Category Archives: General
The value of respecting your customers … in pharma
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.
The value of respecting your customers
The news is currently awash with a spectacular example of a company failing to have any respect for its customers. When #United decided to have a paying passenger dragged off one its planes to accommodate employees, whom the airline felt had more right to be at work the next day than said customer, they showed a total disrespect for their customers. The incident, and the initial response of the CEO, also showed a total lack of respect, and understanding, for the power of the citizen journalist and social media.
The fact that other customers filmed the shocking incident and shared it online really should not have come as a surprise, nor should the fact that it got picked up by the media and went viral. The days of being able to just bury incidents under the carpet are gone. Whilst not all examples of bad customer service go viral it is now a real danger for any company, and as such all companies need to start being much more vigilant to customer complaints, especially when these are posted to a social media network.
The other factor here is also basic marketing. When I did my Masters in marketing one of the things we learnt was people talk more about a negative experience than a bad one. It is also accepted business wisdom that happy customers are more profitable for companies – they spend more and it is cheaper to retain them than it is to gain new customers. The other thing we learnt was that a company can turn a customer with a negative experience into a loyal customer by the way they handle a complaint. It is all about making the customer feel valued.
I have numerous personal examples that support these facts. In fact my motivation for this blog post is not the United incident but my current debacle with Turkish Airlines. Right now I am an extremely unhappy customer and have been appalled at their dreadful customer service. As a frequent flyer with airlines like British Airways I have come to expect a certain degree of customer service from reputable airlines and I had been under the impression that Turkish Airlines also fell into that category but clearly not.
The issue in question was entirely my own fault but highlights the difference between an airline like British Airways and Turkish Airlines. I recently booked my holiday to the Philippines but to my horror a couple of hours after paying for the flight I realised that I had booked the wrong dates (due to still being under the weather with my Hashimoto’s btw). I called Turkish Airlines up immediately to try to find a solution to this. I was greeted with an unfriendly and unhelpful rep who refused to help in anyway. This is entirely at the discretion of the airline as I know that British Airways in these situations give you a grace period of 24 hours in case this happens. Not Turkish.
Very distraught I wracked my brain for what to do as I now faced spending less than 5 full days on the beach for 3 and bit days of travel! I then phoned them back to ask about buying a single ticket out on my original planned date and then using my return ticket as planned. Again I spoke to a less than friendly and unhelpful customer service rep who informed my that this was also not an option. I would have thought Turkish Airlines should have jumped at the option of selling me a second ticket, especially as I am sure the currently climate and laptop restrictions on flights will be impacting their sales. I then complained via Twitter and got a much more friendly and helpful response – they lodged my issue as a complaint with customer services for me. Yay!
But no. I got an email from the customer complaints department that it would now take them around 7 days to get back to me! In 7 days time I had hoped to be in a flight and also needed to organise my accommodation! Why on earth would it take them that long to contact me?! To this day I have still not had a response from them, despite numerous follow up tweets. A swift response would have placated me, even if only to sell me that single ticket, but now days of silence later I am a very irate customer who is telling everyone I know, including some very frequent travelers who fly with Turkish (sorry … who used to fly with Turkish). The window for Turkish Airlines to retain me and my friends as customers is rapidly closing – if they do not want my money I am sure many other airlines do.
This experience contrasts with my other recent travel experience, namely with the Radisson Hotel in Austin. There I also complained about a few issues I had had at the hotel. Their response however was very prompt, courteous and professional. When I complained I really felt like I would never stay in a Radisson again but following their fantastic customer service they have managed to flip the situation and turned me into a loyal customer. I now know that if I ever have issues again I can trust this hotel to resolve them in a positive manner and as a result I will have no issue in picking the hotel over another hotel on my next trip.
I am generally a very loyal customer (last year paying close to £1000 more just to fly with British Airways) and I, like many other customers, am actually quite easy to please. Listen to me, respond to my contact request and treat me like a valued customer who you would like to retain. It is my money to spend and I can easily spend it with another company. Keep me happy, like British Airways always does, and I will tell people about my great experience and keep coming back. Make me unhappy, especially by treating me like you have no interest in my future spend with you, and I will tell everyone I know and take my money elsewhere.
