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.
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.
A few weeks ago I presented at the SMI #pharmasocialmedia conference around the power of social media. Having uploaded my presentation to slideshare and done an interview about the subject I thought it was about time I actually write a blog post about what I spoke about, especially as it is an area that I am extremely passionate about.
So what exactly is the power of social media in healthcare? When I ask people this question I get many different answers, for example big data and access to insights via listening or extended reach of messages. A few people mention the ability to engage with key stakeholders and build relationships. These are all valid points but to me the power of social media is why more than this. To me social media is a channel that can enhance, change and even rescue lives.
I have had a few people look a tad skeptical when I say this but a quick Google search does substantiate my claim that it saves lives. As to enhancing lives there I can speak about my own experience as a Hashimoto’s patient and how social media and online resources helped me self-diagnose my condition and find out information about my disease (e.g. to go gluten-free) that has had a huge impact on the quality of my life. I have since met many other autoimmune patients with similar tales to tell. With Autoimmune diseases you often need to be make lifestyle changes, and accept that fatigue will be part of your life for the rest of your life. By finding other patients online you can get useful information on how to cope with these facts.
This in turn is what gives social media some of its power – the access to support and information that can support patients but can also speed up diagnosis. This latter point becomes extremely powerful when you are a patient with a rare or difficult to diagnose disease. On average a patient with a rare disease has to wait 5 years (in the UK, in the US it is 7 years) before receiving a diagnosis. This is a huge waste of healthcare resources as that patient gets bounced from doctor to doctor and put on various non-effective medication. The emotional impact of this should also not be underestimated. When I received my diagnosis (both the initial thyroid disease and then later the Hashimoto’s diagnosis) it was a huge relief. My mother had the same thing when she finally received her Churg-straus diagnosis. It may sounds strange but that’s the reality when you’ve been struggling to find out what is wrong with you.
In my case diagnosis meant that I could make lifestyle changes but medication wise I am stuck with a generic thyroxine replacement. Other patients however find themselves no better off post diagnosis as there is no treatment or treatment is too expensive. Here again social media can have a real impact. Patients can use social media to raise awareness and funding to help pay for treatment but also to fund trials. There are some lovely examples of patients, or parents of patients, grouping together with other families and friends to identify trial opportunities, researchers prepared to help and funds to pay for this help. This is a domain that traditionally sits with the pharma industry but this does not hold patients back and has resulted in some pharma, such as Janssen, re-assessing research opportunities based on this patient push. Patients have also played a role in lobbying governments to reverse reimbursement and approval decisions, for example MS patients last year who lobbied the FDA to reverse their decision not to approve Lemtrada – the FDA in the end agreed and approved the product.
For healthcare professionals social media can also have a great impact. Take a doctor who has just had a patient walk in for the umpteenth time with undiagnosed symptoms – they may have an idea of what it could be but need to validate this with a colleague or expert. They can turn to social media, for example through a network like doctors.net, to ask for advice from other physicians. This again can help speed up diagnosis. Doctors also often complain of not having enough time to explain disease aspects clearly to patients. Again social media can help but providing doctors with an online resource to direct patients too, for example a relevant patient association or Facebook group.
All of the above is also beneficial to pharma. Social media provides pharma a great way to gather insights around patients needs and diagnosis roadblocks, as well as build relationships and help relevant stakeholders network to deliver solutions. Whilst pharma will never own this channel, or its discussions, they can support it and help drive some of that power to deliver life changing results to patients. At the end of the day we are all here to help improve and save patients lives so anything that does this should be welcomed, even if it is in the guise of a “scary” channel like social media. And let us not forget that patients are already engaging and taking control of their health – they expect the other stakeholders in their healthcare to do the same.
As anyone who follows me on Twitter may have noticed I was extremely active these last few days tweeting from the SMI #pharmasocialmedia and the Digital #pharmaconf conferences.
I had the pleasure of chairing day one and presenting at the SMI conference, as well as organising drinks for fabulous Jaclyn Fonteyne and @phamaguy to celebrate @Boehringer’s win of this year’s social media Hawaiian shirt. It was a smaller event but I found this also meant there was a higher level of discussion and interaction, including over drinks of course! @lionelreichardt put together a great storify of the event which is worth having a look. The Digital Pharma conference on the other hand had a slightly broader perspective and a larger number of participants. Both were extremely interesting and covered a range of topics but similar themes came through from both.
