My last post was all about the value of respecting your customers, particularly if you are an airline, and was based upon my terrible experience with Turkish Airlines. To complete that article I should add that my experience with Turkish Airlines continued to be bad including during the flight with some of the most inedible food I’ve ever attempted to eat, old airplanes with seats that did not recline properly and grumpy crew. My holiday itself however was awesome 🙂
As I looked back at this article though I thought it also worthwhile to add my opinion on respecting your customers in the pharmaceutical industry. For too long this industry has been very self-centered and not particularly focused on customers, especially patients (who I also include as customers). Of course the industry is “plagued” by regulation which has made it harder to be as customer centric per se as many other industries. We all know by now that the end of the blockbuster era and the patent cliff ushered in huge change and a shift in thinking for the industry but we are still not where we should be.
So why are we still not as customer centric as we could be? Regulation is often one of the first reasons bandied about for this … “we can’t talk directly to our patients” or “we can’t do that because of regulatory restrictions”. Very often this is however just an excuse. We can still be customer centric and comply with regulations. For starters many patients do not want to hear promotional messages about pharma products anyway so even if we could bombard them with product branded marketing this would still be pharma and not customer centric.
Even where we can do promotion for it to be most effective it should be targeted and try to provide some value to the customer. What is it that a physician needs or wants to hear about? If we develop content – promotional or not – with the customer in mind then we generally see far greater results than if we just stubbornly try to force our message down their throats.
Coming back to the regulatory side of things though I do also believe that it is time regulators also become more customer centric, particularly towards patients. Whist I do not support a US style DTC promotion I also believe that the pharma industry sits on a large swathe of data that would be highly valuable and beneficial to patients, and HCPs. Much of this data is never made available to patients – in part because of compliance but also in part because of the “fear” of regulation and legal action. Counter this with the number of misinformation that patients now have access to online I think there needs to be a change in thinking in how we communicate and share information online. I firmly believe that as an industry (both pharma & regulators) we have a duty of care to make sure that patients have access to accurate, reliable information. We need to drown out the misinformation, and make sure that the correct information is coming in at the top of Google searches, and not hidden away a few pages in.
A second issue is that whilst many patients may never want to know the data, or indeed even understand it, there is a growing number of active and educated patients that do want more information. The informed patient wants to have the data so that they can make their own decisions concerning their healthcare. The days when we as patients blindly trusted what our doctors told us are diminishing. As a patient who has experienced misinformation coming from a specialist, in my case an endocrinologist who told me that the symptoms form my un-managed Hashimoto’s were all in my head, I firmly believe in the movement of the informed patient and the need for patients to be more active in their healthcare. Had I relied on that endocrinologist, and not actively sought my own answers, I doubt I would be here now writing this post as I would probably have either been too depressed or died of heart complications due to over-medication in an attempt to reduce my symptoms.
I think it is high time that all those involved in the healthcare system start to respect patients as decision makers and work together to support the informed patient. How can we make all that data that pharma sits on, that may have no commercial value to the organisation btw, available in a digestible and understandable format for patients. Pharma often has the money and resources to turn the data into content and disseminate it but may not be allowed to – or may not have the incentive to. Much of that data may also have a public health benefit so one could also argue that pharma should not shoulder the burden of dissemination alone. Pharma companies at the end of the day are businesses and if they are not profitable they will go under and that also does not benefit patients.
There are many more questions but there also numerous answers. For starters pharma can start to work more closely with patient associations. Why is it that for many pharma companies the patient advocacy department, if there even is one, is only made up of one or two people?! Whilst we have huge brand teams focused on marketing to HCPs the number of headcount that is focused on patients is tiny by comparison. Pharma really needs to start ramping up in this area.
In turn though regulators may also need to re-assess that pharma patient partnership model. Not all diseases have a patient association but there may be online groups and individual patient experts. How was can facilitate partnerships here for the benefit of all parties? How can we all work together to find a model that supports patients, is compliant but also does not bankrupt pharma? I think the answer lies in the question … we need to all work together! We need to start talking more to patients, and include regulators in those discussions. We need to put patients firmly in the center of the equation, along with HCPs. We need to not only start listening more but also start being more active in driving the change needed to do this. Only then will we start to see an industry that is truly respecting its customers and meeting their needs.