Whilst a single customer may not per se be of interest to the company, their friends, family and extended network may be. As word of mouth spreads across that network, as is the case for United Airlines, you start to see a real impact on revenues. Counter that with the cost of good, courteous and helpful customer service, it just makes good business sense to treat your customers with respect – each and everyone of them.
Addendum
Within an hour of writing this post I received the following response from Turkish. I have no idea why it took them days to provide a standard response like this. It also does not address some of my issues that I complained about. You can see my response below too. Clearly I will not be flying with Turkish Airlines again and I will continue to advocate against flying with them. If you have had similar negative experiences with them I would love to hear about them too.
De Puy and their patients
This morning I spotted an article in The Telegraph about how patients may have been fitted with faulty hip replacements due to a manufacturing error at the De Puy plant. According to the article De Puy is not being exactly responsive in answering questions on this and may have known about the problem for some time. Ill fitted hip replacements can be very painful for patients and can even be a patient safety issue.
For me a few things sprung out of this issue. First and foremost no healthcare manufacturer should ever ignore potential patient safety issues and if De Puy knew about this flaw they had a duty of care to their patients to inform the regulators so that said patients could be closely monitored for potential problems. We were all appalled by the recent car scandal where manufacturers lied and tried to ignore a manufacturing fault – but if De Puy did knowingly ignored this problem then they too deserve the same villification, if not more. After all here we are talking about surgically implanted devices not cars – and a potential direct risk to patient safety. After the healthcare’s efforts to address its reputation problems I will also be disgusted if this turns out to be another example of “big bad pharma” (whilst De Puy is a device company it is owned by pharma’s J&J).
Shocked at this news post I naturally went straight to the company’s home page to see if there was more news. Afterall if I were a patient or had a member of the family with a De Puy hip joint I would presume that the company has posted something to their website to provide me with information. I would also do the same if I worked for the media btw. I was therefore very shocked at what I found on their website.
According to their website they are inspired by us (I read that as including patients) and listen to patients and yet there is no option for patients on the website! As the image below shows they are only interested in HCPs, job seekers and vets. What about the poor patients? And indeed what about the general public and media?
In this day and age not having a general information website open to the public is questionable to say the least. This is doubly the case for devices which do not face the same strict regulatory requirements as pharma. Now clearly HCPs are the company’s main stakeholders, which is fair enough, but with most people now turning to the internet for information, including patient’s friends and family, it seems ludicrous not to offer up some general information about the product that is going to be surgically implanted into the patient. My mother is likely to need a hip replacement in the near future and I will want to know all the details about the product, including the manufacturer, and I will visit their website and expect to find information there.
This is of course also an issue today with new of a faulty product hitting the news. How can I trust a company that is apparently selling faulty hip replacements but refuses to acknowledge its end users the patients? How can I trust a company that refuses to communicate with me – even if only to tell me that due to regulatory requirements they cannot share certain information?
The other thing I did was to check their Twitter handle – again an issue like this raises questions I want to ask the company via my medium of choice, i.e. social media. Whilst it looks like someone has secured the Twitter handle that is as far as it goes. Whether it is De Puy or someone else who owns this is unclear but either way this looks bad on De Puy. Firstly if someone else has secured the handle then shame on De Puy for not having noticed this and resolved this issue. If it is their handle then at least take ownership and make it look formal and just state that you have not launched it yet. As it is it just further adds to my bad impression of De Puy.
I know I am just an insignificant carer and my mother just another patient but I for one will be talking to my parents about this and suggesting that if their surgeon suggests a De Puy product they ask for other options. I for one do not trust this company to insert a device into my mother. I wonder how many other carers and patients will feel the same as a result of today’s news and today’s lack of transparency from De Puy?
All I wanted for Christmas …
This time of year is often a time of reflection. It is a time of thinking about what you really want for Christmas – what items go on that famous Christmas list. What are the things you would really love Santa to bring you – and being Santa you can wish for whatever you want.
This year there were some practical things on my list – including an electric blanket and a pasta making machine (both of which I got – yay!). There were also though some wishes and hopes on the list. I have one wish every year and that is for donations and miracles for the dogs in the Bucov shelter that I support through Hope for Romanian Strays. With now over 1500 stray dogs living in the shelter (with an original capacity for 700 dogs) and of those over 300 puppies, there is never enough funds to help them all. The authorities do not provide enough food for that many dogs so it is up to us, and our supporters, to provide the additional food and care to try to keep the dogs alive. There are constant medical and emergency cases, like newly born puppies or injured dogs dumped at the shelter gates – essentially being left there to die. My wish did partly come true as thanks to some generous supporters and fundraising the dogs did get a Christmas meal. This is of course a drop in the ocean but at least they did not go hungry on that special day.