This for me looks to be this year’s buzzword. It came up multiple times at both conferences. Co-creation is the concept of partnering with your stakeholders, be they physicians, patients or medical students, in order to jointly produce a mutually valued outcome. Doing this ensures that the offering resonates with your stakeholders by meeting their needs and offering them value, because it is based on input from them. The other aspect of co-creation is that it creates greater buy-in from stakeholders because they are part of the creation and development process. There were some great examples presented on this including a case study presented by Jenny Cowderoy, where she explained the how Doctors.net.uk partnered with medical students to brainstorm and help with the development of their offering for medical students. The end result was some very innovative ideas but also a group of 20 highly engaged medical students who volunteered to help build and promote the service. Another, very touching, example of this came from Birgit Bauer, a MS patient and journalist, who now blogs for Novartis’s Living Like You. She made the fantastic point that patients are experts in their own disease, they use the same language as other patients, and tell an authentic story. They also tend to already be networked and have established presences online. From pharma’s perspective they offer a relatively straightforward way to bring in the doctor or patient POV and help build trust, engagement and extend the reach of content. Indeed Sinem Erenturk presented a great pharma case study around the success of an HCP community built by Boehringer than was co-created with doctors and which uses content from doctors and has been a huge success.
The above points are actually part of the broader push to be more customer centric but I have placed this point second and this has been a buzzword for some time. Most big pharma now talk about being patient centric and some think that they are already customer centric around their physicians. Of course many do not consider patients as customers and there is a whole debate to be had around this. The reality though is that pharma is still brand driven, not customer driven. There were some fantastic presentations around the importance of customer centricity, and the need for organisational and behavioural change in pharma to start being customer driven. MSD’s Thibaud Guymard presented a fantastic example of customer centricity, and the success that this approach can bring. Last year Thibaud presented at SMI around the launch of Univadis’ Comuniti, a physician community in France. Comuniti was developed based on insights from doctors and their needs, and was co-created with doctors (that buzz word again). The result has been very impressive, especially in a country where doctors are less active on social media – since launch last year Comuniti now has nearly 44,000 users.
GSK’s Kai Gait made some fantastic points about the importance of being customer centric but also flagging that much of what we talk about is just good marketing. This resonated with me and I remember when I did my masters in Marketing many, many years ago we talked about the importance of understanding your customers and building your marketing based on their needs. This is basic marketing and yet in pharma we talk about this sometimes as if it is a new thing!
Another great example of customer centricity was presented by Christian Kranich from Abbvie. I have to admit that this was probably one of my favourite presentations from both events thanks not only to the great points and examples Christian talked about but also due to his wonderful humour and humanity in presenting. He started his presentation by introducing himself as a gay HIV patient and activist, who used to see pharma as the enemy but now works for Abbvie as a patient relations manager. This was so refreshing to see a pharma employee speaking so openly, and with such wonderful humour, about their disease. By hiring a patient, like Christian, Abbvie has demonstrated how serious they are about being patient centric – I just wish more pharma followed this lead.
This was another topic that cropped up multiple times, but again as Kai Gait flagged, is part of basic marketing and it still amazes me how badly this is sometimes done. There was much discussion, and muttering, around the need to demonstrate ROI, with quite a few people pointing out the importance of being able to demonstrate value to senior management – and in order to do this you need to be clear around what you will measure, how you will measure but also how you will then report back on those measurements. Boehringer made a good point too though around understanding what you are measuring and that often ROI is not the appropriate thing to measure, but rather ROE (Return On Engagement). Indeed from a compliance point of view trying to link ROI with a public channel like Twitter can get you into some deep water. Boehringer was very clear around what their goals were for their tweet chats and also what the measures of success would be. I particularly liked their inclusion of not only the impact on Boehringer but also on the KOL they worked with for tweet chats – again another demonstration of customer centricity. And of course measuring today is so much easier as a result of technology and the access to big data, although Sinem Erenturk made a great point that it is not the big data that is important but rather the insights you get from that data.
Perhaps my final take-away is that at the end of the day social media is still all about cats! Actually this relates to GE Healthcare’s Dimithri Wignarajah who had a fantastic presentation which to my delight was very cat image heavy. The point being though that content is still king in the digital world and therefore focusing on content that provides value to customers and is engaging is extremely important. If that content with cats in is what is going to have the most impact then use cats.
In GE’s case it is actually less about cats and more about using visual content as part of a strategic move to become a more visual content. GE has approached what many would think of as boring content, machines, in an innovative way and turned their content into visually engaging content.
