A few years back I followed this approach when my Karen Millen shoes broke and ended up having to find the head of ecommerce’s personal email in order to get a response.
Fortunately since then I have had some amazingly rapid, and appropriate responses from customer services via Twitter, most notable from airline companies British Airways and American Airlines, who both rock their social media customer service. British Airways has always been fantastic at resolving my issues very promptly, professionally and in a friendly way. American Airlines impressed me with their near-time response when I tweeted to complain about the dreadful transatlantic airplane I had just boarded – with no individual video screens but only the shared cabin screens (can you believe they still fly planes like this on transatlantic flights?!!!). I tweeted to them just after boarding and before take-off I had gone through a small conversation, in which they apologied and assured me that new planes were being brought in – and that sadly they couldn’t upgrade me from there. Whilst they did not resolve my issue they were still extremely friendly and professional in how they handled my complaint – reducing my anger in the process.
So naturally when I got totally frustrated with my Swiss UBS credit cards not working online yet again I vented via Twitter. Being a big international, renowned bank I expected some sort of response via Twitter within 24 hours, especially as this is a big enough company to have a dedicated social media team. Being a bank I also presumed they would be wary of leaving negative comments unanswered given some of the anti-banking sentiment that is out there. However after a couple of days I gave up hoping for a response from them. They had simply ignored my tweet, or so I presumed, and I would need to start looking into finding another bank which had credit cards that actually worked online. Needless to say I was disappointed, both as a customer and a social media enthusiast.
However I had a very pleasant surprise today. I received a call from the UBS customer service team in response to my tweet! The call was very courteous, friendly and apologetic and it restored my faith in their overall customer service. During the call I gave the feedback that they need to response quicker via Twitter. They handled the issue so well via the call it is just such a shame that they dropped the ball via Twitter.
The key takeaway for UBS, and indeed any other organisation, is that Twitter is now a major channel for questions and feedback (both positive and negative) and consumers have certain expectations around corporate responsiveness. There is then the second point that responding via Twitter (where possible) is probably also considerably cheaper than via a call centre. In scenarios like this one, where a customer complains via Twitter, the best course of action is a simple “Thank you for your tweet, we will look into this and get back to you shortly”. This buys the company time to formulate an appropriate response (which may be communicated via Twitter or if appropriate via a call centre). At the same time it acknowledges the customer’s comment and shows that the company (and their social media team) is listening. It is a very simple but effective approach and one that any company on Twitter should really have implemented by now.
I do hope that UBS responds to this feedback and improves their customer response directly via Twitter as the guys working in their call centre and great and it is a shame to see them being let down by such a simple slip in communications.
Having recently joined the job seeker pool I was buoyed by a number of really positive articles talking about how this year is going to see an increase in recruitment as well as a skills gap and employees having more choice and higher negotiation powers. Awesome says I!
There is then fact that I am an expert in social media in pharma, an area that is also growing and where there is a blatant need for more talent. Many pharma companies still have no social media presence, strategy or even dedicated headcount and very few are approaching this main stream communication channel as strategically or as seriously as they should be. This is after all now one of the main communication channels for a large chunk of healthcare stakeholders, from doctors through to patients. This is where people turn to for health information and news and yet many pharma companies are still conspicuously absent from this space.
I was therefore very positive when I left ZS that I would soon be picking from an array of opportunities. However things are not always as they seem! Firstly given many pharma company’s lack of strategic approach to using this channel most of the jobs are at a very junior level – more focused on content management rather than being a strategic leader, relationship builder or internal change manager. Secondly the very fact that many pharma still have this unfounded fear of social media they are also not looking to employ in this area.
This brings me onto my second road block – being “too experienced”. Given the wealth, depth and uniqueness of my experience I am often too skilled, or more to the point too expensive, for the roles available. People always ask what my current salary is and then tend to go very silent and end the conversation. No matter how much I explain that passion for my work and work life balance are more important than salary it seems to be a discussion closer (before the discussion has even begun). That said I recently had a discussion for what sounded like a perfect role for me … until they mentioned the salary which was half my current salary, and less than I was earning over 5 years ago – I am flexible but not going to sell my experience short either.
Things are not always what they seem then. This also goes for other areas in life and in fact is something I have also been mulling over recently. The other day I was walking down Bahnhoffstrasse here in Zurich and saw a very anorexic looking woman on the street. The same day I saw some photos online of some obese women. Prior to my own diagnosis with a thyroid condition I would always automatically have thought the anorexic women “needed to see someone about her mental problems” or that the obese person “should lay off the hamburgers”. However things are not always what they seem. I now appreciate that either of those groups could in fact be dealing with health issues which are having a significant impact on their weight. As a result of my thyroid I put on close to 15kg – and I was a physically active, salad eating slim woman.