Puppies in the Bucov shelter getting their Christmas meal
My other Christmas wish this year relates to work. Having left ZS in March I have gone back to working as a freelance consultant, culminating in an extremely busy December. However with my contract coming to an end in January I am again looking for the next opportunity. Whilst I would love the stability of a permanent job, the reality is there are not that many permanent roles for someone with my level of expertise and seniority. I also have such a huge passion (and depth of experience) for my area of specialisation (healthcare digital and social media strategy) that I have no desire to even consider anything else (except perhaps animal rescue!). I do also love the flexibility that working as a freelance brings and so I am putting feelers out again for some more contract work. As always it is a balancing act between finding new opportunities and meeting the requirements for the current contract – and this is one of the down sides of freelance work. I will have to start looking for the next opportunity whilst working flat out on the current contract – and find time to rescue dogs and take care of my health and personal life. I’m tired already just thinking about it! And so I make my wish and I hope that one of my tweets or posts ends up fortuously in front of the right person at the right time and I end up with a new contract for 2016. Fingers crossed ….
Linked to the above wish is another work related wish – a new laptop in the shape of the new Mircosoft Surface Pro. Sadly this is not a wish that Santa was able to grant this Christmas because Microsoft decided that Europeans are second class citizens compared to the US and that we have to wait 6 months to get our hands on this new shiny gem. My wish will have to continue being a wish only until March when I hear the Surface Pro will finally go on sale in the UK. Annoying.
My final big Christmas wish of course has to be health related. If you follow my posts then you know I have an autoimmune disorder called Hashimoto’s. I think most patients with autoimmune disorders wish for improved (or at least stable) health. When I am happy and love what I am doing (and get plenty of sleep, eat well, etc.) I have no issues whatsoever with my condition. Sadly if I get over-stressed, sleep badly, or slip up on my food (e.g. eat something with Gluten in) I end up feeling pretty pants. Of course I plod on but there will always be a wish for that magic pill to come along and make life easier – or indeed cure my condition. That will stay a wish for a long time though as that is unlikely to happen! My other, more realistic, wish therefore is that more people are educated about the reality of autoimmune diseases, including doctors.
I got to spend my Christmas this year with my family, including my brother who is a GP. I was really saddened to hear that he had no idea the impact gluten (and diet in general) can have on patients with autoimmune diseases. I am not sure if he took my gluten free diet that seriously – I suspect like many doctors he felt that just taking my pills should be remedy enough. This makes me sad as I know the difference lifestyle makes on quality of life, and disease progression, for many patients with autoimmune diseases, but if doctors do not provide information or even support in this area then life just gets that bit harder. There really is nothing more frustrating that having your condition dismissed by your doctor – or indeed your online research either. Yes there is a large amount of incorrect and bad information online, but there is also a huge amount of life changing, accurate information out there. The fact that some of this comes from patients makes it no less valuable or accurate. Afterall how can a healthy doctor really understand what living with an autoimmune condition feels like and who are they to judge how we feel if we make lifestyle changes? And so I wish that more doctors listen to their autoimmune patients and try to understand their needs and conditions better. I wish more autoimmune patients had access to a great doctor like I do here in Switzerland.
If I could have my wish for a healthy 2016 and a new contract or opportunity to come true then I can also help make my first wish come true – I would be able to make a large donation to my charity and thereby rescue the lives of more vulnerable, neglected dogs in Romania. So should you hear of any opportunities (perm or contract) then do let me know … and you can do your bit to help my wishes come true!
Sahsa – one of Hope for Romanian Strays rescues guarding the Christmas food for the shelter dogs – and looking very festive in the process!
Can social media cause a miracle?
Last week I wrote about the hopeless task I faced in trying to find homes for 60 Romanian rescue dogs who were about to lose their shelter. I truly did not think we could save them. I certainly did not think we would be able to find places for the very traumatised ones – who would want to give a traumatised dog a 2nd chance? I thought perhaps we could find a few homes for the sweeter gentle ones. I hoped that through social media we could find those few places and maybe raise enough funds to rescue these poor dogs.