Another very interesting point was made by Gedeon Richter’s Haidler Alleg about the balance of content versus technology. He gave the example that previously their focus was 80% on technology and 20% on content, a balance that sounds very familiar to me, and he has turned that around to have an 80% focus on content and 20% focus on technology. To me this is spot on as technology is an enabler but it is content that drives impact and engagement. This flags up another relevant point that actually it is not which channel you use but how you use it. The key thing is to deliver the right content to the right customer via the right channel and at the right time. If you get the channel right but the content wrong then you have wasted you budget.
There were many other great points and presentations at both conferences but these four points stuck out as they were the ones that were mentioned repeatedly at both conferences – and I believe all four are very important. I hope next year though that some of these points will no longer be discussed – it is high time we understand that in today’s world being brand centric no longer works and that you need to start using the data at your disposal.
Of course I think it will always be fine to talk about cats … after all social media is and I am sure will always be all about cats! On that note I leave you with a photo of my own cat :)
I popped back to Suffolk, in the UK, this weekend to visit my parents. I was very interested to hear that my mother would be wearing a device to monitor her heart for 24 hours. This is part of a barrage of tests to check her health and try to help diagnose various ailments she has. Many years ago she was diagnosed with Churg-Strauss syndrome so she is no stranger to being bombarded by tests to diagnose a hard to diagnose disease.
What interested me in this device, besides how it would help my mother, was to see how the NHS was making use of monitoring devices and technology. Now I am a huge fan of the NHS, but I am aware that this massive organisation has struggled to join the digital world. How would they go about monitoring a patient remotely I wondered.
I should probably not have been surprised at what I discovered as I found out about my mother’s heart monitor. Now while some devices have taken the crazy concept of user experience and usability on board – others clearly have not. This was the case with my mother’s monitor. What she had was a device about 2/3 the size of an iPhone attached to her chest with a very long cable and monitors stuck to her chest. That was it. She was left to her own devices as to where she would carry that device. The obvious place of course is a shirt pocket. What % of ladies wear (including night wear) do you suppose has a pocket in the chest area? My mother was fortunate as she had appropriate clothing – I would be less fortunate as I believe the only thing I could wear would be a borrowed shirt (and being single I could not turn to my boyfriend’s wardrobe for support) or inside my bra (no comment on that). Minor issue.
Apparently at night the cable is long enough so that you can place the device under your pillow without the need for a pocket – easy! Oh except there is also a reasonable chance that if you have health issues you are not sleeping well and will toss and turn and consequently get totally entangled in the cable, increasing your night time stress levels. Minor issue.
After her twenty four hours were up the doctor had informed her to take the battery out. Again – easy! Right? Sadly not. My mother tried to do as her doctor had showed her, removing the battery with a card. She had no luck, neither did my aged father, so as always in matters technology she turned to the younger generation – me. I am no technophobe nor am I a total idiot but for the life of me I could not work out how to remove the said battery. By this time my mother was in some distress as she had been specifically told to remove the battery after her 24 hours and was concerned that by not doing so she would invalidate the whole experience and have to re-do it (I will not repeat her thoughts on that!). But hey ho – minor issue!
At the table I had also noticed her jotting things done on a piece of paper. Was this a shopping list? Perhaps a to do list? No – it was of course her hourly diary taking to document her actions during the 24 hours. A piece of paper. Fabulous. What a wonderfully efficient tool this was – she would have to write it all up, remember to take it with her to the doctors, where they doctors would then need to type it all up and also store the said piece of paper. What a total waste of NHS resources … but minor issue right?
What struck me about all these “minor issues” is the waste of time, resources and total lack of patient centricity in the whole process. Why could the device maker not simply provide a device that came with a practical way of carrying it around for 24 hours? Why was it not linked to an app which the patient would also use as a diary with all the results being sent to the doctor, at the end (or indeed during) the 24 hours? With today’s technology this is not a crazy suggestion.
Of course the big issue here is budget. The NHS does not have the budget to upgrade the devices they purchased (I hope) some time ago or to develop the accompanying app diary for this device. I would see this as being a great value add from the part of the device manufacturer but they probably have no motivation for this, or indeed totally lack the creative, user-centric thinking this would require.
The other issue that this raises is of course security and IT systems. Ensuring the app is secure enough to comply with regulatory requirements and that it interacts with the NHS systems is of course another whole boardgame. Paper is still considered far more secure (I would sometimes question this – but that is something for another discussion).
Surely though as the NHS looks for cost cutting and efficiency measures examples like this should raise a flag. How many other patients, for other conditions or with other monitors, are having to document a daily diary? Why not develop a single NHS app for this which could be used across multiple situations? Surely the sheer reduction in excess paper work and saving in time would make it a more than viable investment? Indeed perhaps this app already exists – in which case the question is why is it not being used? I could go on and on along this line of thinking (and please feel free to continue this and answer these questions in the comments) but for now I have said my piece.