I also now know all too well that that friendly, smiling person may in fact be feeling desperately ill, depressed and miserable. Many autoimmune patients, for example, struggle daily with the effects of their disease but put on a brave, happy face for the outside world. They do not want to burden people with their misery or they feel people will not understand and they will lose their friends and will feel even more alone.
So I always remember now that things are not always as they seem. That dream job may take a bit longer to find, no matter how great the market or your skills are. That seemingly happy, or weight-challenged person may in fact be suffering from a horrible disease and may be feeling desperately alone, miserable and in pain. This is why I try these days not to make assumptions and I always try to smile at people. I may be going through a bad day but that person may be going through far worse. My smile may not mean much but I hope it helps make things seem a little bit sunnier to that person.
I have recently started to look for new opportunities and one area I am extremely interested in working in is patient advocacy, especially within a pharma company. As such I have now come across a few job postings and a couple of things stood out as being glaringly missing from most job specs. I extended my search globally to verify that this was not just a European issue but the more I looked the more these glaring omissions became obvious.
The first and foremost is that to date I have not seen a single job spec for patient advocacy roles that actually mention that it would be an additional benefit if you actually are a patient. In fact many of them do not really even mention the patients and being able empathise with patients, and yet to me this seems like a critical element to working in patient advocacy. How can you possibly work in this area without having a good understanding of the patients themselves, and being able to understand not only the rational issues they face but also all the emotional ones too?
Whilst I would not suggest that being a patient (either in a specific TA or at least in some form of relevant disease area, for example being a chronic disease patient) should be mandatory but it should surely be seen a huge added benefit? I previously wrote about Abbvie’s HIV patient advocate who is himself an HIV patient – and how inspiring, and successful, he is. Boehringer also has in the past hired an actual patient to be patient advocate too. Both of these pharma employees bring a core element to their role – they really can empathise with patients and they truly understand all the issues patients go through.
Whilst it may be hard to find a patient in a specific disease area for the role, patients with similar diseases or that go through similar experiences can also bring a greater level of feeling to the role. As a Hashimoto’s patient, for example, I myself know from first hand experience what it is like to have an unusual disease (it depends on which country I am in as to whether I classify as a rare disease patient). I personally understand the relief of finally getting a diagnosis when you know something is wrong but doctors have ignored your symptoms, e.g. being diagnosed with depression with no questions asked and no blood test being taken (I had a thyroid condition and depression was a symptom). I also know the frustration of being dismissed by doctors because on paper I am “fine” – when I clearly am far from being fine.
The other thing that being being a Hashimoto’s patients brings me is empathy for patients with chronic and autoimmune diseases. I know what it is like to have to take pills for the rest of my life. I know what it is like to make lifestyle changes and live in fear of having a set back or getting ill again. I know what it is like to battle fatigue on a regular basis, and having to educate friends, family and employers about what autoimmune fatigue really means (“yes i really do need that much sleep” “No I won’t feel better after a few vodka red bulls” etc.).
As an autoimmune patient I have also learnt the critical role that the internet and social media plays in finding the relevant information and support for your disease, that often your doctors don’t know, and the value of online patient support. Without the internet I estimate it would have taken an additional couple of years to get my Hashimoto’s diagnosis. However many of the job specs I looked at did not even mention social media or the internet as a key skill! Today the majority of patients get their information online, especially if they have a rare or chronic disease. How then can having an indepth understanding of this area not be a core skill? Just because you have experience in dealing with governments does not mean you also have the skills required to advocate for and provide support for patients. You need to truly understand their emotions, their issues and their key communications channels. That to me should be a critical element to a patient advocacy role.
Perhaps though the final element is the importance in having that passion to help patients, and being a patient brings added depths to that passion. I am a patient and one of the reasons I am so passionate about social media is because I am passionate about the incredible impact it has on patients’ lives. I am an autoimmune patient and I am passionate about educating others about this often ignored disease area. I am a patient with an uncommon/rare disease and I am passionate about helping other patients break down barriers to better care and finding better ways to cope such life-changing conditions.
If you are a patient advocate but not a patient can you bring that same passion and empathy to your role I wonder? Pharma when are you going to truly start putting patients at the centre, starting with your patient advocacy roles?