Then the ball started rolling. A few more people joined the group and offered help. All of a sudden we had an offer for 15 places in a shelter in the UK!! My heart stopped – could this really be happening? This would be truly amazing! Sadly hurt ego’s resulted in this offer being withdrawn – we were gutted. But we got back to looking. Slowly more offers poured in. A couple of dogs were offered a place with one shelter and couple more were offered a place with a foster and a few lucky ones got offered forever homes. Now just over one week later we have found places for 32 dogs! I would never in my wildest dreams have thought this possible. I am totally utterly humbled by the out-pouring of offers of help. Thanks to the power of social media we have managed to pull of a near miracle. Thanks to people all over the world pulling together, sharing these dogs photos, posting on their walls, tweeting and ringing around we have managed to save the lives of 32 dogs in less than 10 days.
However in order to make this a total miracle we need to find homes for another 15 dogs and we need to somehow raise funds to cover the cost of transport. The cost per dog is €120 prep fee and then around £150 for the transport. A few dogs have been sponsored or their adopter are paying but for all the rest we have to pay. That is a very large some of money. So again I am hoping that social media can truly bring about this miracle. If by sharing and posting we can find 40 people to sponsor one dog or 80 to sponsor half a dog and if by sharing we could find 15 people who could home one of these dogs than we will truly bring about a miracle. So I ask each and everyone of you to share this post. Donate if you can and let me know if you can help any of these dogs in anyway.
You can donate via Youcaring here or via paypal to me: pharmaguapa@hotmail.com (and if you are donating for a specific dog please let me know.
Dogs that still need homes are listed below. Please share for them!
Basil – a lovely waggy-tailed chap who also has impaired vision due to illness
Greta – a very sweet lady with impaired vision due to an illness.
Tantalic – an old boy, scared but with a heart of gold
Rex is a great chap – he is scared of men and strangers but find with the ladies
Max – another great chap with a gorgeous smile. He is wary of strange male dogs but otherwise a chiroy little chap. He is around 2 years old
sweet LUPITA, 4 years old female, she was crying when we found her . She is dominant with some dogs over food. Friendly and loving to people, she barks at strangers as has a protective instinct. 18 kg 47 cm high castrated
Lea – dog on the left – very sweet 3 year old castrated lady. Lovely and not aggressive.
Indy – a gentle giant. Indy is a large lady around 3 years old with a lovely character – a total sweety
Griutu 1, a scared 5 year year old boy. Let’s show him there’s is more to life that Romania and find him a place to grow old free from fear. He deserves a home.
Griutu 2. An old, quiet boy who will not survive on the streets – we need to find him an urgent retirement home – old dogs deserve a chance too and certainly do not deserve to die in pain on the streets. Help us find him a home
BRIANNA, a beautiful dingo-like lady, sterilized, around 2-3 yearsold. Sometimes she has big mouth on her but she is a total softy, not aggressive with humans at all. This adorable girl needs a home urgently
This chap has gone through so much – can we prevent him going through more pain?
A happy waggy tailed dog soon to die miserably on the streets if we do not help
Griutu – an older chap who is a little scared but with some TLC will make a wonderful addition to a family
A desperate cry for help
I generally rave about how wonderful social media is but sometimes it can also be devastating. Yesterday I found out that 60 Romanian rescues will be essentially sent to their death on the 17th October. I have been following the care of these dogs on Facebook and have been helping try to find them homes. Their time is now up and they will die. I feel helpless, powerless and utterly distraught.
As you may know I am very active and passionate in trying to save dogs in Romania through my charity Hope for Romanian Strays. My passion is driven by the sheer horror of how the thousands of stray animals are treated, with dogs often beaten to death, maimed by other dogs, poisoned and so on. Whilst the shelter we support is one of the better ones, others are rightly nicknamed “death shelters” – dogs are routinely starved or beaten to death, succumb to disease or are killed by other dogs and the survivors are traumatised and live in poor desperate misery with minimal shelter or food.