I have flagged a single example of a procedure not making use of technology, not being patient-centric and generating unnecessary costs for the NHS. As far as my mother is concerned though she has done her bit, has vented and muttered about this, and has now returned to her normal life, without having to fret about long cables, pockets or how to remove ****** batteries.
I have been using Tripadvisor for years to research holiday destinations, hotels and restaurants. I will often start by using a tool such as Lastminute or Booking.com to find a holiday or hotel and then I will check the options using TripAdvisor. When checking I tend to only look at recent reviews as I know from experience how much hotels and restaurants can change with time. If a location gets a bad review I will move on to find a different location. If my searched location gets great reviews then I tend to book.
This was the same process I went through recently to book my trip to the Maldives. I had used Lastminute.ch to identify potential holiday destinations, and then having narrowed it down to the Maldives (where I had had a fantastic holiday back in 2007) I then went to TripAdvisor to select the resort to go to. The island I opted for was called Biyadhoo and it was touted as being a simple and basic resort on an island with a fantastic house reef. Reviews commented on how great the snorkeling and diving was and what a lovely island it was. A few also posted photos of the resident cats. It was this combination of a great reef as well as resident cats that swung it for me and I booked myself a week’s holiday on Biyadhoo.
At first glance the island looked like paradise, as so many tropical islands do. The rooms were not as basic as I had expected and things looked promising so as soon as I had changed I went for my first snorkel. And this is where it all started going down hill. The supposed amazing house reef appeared to be mainly dead. I though perhaps it was just the area I had gone in, close to the pontoon, that was damaged. I decided to call a night and went to dinner. Sadly I was met with more disappointment. In the restaurant we were to be allocated with a table and that was were we would have to stay for the entire week. The food itself was okay – nothing amazing and as I found out based around a limited selection of recipes. The curry’s were always good, but after one week I had my fill of fish curry.
The following day I rose bright and early to go for a dive around the house reef. Again I had high hopes but again my hopes were dashed. The dive was extremely disappointing, with strong currents and dominated by brown, dull and dead coral. The fish selection was mediocre and equally disappointing. For the afternoon I opted not to dive again but try snorkeling on the other side of the island. This was the supposed house reef that people had raved about on Tripadvisor. All I can say is that these people had obviously never seen a decent coral reef. Bar the odd “normal” outcrop most of the reef was again dull and dead. This holiday was turning into a huge disappointment – one week on a small island with overwhelmingly dead coral and as it turned out on-off weather was not what I had hoped for.
Things however were soon to get so very much worse. My first days I was overjoyed by the island cats, in particular an adorable “blue” kitten (who I called Blue) who was terribly sweet, adorable and cuddly. Then after my 2nd dive (this time a good wreck dive) I saw two men carrying a box of screaming kittens. Myself and the other divers stopped them and to our horror we saw in the box new born kittens that were still so young their eyes were not even open. Despite our emotional and vehement objections that these kittens should be returned to their mother or they would die the men took the kittens off on their speed boat. I was absolutely distraught. I went straight to the hotel manager to complain. He promptly told me they would be fine and would be put on an island. If we were concerned they would also catch the mother and take her there too! When I continued to complain he told me he did not care at all about the cats and only cared about the happiness of the guests. My happiness, as a guest, would it appear not be relevant however.
I demanded to speak to the manager, and threatened to go public on social media with this heartbreaking story. On digging deeper I found out that this was standard practice and had happened the year before and was happening again at the time moment – due to the cats not being neutered there were too many so they would catch them and dump them, to essentially die, on another island. Now I also understood how Blue’s little sibbling had the most horrific, raw and bleeding neck wound. Someone had clearly tried to catch the poor little soul with a wire trap (or possibly just tried to strangle it) and the result was a raw, open wound on this kittens neck. I was no longer able to sleep worrying about the fat of little Blue, no more than a few months old, and her injured sibling.
The next day I got to speak the the CEO via telephone. I had a long discussion with him, during which he assured me he himself was a cat lover and had cats himself, and during which we discussed the options. Option one was that I would go public with the animal abuse that was happening or alternatively I would fund for a vet to come over in February to neuter the cats (there is not one single vet on the Maldives due to the government not allowing them to import veterinary products). To me this seemed like a simple choise – make money or lose money or do the right thing or do the wrong thing. He had said that the action was a result of a few people complaining – but how many people were happy with the cats but never said a word? I know I was not the only one who had selected the resort because of the cat pictures. To me this seemed like a potential business opportunity in itself. With dying coral why not optimise another resource -cats? I for one would pay extra to stay at a hotel with animals.