As many of you will know I recently decided to part ways with ZS in order to find a role where I could use of my digital and social media expertise. I have spent years building up the expertise and I am extremely passionate about how digital, and in particular social media, can have an impact in healthcare. Whilst I did some very interesting projects at ZS, and certainly helped many teams with my expertise, there was just not enough projects that really allowed to use and grow my expertise. And so we parted ways and I have started applying for jobs and looking for relevant contract and consulting opportunities.
When I first joined the job market the process of applying for job more often than not involved sending your CV to the recruiter via email. Gradually more and more companies started using online portals, to the extent that now some recruiters will respond to an email with a CV with a link to the portal and ask the applicant to apply online. In theory this is a much better, and more equitable solution. Everyone has equal opportunity to apply and the company slowly builds a database of CVs. The problem is that most of these portals require you to create an account in order to submit your CV.
I don’t know about you but I am up to my eyeballs in log-ins and usernames and passwords. Some portals want you to use your email, others want you to create a username, and they all want a password. I used to try to have a special job portal username and log-in but invariably I ended up forgetting it so when I went back to the said job portal years later it would inform me that I already had an account and would send me my new password – but to an old email address. Then there is the issue of password. We are always told not to use the same password across accounts but I’m sorry I just always forget them so I have resorted to just a few that I use. This is especially true for something I will not use regularly as there is no way I would remember a random password for a random portal.
Today I have been particularly frustrated by one company’s job portal (I won’t name names but it is a medium sized pharma). I logged in, using my now standard username and my standard password. I started to complete the application form but as my laptop is currently being a bit temperamental (it must be the Spring air) I decided to save my progress. This of course then kicked me out and I had to log-in again (why I have no idea – seems like a silly thing to me). But low and behold – as I tried to log in, using the username and password that I used minutes before to create the account, the dratted thing told me that I had got it wrong. Now having only just created the account and having used my standard username and password I knew I had not got it wrong. I nonetheless tried various alternative password options but to no avail. I finally clicked the “forgot password” link and about 5 minutes later (yes minutes not seconds) I received a temporary password and tried again. This time I was told I had been locked out. Fantastic.
In the meantime I received a “Welcome” email to tell me that my account had been set up. From this I presumed therefore that the system they use does not create the account automatically but takes several minutes to do this – which in this day and age I had not expected, but this probably explained why it did not recognise me – the system was painfully slow.
I clicked again on the “forgotten password” link and this time it only took a few seconds for the new password to be sent to me. I am now extremely happy to report that I have regained access to my application. If I should get this role one of the first things I think I will do is have a chat to HR about their system – job applications is a two way thing and if a company makes it too hard or too painful then highly skilled people may simply give up. We often talk about all the shiny new digital tools, like the latest wearable tech, but we should always also remember the importance of getting the basics right. Your digital assets, including your job portals, are often the key place that people form an opinion of your company – do not make them angry or disengaged by not getting the basics right.
Needless to say after Day 2 Sunday was a bit of a wash out! I did have some interesting conversation with some German entrepreneurs at the German house but that was about it. Both Monday and Tuesday were however more eventful. For starters there was a lovely lunch with the #hcsmeu gang, by now also including Gary Monk, which really highlighted for me one of the great things about SXSW – the opportunity to hang out with some really awesome people.
I also went to a couple of very cool sessions including one on Augmented Reality, a technology that once had a very “shiny” factor but never seemed to have really taken off. I have always been a bit disappointed by this as beyond the shiny factor I always saw AR as a format with high potential. Well it turns out AR is apparently finally coming into its own. The session demonstrated some fun examples but also a very pragmatic and useful example from Argos, who are using AR to enhance and keep their paper copy catalogs up to date with the latest offers. This was a great example of mixing “cool” (you can “try” on watches via AR and the catalogue) and functional (hovering over items you can see if there are any current latest offers). I loved it! I also found the statement that AR is going to become the new search intriguing. Whether it will or not remains to be seen. Nearly as cool as the session though was the pedicab ride back to the main convention area with Wonder Woman! I loved this other part of SXSW – all the interesting and crazy things going on in the streets, like the dressed up pedicab drivers or the squirrels promoting a book app. Those squirrels were cool.
Another session I just had to go to was another cat-related one called “CATastrophe: Good, Bad and Ugly of internet cats” with Jackson Galaxy and PetSmart, and which was all about what we as cat owners and lovers can do to help increase the number of cats getting adopted from shelters. It was actually a fantastic session as unlike all the others I had been to this one was more interactive and involved more of a dialogue around some of the key topics. Petsmart shared some fascinating research into pet ownership and cat owners, and the perception people have of them, and people in the room shared their perspectives and stories. I did not come away with the ideas for fundraising for my own charity that I had hoped for but I still found the session well worth going to.