All of this horror was unknown to me before I got active on social media. I would perhaps have read the add newspaper article or seen a TV programme, but for the whole I was not exposed to some of the most extreme and brutal animal cruelty in the world. Now I see it on a very regular basis. Needless to say it is always distressing and fuels my passion to help. Despite not wanting another cat I ended up rescuing a second one. Despite needing to save money I donate a large part of salary every month. And despite being overwhelmed with the huge need of my own charity I still also support a few individual women who rescue dogs despite their own meager resources.
Puppies – who will soon certain death on the streets
It was therefore absolutely devastating to hear this week that one of these rescuers, Anca Florea, was about to have all her dogs evicted. A few months ago Anca’s private shelter was raised to the ground – it was a ramshackle enclosure but she provided food and shelter to some very needy dogs. A group of us got together and started funding private foster places for Anca and trying to find homes. Anca then fell very ill and was hospitalised. Without her constant reminders over Facebook people started to forget about the dogs. The funds for the foster places have all but dried up. Anca took many of the dogs into her own home despite her ill health. Despite having to pay for her healthcare she still somehow managed to feed the dogs – albeit very very little.
This dog has already known the misery of the streets & soon will go back to that misery
Now the 60 dogs are to be evicted. She has the option of letting the dogcatchers come – cruel men paid per dog they catch regardless of how (resulting in many dead and injured dogs). They will take her rescued dogs, who have now known love and warmth, to a death shelter where the old and infirm dogs and puppies will definitely die relatively quickly but miserably. A few of the younger strong ones might last a year or so if they are “lucky” before succumbing to starvation and disease. To Anca this is not an option. When the day comes she will take them to a field and give them a fighting chance on the streets. Sadly the old and infirm and the puppies will almost certainly die. The younger ones, if they are not caught, will have a better chance. The reality is though that on the 17th 60 dogs that were safe will have their death sentences signed. They will face a winter of misery, pain, starvation, disease and eventually a horrible death.
A happy dog soon to be in danger on the streets
And now I feel helpless, powerless and utterly distraught. The mighty social media that has helped me so much with my health, brought so much benefit into my life now fails me. It opens my eyes to a horrific reality for some wonderful, happy dogs that are loved. I have shared their photos. I have begged for help via Facebook. I have asked people to retweet, repin, repost their photos. I have reached out to everyone I know asking if they know anyone who could help save just even 1 dog. I have failed. Social media has failed me. I have no idea what more I can do. All I can say is I will continue to post, to beg and to pray with every inch of my being that a miracle happens and some place can be found for these poor poor dogs. I will continue to beg you to share their posts, to share their photos in the hope that if everyone shares these photos someone out there will see them and decide to help. That through sharing we can save these lives. That you will help me save 60 dogs in desperate need through sharing this and that in doing so will restore my faith in social media to do good. Will you do that for me and for them?
UPDATE: A fundraiser has been started to raise funds for transport to foster places. Please donate if you can. http://www.youcaring.com/pet-expenses/help-save-anca-s-dogs/246573
This puppy won’t survive alone on the streets – will you help her?
A lab-mix who I’m sure could find a home if we tried
Tibi – an old dog that will not survive on the streets
A little terrier – small dogs have a worse chance on the streets
A happy waggy tailed dog soon to die miserably on the streets if we do not help
Ursulica – a lovely lady who wants to have a home of her own
This chap has gone through so much – can we prevent him going through more pain?
Already traumatised from abuse on the streets soon to go back to her worst nightmare
One of Anca’s early rescues – has not been on the streets for years – she won’t know how to survive
Safe off the streets today but next week in danger again
Another small dog who will be in more danger on the streets
A look of hope – please make that hope come true and help us
The evolution of medicine
The other day I listened to a really interesting presentation by Tom Blue, Chief Strategy Officer, American Association of Private Physicians, on the evolution of medicine. He made some fantastic points about how medicine, and the industry surrounding it, has changed over the years. It started with our battle against infectious disease, and the magic bullet approach (which became the blockbusters of yester year), and then evolved into specialisation and compartmentalisation around the different organs. Today we face a new era as our medical understanding has increased and where we understand that a heart ache may not just be related to heart but may be an indication of an overall systemic wide disease. Whereas we have built up an industry based on organ specialisation in fact it is that the GP is closer to the reality – a broad view across organs.