I recently submitted my proposal to speak at SXSW next year on “Wearables: saving lives and improving outcomes” and the public voting on proposals starts today. It would be a dream to speak there but I know the competition is stiff so I have all my fingers and toes crossed and will be asking everyone to vote for me!
If you follow my blog you may have read my posts from earlier this year. That was my first time at SXSW and I have to admit it was a life changing event resulting in me leaving my job to go back to focus on my true love – digital strategy and innovation in healthcare. The event was incredibly inspiring, not only seeing such amazing innovation but also seeing how it could be applied to improve the lives of patients with chronic diseases like myself. As I listened to some of these amazing talks I thought how great it would be if I could also share some of my knowledge, passion and inspiration in this area, and so when my friend Jackie Cuyvers suggested I submit a proposal I went for it! I was actually interviewed for national TV about the impact of wearables so I thought why not speak about this topic!
I wanted to share want inspires me the most – how technology is having such a huge impact on patient’s lives and the revolutionary changes that are happening in healthcare as result, not just in terms of technology but also in the culture and mindset change. As an autoimmune patient myself I have a huge amount to thank for the internet, thanks to the information I found that led to my diagnosis, and the improved quality of life, but also in the inspiration from other patients that drove me to be an empowered patient and demand better health from my physicians. Back then I had got to the point were I could hardly get out of bed any more and had such extreme brainfog I was struggling to complete sentences; I now lead a normal, active life – thanks to the information and support I received online.
It is this that drives my passion at looking how innovation and new technology can do more for patients and help turn other people’s lives around, or indeed save them. In January I spoke about how social media is saving lives and now I want to speak about how wearables also have this capability. Wearables is of course the big thing this year, with a huge swathe of new devices of all shapes, sizes and uses being launched. The big ones are off course in the “health & fitness” arena like fitbit or new smartwatches such as the Apple watch. Everyone is talking about them and I have quite a few friends who have purchased new smartwatches to track their sports activities (I myself have invested in the new Swimmo watch). These devices are fantastic to help the reasonably healthy get even more healthy. But what about those that are not well or fit enough to run marathons or swim kilometres?
The real impact of wearables will come in how they are developed and adapted for those people who face real health challenges, whether it be Alzheimer’s or severe Asthma. Being able to wear a device which provides live support and information or that conatcts HCPs or family in the case of a medical emergency can have a huge impact in improving a patient’s life. Some options in this area already exist but few wearables on the market have been specifically designed for this purpose. Right now much wearable tech is focusing on the lucrative “fitness” and consumer markets but once we start to see more wearables being specifically designed for certain diseases then we still start to see some incredibly inspirational outcomes thanks to this technology.
It is on this topic that I hope to head to and speak at SXSW in March next year, with my friend Jackie (who will be speaking about social media listening and the implications of culture and language – think about the British and American understanding of the word “pants”). I would ask that you please help me achieve this goal by voting for me here by searching for “Fulford”, and don’t let me go alone – please also vote for Jackie too!
For full details of how to vote have a look at this document with instructions that I put together. The final thing I would like to say is that for every vote I get I will make a donation to my charity Hope for Romanian Strays which works tirelessly to rescue stray and injured dogs in Romania – so vote for me and help stray dogs!
Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today. According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals. In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.
My first jaw dropping moment was when I read:
“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”
“……….” That’s me being speechless. Really? So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not? Looking at this one point I go back to my own experience. I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head. This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror! But doctors are always right according to Mr Yaraghi!) and something was wrong. I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK. It turned out that stupid patient me was actually right and the specialist I had first seen was wrong. I had Hashimoto’s and I needed to do more than just take my pills to get back to normal. Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.
This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is. Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease. This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease. This is all thanks to this amazing tool called the internet and social media. I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news. This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.
Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare. He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either. What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness. In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg). This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight). I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.
“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”
Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted. Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element. If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes. After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life. If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her. I think it is fairly clear from this just how important the patient physician interaction is.
When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews. Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages. It is also not just about the medicine any more. It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking. You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.
So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare. The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end. In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system. I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.
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 🙂
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.
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.