The other thing I ended up doing on Monday and Tuesday was to have a look at the exhibition rooms. I went round the Med Tech one but was left uninspired. While the likes of Withings were there they were not showcasing what I considered to be some of their more interesting products. A panel on women leaders in digital was also hard to follow as it took place in the very noisy main room. Jackie and I did however get asked to do an interview by a reporter for NBC around wearables and I am delighted to say that both of us made it onto US national TV! Cool!
Sadly no other national news channels wanted to interview me from the main exhibition hall but there I saw yet more very cool stuff. There were the virtual reality glasses that respond to blinks that offer an amazing option for patients with Locked-in Syndrome and the robotic arms that move based on remote motions. I was naturally also blown away by the company that lets you design your own shoes – this is potentially some very dangerous technology! I also ended up doing some shopping here, starting with a WonderWoof bow which I will try to use on one of the Romanian shelter dogs to raise awareness of their plight. I also bought a mega cool phone charger that looks like a Channel compact and a Fuji Instax printer that lets you print mini polaroid photos from your phone – which was very useful at the SXSW closing party!
And talking of parties this was undoubtedly another great part to SXSW. Each evening there were events on and it was a great way to meet new people and talk to people doing all sort of interesting things, like the German entrepreneur or my new Austin friend. I also got to attend a very entertaining comedy session with some famous US comedian (whose name currently escapes me) – not something I would normally have attended but it was hilarious. I also met people during the day over lunch and drinks, including a group of Swiss guys from Zurich, one of whom had an even worse return flight back that mine – he was flying Delta and having to change 3 times to get back to Zurich. And then of course there were more squirrels and other characters – like Hello Kitty!
The grand finale was of course the closing party. I stood in queue for over 2 hours to get into the event – by this time alone as most of the #hcsmeu gang had gone home. Naturally I met some great, fun people in the queue, including a South African chap who had recognised me from the Jackson Galaxy session and had joined me in the queue (calling me “cat lady” as he did so). Having queued so long meant we were amongst the first to get into the venue and got front row positions by the stage which was awesome – one of the main acts was Ludacris and I am sure I would never have got so close in a normal concert. The atmosphere did not disappoint and was electric.
In fact the whole time at SXSW the atmosphere had had something electric and inspirational. There was so much innovation and creativity being displayed it was almost palpable in the air. The conversations I had and the things I saw were all incredibly energising and I felt more alive than I had for ages. There was no sign of my Hashimoto’s fatigue and there was no thought or worry – just pure enjoyment, inspirations and buzz. I did not want this trip to end. I did not want this experience to end. I dreaded going back to work where I knew there was little hope of getting to work much on anything as cutting edge and digitally creative as the things I had seen. I missed working everyday in this field. I missed spending everyday working in social media and technological innovation.
SXSW turned out to be the most amazing trip I have made in a long time. I had gotten my ROI back by day two but more importantly I had also reached an important decision. I had realised that my career at ZS has been taking me away from what I love and that my time there was over. I needed to get back to doing what I truly love and what I have spent years specialising in. It was time I returned to working in digital and social media in healthcare. This is where I have shown thought leadership and where I can make a real impact, both for myself but also on the lives of patients. This is my passion and this is where I get my energy from. And so when I returned home ZS and I agreed to split amicably, like a couple that realises that we have grown apart and want different things in life. I learnt so much at my time there but I longed to learn even more and in an area I love. Thanks to SXSW I have now opened another, exciting chapter in my book – I do not know what it holds (I am open to offers and suggestions!) but I am very happy and very excited and I know that in this next chapter I will accomplish something great.
After Day 1, Day 2 of SXSW started as planned. I got my shuttle in extra early and wondered around Austin for a little before heading to my first session #brainhack. This was a session led by two professors from DARPA. Immediately we were all engaged. Our first speaker was not only a highly interesting professor he was also hilarious. My favourite quote from him was “I am owned by the government. The only difference between me and a mailbox is that dogs don’t pee on me”. This was going to be a great session. Indeed it was as he proceeded to introduce the first FDA approved prosthetic limb, which the wearer moved using movement. This was amazing stuff. But then he took it one step further. He then introduced the brain chip and showed us test done with a couple of paraplegics. In the first one a young man, with no movement below the neck was able to move a robotic arm using his thoughts alone. The arm was not attached to him but through thinking he was able to move the arm up and down, left and right. Off script his girlfriend then said she would love to shake his arm, even though it was not his she still felt like this was the first time they could physicially really interact. He shook her hand. Stunned silence. In a room packed with standing-room only where there is always background noise you could have heard a pin drop. This was truly the most amazing, emotional technological thing I have seen. This made coming to SXSW worth it. I left the room full of awe and inspiration. There is so much more out there.