For me this totally resonates and makes total sense. Having been to specialists who focused totally on the organ (in my case the thyroid) it was my own research that led to pinpoint what the actual, systemic cause of my thyroid problems were. Admittedly it probably did not help that my Spanish endocrinologist was a heart-less, disinterested and unprofessional medic but had she had a broader vision she could have told me that in fact the problem with my health lay not in my thyroid but in my immune system.
The industry’s focus on organ speciality has not always had a positive impact on systemic disease like autoimmune disorders. When my mother came down with Churg-Strauss syndrome it took nine specialists to diagnose her as each was focused on their own speciality organ rather than her system as a whole – my GP brother actually diagnosed her sooner over the phone because he had a broader perspective.
When you look at all the specialists we have we do have some broader specialities like oncologist but there are few immunologists focused on auto-immune disorders. Pharma companies also need to move their focus from finding products to treat symptoms to looking for products to tackle the diseases. Cures would be fantastic but in the meantime products that reduce the effects of auto-immune responses (rather that treat the organ being attacked) are greatly needed.
However the healthcare industry is a very conservative industry focused on heavily entrenched ways of doing things – from the medical side as well as the industry side. Just seeing the slow battle of trying to introduce new technology and ways of interacting with patients it would be fair to guess that the change needed in how medicine is practiced and how products are developed will take even longer.
So perhaps rather than grumble at the various pharma websites that provide no interactivity or value I should applaud them for at least having made an effort. The next steps needed for modernisation will be far scarier and will require a huge industry wide shake-up. But who knows – perhaps the big leap required for digital and social media will help shake some of those traditional foundations enough to drive change?
Medicine of old
Too much to do too little time
I have been a tad behind at writing this blog post and responding to comments, which saddens me given the glowing responses I have got in some of my comments. In an ideal world I would like to write a post weekly, rather than the current monthly timing. I should also be responding to comments ideally within 24 hours which I am also failing to do. This blog is hobby which allows to me to share my thoughts on one of my passions – digital and social media in the pharma industry – and I do enjoy writing it. Career wise I am sure the blog helps too. Sadly working as a full time consultant, trying to support my charity, spending time with my cats, and dealing with an Auto-immune disorder which often leaves me very tired and requires me to sleep 8-10 hours a night, leaves me with very little spare time to do anything else (including blogging for my charity www.hopeforstrays.com). I occasionally also blog for my employer ZS around social media but I find that far less rewarding (for one I never get many comments glowing orotherwise!). It is the age old dilemma of too much to do and too little time.
This is of course a similar dilemma that many companies face with their social media and digital efforts. A number of companies I have advised on social media where taken aback when I told them how much content and resources would be needed if they wanted to truly engage via this channel. One local brand team, for example, were adamant that they had more than enough content to set up their own Twitter feed, which warranted them going against the Corporate guidance of using the local country Twitter account. When I joined the discussion my first questions was how much content exactly? How often would they be Tweeting and what were their monitoring plans? It turned out they planned to Tweet once per week – a far cry than the recommended multiple times per day! Realising how much effort and resources (tine and financial) would be required they ended up towing the line and using the country account and appropriate #. Whilst Twitter is a particularly active social media channel that requires high levels of content and monitoring, other channels also benefit from a steady stream of new content, which takes time and money to develop.
The other side of social media is of course the monitoring element. As I have already confessed I am far from following the best practice in terms of responding to comments, but I am not a large company with products and services and a reputation to defend. Whilst as an individual I can get away with taking a few days to respond, a company is expected to respond within 24 hours, 48 max. This again takes resources, as well as a clear process, to respond appropriately. This is the scary part for many pharma companies and is also the part that has led to automated responses (and there are some classic examples where automated responses go horribly wrong). It need not be scary however if you have the appropriate level of resources involved in this activity and process in place to be able to respond rapidly. Technology can do a large amount of the leg work (for example sending an alert that a response is required) and having a team of people who can respond then facilitates responding within the time-frame required.
Many companies I know have 1 or at most 2 people dedicated to social media. In my opinion this is not enough. In fact for most tasks you should never be solely dependent on just one person because when that person is sick, on holiday or decides to quit, the company is left vulnerable (and given that you are probably requiring them work through holidays and sick days they are more likely to be sick, and eventually quit). That does not mean that you need to employ another dedicated resource but it does mean you have to have other employees appropriately trained so that they can step in if required.