The rest of my stay remained a disappointment, the snorkeling did not improve, the weather got worse (afternoons with nothing but torrential rain) and more distressing examples of animal cruelty, including one cat, with an injured front paw, whose back paw was deliberately snapped broken. This was witnessed by other tourists, who like most I spoke to, where appalled at the dreadful treatment of the cats. Again I complained and was assured this would be looked into. I also informed the resort that I would be adopting Blue, and possibly her sibling, and would get the vet I was going to send to bring her to Europe.
I was very happy to leave Biyadhoo island behind. The Tripadvisor reviews had been so very far from the truth that what was meant to be a relaxing weekend of snorkeling and relaxing turned into a dull, distressing and horrible experience that I was desperate to see end.
Happy as I was to get home I was then absolutely shocked and appalled to then hear from a tourist still on the island that the order had been given by the management to clear all the remaining cats from the island and that little Blue, who I was going to adopt, had been one of the first to go. I was, and still am, absolutely devastated that this little life was needlessly snuffed out, by a management so intent on making a profit and disregarding customer complaints that they did not want to hear. They were only interested in the few that complained about the cats that they where they intent on ignoring the multiple complaints they received from guests about how the cats were being handled. They clearly also presumed once I, and the other guests, were gone that that would be the last they would hear of this.
My message to the management of Biyadhoo is shame on you and how wrong you are. In today’s world it is a very high risk strategy to ignore a guest, who works in social media, and dismiss they complaints as worthless. In today’s world full of animal lovers, who are very active on social media, it is a foolish thing to publicly be seen to be killing of cats that had a positive future. As to the future of the island – I can only see it getting worse. Now with the cats all gone the rat population (which was an issue in the past) will explode again. According to the management this is simple to resolve with poison. Will that get a mention on TripAdvisor I wonder? Will families with children want to visit an island riddled with rat poison? Will people really want to continue visiting an island that how coral and fish being killed off even more due to poison leaching into the water? I know I would not want to. Whereas TripAdvisor let me down this time I hope for the sake of other travellers that it does not let them down in future around what Biyadhoo Island Resort is really like.
UPDATE: Blue has been found alive but not looking happy and is losing weight & the island she is on has now been closed and with the dry season she will have limited access to water. This has now turned the importance of this post from a focus on boycotting #Biyadhoo island to rescuing Blue – or #RescueBlue – and is now URGENT! I don’t know how many days Blue has left. Please contact Ministry of Tourism & Ministry of Health in the Maldives to ask them to step in and help, share on Facebook, Twitter, Google+, Linkedin etc. PLEASE HELP SAVE BLUE!
As you will have seen my last few blogs were about a rescue mission to save 60 dogs in Romanian who were losing their shelter and faced death on the streets as a result. I have been working flat out on this on Facebook and consequently have had not time for blogging and very little time for Twitter. The whole rescue action was run and organised through a Facebook group “Help Save Anca Florea’s Dogs After Shelter Destroyed”. I was on there daily, doing some posting and sharing but mainly working in the background through PMs helping organise the rescue.
The first amazing success was that we actually managed in a month to save all 60 dogs and all but 6 are now safe in the UK or Germany (the final 6 are due to come to the UK in a few weeks). Through Facebook we found homes and funds to rescue these dogs (around £200-£250 per dog). I never in my wildest dreams thought we would do it and I am so incredibly proud to have played a part in this amazing rescue mission.
The second amazing thing though is the impact it has had on my Klout. I had started to get close to dropping below 60 and had been working hard at Tweeting and Facebooking daily to try to keep my score up. It was tough work and I barely scrapped over 61. Now I have a Klout score over 64. Wow – Klout clearly approves of my dog rescuing work!
It does raise an interesting point about Klout for me. Hard as I had tried to be relevant with my posts around my area of specialisation (pharma and digital / social media) through Twitter it turns out that the real klout is to be had with the animal lovers on Facebook. Clearly by being uber active on Facebook with this group I have had far more impact online than in pharma. I am happy with this though as this actually reflects the offline impact. Much as I would like to have an impact in the pharma social media offline world (e.g. get more consulting projects) it really does not compare to the impact of saving 60 dogs lives. There is something incredibly humbling and at the same time incredibly empowering about saving this many innocent lives. It puts the rest of what I do in perspective. It was far harder work than trying to up my Klout score but so very much more worthwhile.