My next session also left me walking away in awe. Here were more professors showcaseing their work – this time around the impact of gaming on the brain. Whereas I had always poo-pooed war and action games as pointless it turns out they actually have a far more positive impact on the brain than other games. In fact they demonstrated the positive cognitive improvements that could result from gaming, to the extent that some of these games are now in clinical trials with large pharma companies like Pfizer and Shire. This was the new frontier of clinical trials – no pharmaceutical products but technology making the changes required for positive outcomes. Again I was blown away and totally inspired.
Full of inspiration I headed to the Fast Company Grill to meet up with Jackie and Veronica and another #hcsmeu member @ideagoras who was also in town. I last saw Angel in Madrid end of last year so it was fantastic to see him again so soon. During the very delicious, and free, BarBQ lunch we listened to two inspirational female entrepreneurs, before we each headed off out to our next sessions.
Next up I went to a couple of sessions I just had to attend – meeting Tuna the dog and Lil Bub the cat. In case you don’t know them they are both internet sensations and mega cool. As my cat has his own facebook page and I myself volunteer in animal rescue I had to see these two rescues that have managed to carve a name for themselves online. Both were real superstars and I felt honoured to meet them and their parents. Lil Bub was also gracious enough to support an online campaign going on at the moment to let Romania know that the world is watching – a new slaughter of strays (via bleach injection and bludgeoning to death) is due to start this Saturday and I hope that this little photo will in its own way help make a difference.
After Lil Bub I then dashed back to the hotel where I had to present at ACC via skype on the power of social media for patients. Here technology failed me – rather distressing giving that I was at a technology event! I ended up having to sit in a corner holding my tablet in order to get enough reception to skpe – which totally blew me and I apologise for those at ACC who watched. It was not the smooth presentation I had wanted but it was a very passionate one and I hope that made up for it.
After all this awesomeness I had to meet the ladies for a drink so we all headed to the Fast Company Food & Grill for some free food and vodka. I was on a total high so when the light-weight ladies decided to call it a night and go home at 8pm I stayed on and met new people, having some intellectual conversations, and some less so. As the evening carried on I then got talking to two local ladies who I totally clicked with. When the Grill closed I then moved off with them to the Kettle One party, and when this finished onto some local bars where we met some lovely local guys. At this point everything was closed so we proceeded to go to one of the guys apartment and drink some famous moonshine. Awesome stuff! Finally at 8am I made it to sleep. I am nearly 40 years old and I would never ever have even remotely guessed I would have had the energy to stay awake that long but the sessions I saw inspired me to much I was on a total high. I had definitely got my SXSW ROI. I had seen mindblowing, life-changing technology, met internet sensations, been out on the town with locals and partied like a 22 year old. My money was well spent.
A few years back I heard about South by SouthWest for the time. I did not really have any desire to go – it did not seem relevant to a health digierati like myself. Rather I thought it was more for film and music buffs and total techy geeks. I did not think there would be anything noteworthy for a marketer or a strategist, certainly not one specialised in healthcare.
Then last year my colleague Jackie Cuyvers told me what it was really like. She told me that this is where ground breaking technology gets showcased and where you can see the hottest tech innovation, including in healthcare. She told me also that it was one huge party and a massive networking opportunity. She also convinced me that this was THE event for someone like me to go – this would be one of the few events were I would really learn something, unlike the standard pharma digital conferences which tend to be a showcase of case studies rather than truly innovative thinking. I was convinced. I had to go – it made total business sense. I could bring those learnings and innovative ideas back to the company and back to our clients. It seemed so obvious that I asked the company if I could go.
No. That was the point-blank, no-discussion response I got. No. Well that would just not do! Now that I was all excited and convinced that this was indeed the event for me to attend I had to go. And I was going to go – even if it meant paying my own way and taking holiday. And this is what I did. Had I acted rashly, would this expensive excursion pay off? I was even having to fly with the dreadful American Airlines to get there and it wasn’t even a direct flight. Was the pain of flying AA really going to be worth it?