For companies looking for resources in social media but struggling with restricted headcount and resources, there is one resource that few are totally optimising – their own internal network. Looking at social media there are now many employees who are active with social media in their personal life who, with appropriate training, could be called upon to help out. It is a useful skill for many people’s career and there are many ways of rewarding or incentivising people to provide that additional support. As resources within the industry become more restricted, but the demand for digital and social content and engagement rises, the industry will need to start thinking a bit more out of the box to find solutions such as this.
Sadly this is not a resource I have access to. Much as my cats take an interest in my laptop (sitting on it, walking over it, etc.) I have not yet managed to train them to write blog posts or respond to comments for me. All I can do is keep trying to find time and when I don’t, keep apologising. And perhaps posting more kitteh photos because everyone love a good kitteh photo right?
The Don helping out
A patient’s point of view
I was recently involved in a workshop for a pharmaceutical product and one element we talked about was the emotional journey a patient goes on, and how digital tools played a role in that journey. This really resonated with me as a patient.
We are of course all patients at some stage or other, but some of us are patients with chronic or long term illness which require on-going treatment. In my case I have Hashimoto’s, which causes hypothyroidism, and I will need to take thyroid hormones the rest of my life. My journey as a patient with a thyroid condition has been highly emotional, distressing and sometimes extremely difficult.
A patient will experience a whole array of emotions as they go through their own journey. Mine started with joy when I was told I had hypothyroidism – I finally had a reason to my sudden and excessive weight gain. Unlike in some other conditions I never really felt isolated, in part because I was very open on Facebook about my hypothyroidism, and this resulted in a surprising number of other friends also identifying that they had the condition. I also initially did not have many problems, it was only in the last year or so that things got worse and it was at this point that I would have been in danger of feeling very alone with my condition had it not been for Facebook.
As my condition and health deteriorated, the journey became more emotional and more distressing. I put on weight again, felt lethargic and was constantly tired, and I felt depressed and low. I was very miserable. I also got increasingly desperate. As an educated woman, working in the healthcare industry, I knew that something was not right with my health – something was wrong. As per my previous post I received absolutely no support (informational or emotional) from my then doctor.
In the days of old I would have been totally alone at this point in my journey. I would not have known that it was not right that I was feeling this ill. I would have been totally dependent on my doctor’s response (good or bad). I have no idea how I would have coped with the despair, the depression and the fear (and believe me thinking that you may spend the rest of your life feeling exhausted and listless is very frightening).
Fortunately today we have the internet and social media. It really was a game changer for me and my disease. I already knew that my symptoms were common for hypothyroidism but what confused me was that I was already on a very high dose and should have felt fine and full of energy. I was terrified of lowering my dose and feeling even worse (and putting on yet more weight) and yet this is what my blood results indicated I needed to do. I was also scared that it was just me – that other patients coped fine and it was just my body not working properly.
Through a support group on Facebook I very quickly found out I was not alone. In fact far from it. It turns out there are many patients on treatment but having issues with their health, their symptoms and their doctor’s response to their concerns. It was such a huge relief to find out I was not alone and to have fellow patients to share my story with and to be able to connect with people who felt exactly like me. The emotional support that this virtual engagement provided was immeasurable. I no longer felt alone and the feeling of despair went down as I felt there were answers and there was hope.
It was through this support that I found the strength to question my previous doctors’ response and seek further treatment. I paid, out of pocket, to see an endocrinologist in the UK and I armed myself for that appointment with as much knowledge as I could, from the internet, in order to ensure I received the optimal treatment for me.
My appointment with Dr Morris was like chalk and cheese compared to the Spanish endocrinologist. He was supportive, listened to me and provided some solid advice, which included bringing my dose down. The way he advised me took some of the fear out of lowering my dose.
The rest of the fear was taken away because, through my online searches, I had found out that in a very small minority of patients being on too high a dose can cause the same symptoms as hypo even though they are hyper. Turns out I was one of this small minority.
The other thing Dr Morris did was confirm what I had suspected – my hypothyroidism was caused by Hashimoto’s disease. Following the Spanish endocrinologist’s failure to tell me what was causing my hypothyroidism I had gone online and done my own research using my blood results. Through this research I had self-diagnosed Hashimoto’s but it was also great to get it confirmed by a physician.
Armed with this confirmed diagnosis I did more research. Through support groups and blogs I found out that most Hashimoto patients have some form of gluten intolerance and that eliminating gluten could help improve health outcomes. Not one of the doctors I had spoken to over the last couple of years ever talked to me about my diet and the impact lifestyle changes could have on my disease. It was only through interacting with other patients online and doing my own research that I found out about the changes I needed to make to my diet and lifestyle.
As a result of my online research, I now no longer eat gluten and I have reduced the amount of goitrogenic food such as cabbage. I am also very careful about getting enough sleep and staying healthy. The impact this has had has been huge. I feel relatively normal again now, and whilst I still get tired easily I no longer feel depressed or listless.
My emotional journey has now come to a point where I feel confident and hopeful. Some fear still remains, for example how my need for ten hours sleep will impact my work and the fear that I may feel ill again in the future. But for now, thanks to resources and information I found online, my main emotions are relief, happiness and hope. I do not know where my patient journey will take me to next but I am certain I will find the support and resources I will need online.
New hope after the despair – just like sunrise after a dark night
Turning KOL into KOI
As I mentioned in my previous post most Pharma companies have a great idea of who their offline, traditional KOLs are but very little idea of who the Key Online Influencers (KOI) are. They also rarely have any real idea of how many of their offline KOL are active online and using social media. Pharmaceutical companies should have a far better understanding of the online activity of all their key stakeholders, including KOI but also KOL.
The reality is that most top KOL, who tend to be older, are not that active on social media, but they also would see little value in spending their time with social media. They are extremely busy and have already reached the top of their game – for them social media may be a waste of time.
Younger, up and coming KOL however are another matter. Whilst they may not be digital natives they are more adept at using digital resources and some may also already be using social media. This group is also trying to reach the top and expand their name within their field and the healthcare industry. To this group, social media can be a valuable tool, enabling them to extend their reach and influence, and giving them a leg-up to top tier KOL status.
This is a huge opportunity for pharma. KOL have always played a key role within the industry and building relationships with KOL is standard practice. One of the core elements to relationships of this nature is being able to bring value. Helping up and coming KOL building their “brand” online and helping them turn themselves into KOI could be a hugely valuable resource that pharma could offer this group.
So could a pharma company go about working with up and coming KOL around their use of social media? Absolutely! The first thing to do, as with all initiatives, is to do some research. Identify who the up and coming KOLs are (the chances are this has already been done by Medical) and then find out if they are active online, and if so how and where. Also find out whether their name already has digital klout, even if they are not themselves online.
The next step is then to reach out to them and find out if they would be interested in social media training. The key element here is to communicate the value to them and ensure they understand that this would be a totally neutral training, with no expectations of them to start tweeting information about the company.
At this point I often get asked about how to set this up internally, process-wise. The reality is that this process generally already exists. Companies often do media training with KOL and social media is a form of media so the same process, with a few amendments, could be used. It should be relatively simple to offer KOL social media training, either as part of their media training, or as a stand alone training. In fact given time pressures, and some potential reticence on the part of the KOL to participate, it is probably more effective to do a quick intro to social media as part of the media training, and then offer an additional social media specific training as a follow on. This initial session can be used to demonstrate the value of social media to the KOL personally. A follow up session can then delve into more details and provide more hands on practice.
The final element to remember is to be realistic regarding timing and ROI. Do not expect every KOL trained to become a KOI – start with conservative KPIs (for example 1 in 10 trained per year will become active on social media). Also remember to be realistic with timing – becoming active on social media does not happen overnight – allow at least one year for the KOL to fully master social media and to start seeing some impact from the training.
This training could however have a great positive impact, for the KOL, the pharma company but also for other stakeholders such a patients. As the KOL becomes more fluent and adept at using social media they will move towards becoming a KOI, ensuring good quality information becomes prominent in their field. From the pharma company’s point of view if the digital information they produce and share is of good quality and of value to the KOL, and their followers, the result will be more impactful digital assets with a greater reach.
Finally of course is the fact that this whole process can act as a great way to build, and strengthen, the relationship with that up and coming KOL, so that when they do reach the top the company has played a pivotal role in supporting them and being there, as a partner. And of course let us not forget that eventually all KOL will be KOI anyway, it is just a matter of time – this opportunity exists now but will not exist in a few years time!
Thank you to KOL / KOI Dr James Underberg aka @Lipiddoc for his insights into this post.