The answer is a loud, resounding YES! OMG YES! SXSW2015 turned out to be the most mind-blowingly amazing event. It was worth every penny. It was worth the AA flight with no personal video player (yes – can you believe that in this day and age there are still transatlantic flights where you have to watch the main screen in the cabin and where they do not show the latest films?!). SXSW2015 blew all my expectations.
Day one started with a longer than expected queue to sign up, followed by the first selfie of the event with Jackie and Google’s @happydezzie. I then went to a couple of interesting sessions including one on the ROI of Word Of Mouth (WOM) which presented some interesting findings on the impact WOM and social media on marketing, confirming the role social media plays but I had hoped it would go a little deeper than it did. Interesting but not yet mindblowing.
The next session however provided more of a “wow” factor as I heard about how technology and innovation are helping in the fight against Ebola. Besides some great new digital technology such as wearable, bluetooth enabled patch to track patients, there was also an amazing showcase of partnership and open innovation in the form of the new safety suits for healthcare workers fighting infectious diseases like Ebola. It was humbling to see the new prototype and hear just how unpleasant the current suits are for healthcare workers and it was fantastic to be present at the unveiling of the new suit.
The highlight of the day however was finally getting to meet @veronicabotet who I had met over Twitter via #hcsmeu years ago. It was fantastic to finally get to meet her in person and I was so happy when she was able to join Jackie and I (yes Jackie had also paid to come herself having faced the same solid NO from ZS) for dinner. We had a lovely evening, during which I learnt some new American terminology and ate some amazing Brazilian steak. I headed back to the hotel happy wondering what Day 2 would bring.
Today is #Rarediseaseday. This is a day when patients, their carers, HCPs, governments, NGOs and industry unite in raising awareness around rare diseases. I am presuming that people reading this post know what a rare disease is but if not Eurodis provides information around this.
#Rarediseaseday is in my opinion a very important day. It is a day that not only unites all the various parties involved in healthcare but also raises awareness around rare diseases and the plight of patients and their carers. Rare diseases are often devastating and can be all consuming not only for the patient but their friends and families. Many rare disease patients are children and many rare diseases have no cure or treatment.
The very nature of rare diseases is that they are extremely uncommon and subsequently often very hard to diagnose. The old adage “When you hear hoofbeats, think of horses not zebras!” means that first diagnosis will generally be for more common diseases and it is only as these start getting ruled out that diagnosis starts moving towards the rare disease spectrum. When my mother became ill with an autoimmune disease called Churg Strauss syndrome she went through months of ill health and pain, and multiple false diagnosis, before ending up in an ambulance and hospital where it then took 8 consultants to make the diagnosis. Looking back she had all the text book symptoms but none of her doctors managed to connect the dots and consider it may have been an autoimmune or rare disease.
Shire put together a couple of great infographics around diagnosis issues as part of their rare disease impact report The infographics interestingly show quite a disparity between the UK and the US in terms of diagnosis time but also show commonalities in the emotions that patients and carers go through regardless of location.
Looking into patient and carer blogs around rare diseases there is often this common theme around time to diagnosis and all the problems associated to this, including things like being dismissed by HCPs for being a hypocondriac or their opinions and input not being taken seriously. It can be extremely distressing for a patient when a doctor dismisses them and their input, as I personally found out in my journey to my Hashimoto’s diagnosis. It can also potentially have negative physical results as written about by Michael Weiss, aka @hospitalpatient, in his story around his battle with Chron’s Disease where doctors at the Mayo Clinic refused to listen to his input around his own body.
In both my and Michael’s cases we refused to accept the doctor’s verdict. We are both empowered and educated patients and we pro-actively sought answers that fitted with our experiences. At the end of the day no one knows a patients’ body and illness like that patient. Traditionally the patriarchal nature of medicine meant that patients had very little say in their own healthcare but this has changed today. Today, in large part thanks to the internet and social media, patients are more empowered than ever to stand up and take control of their own health, and if they are not satisfied with the answers they get to continue looking. In the case of rare disease patients this can really make the difference between life and death and have a huge impact on quality of life.
What we see today thanks to technology is patients coming together around common health issues, finding a voice where they previously had none, finding power and strength in numbers where previously they stood alone and finding hope where previously none existed.
#Rarediseaseday is part of that movement and helps amplify their voice and raise awareness around their issues. It is also a testament to their strength and tenacity in not giving up in the face of apparently insurmountable odds. Through #Rarediseaseday we celebrate the incredible courage of patients and their carers, and each and every patient and carer in the world can take inspiration from this amazing group and empower themselves to take control of their own health.