Category Archives: Patient centric

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.

J&J strikes gold … and ignores it

So I was meant to write a summary of SXSW but I wanted to write about a post I saw today on J&J’s Facebook about autoimmune diseases (and in case you can’t be bothered to scroll through Facebook here the post on the J&J blog).  There were a couple of things that struck me.

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First the volume of engagement the post caused.  It was not just a few standalone comments but people were in active discussion with each other.  I have rarely seen that level of open, heartfelt conversation around a pharma post.  The discussion also really resonated with me, as an autoimmune patient.  The post was sharing the story of three autoimmune patients who overcame the struggles of their disease to get their lives back on track. Of course the thing that helped them all was pharmaceutical products and whilst no brand names were mentioned it is not a huge stretch of the imagination to realise they were talking about J&J products.

Whilst a few people were positive about the post, and how inspiring it was to see patients fight their disease and be able to overcome it and lead a relatively normal life, others had a very different point of view.  What they pointed out that actually many patients do not have the option of “overcoming” their disease and leading a normal life.  For many patients with an autoimmune disease there is no adequate treatment and daily life is a constant struggle.

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In fact one lady pointed out that these types of articles actually can have an adverse effect on patients as friends and family share them to show that other patients have managed … so why can’t you?  It can help foster the issue that many patients have were friends and family just do not get the struggle and perceive the disease to be something you can “get over” or something that is more in a patients head than being really that bad.

As an autoimmune patient myself I can tell you that despite medication (and I am 100% compliant btw) things do put me off kilter (like gluten).   When I am off kilter I can feel absolutely bloody awful.  It is not in my head – it is very real.  In fact since my last post, where I spoke about my brain fog and fatigue, I’ve had to experience one of the other nasty glitches this disease causes – emotional “trauma”.  I call it trauma because it is very upsetting. I have always been good at controlling my emotions and generally am a very level headed, laid back person but when my Hashimoto’s rears its ugly head my emotions can get all crazy.  I would liken it to the emotional turmoil some women go through during their periods.  One minute I’m fine and then next I’m bursting into tears.  I become over-sensitive and the slightest thing can set me off and become a huge issue.  The impact this can then have is that my over-reaction upsets me and makes me even more upset, spiralling down into an ever darker vortex.  It can take days for me to be okay after this and can lead to my depression re-appearing.

I am fortunate that I know myself well enough, and have battled depression on and off over the years (thank you Hashi’s!) that I have some great coping mechanisms (and some awesome friends who I can talk to).  Yesterday I was blubbing my eyes out, feeling like there was a raw gaping hole in my chest, today thanks to some of these coping mechanisms it is more like a small sore.  Tomorrow I will still be fragile but hopefully with care and self-patience in a few days this will all be just a bad memory and I will have my life back.  I am also fortunate that I have a job I love because it also really helps to just focus on my work and bury my head in that rather than dwell on the rollercoaster of emotions that is waging its own little war in my body.

And so I come onto my second point about the J&J post.  With all of this engagement happening as I went through all the posts there was one glaring omission.  There was absolutely no response from J&J!  What a wasted opportunity to really engage in a meaningful dialogue with your customers (and yes your patients are also your customers – not just HCPs).  Where was even the “thank you for your comments” type of response? Nothing.  A classic pharma one directional post – a “here you go enjoy but we don’t want to talk to you” attitude.  As an autoimmune patient I really welcome that J&J is sharing posts on this disease area, which gets so much less spotlight than cancer or heart disease, and yet impacts just as many, if not more, people.  I would have liked to thank J&J for the post and the subsequent discussion and would have valued their input into the dialogue.

Yes we are talking about patients where J&J medications have not had this same positive impact but what a great opportunity to show that you still care – and perhaps if relevant to point out how much money you are investing into R&D in this area.  It is also a fantastic opportunity to engage with patients and learn some valuable insights, which in turn could help generate even more engaging content.  I could imagine this would make for a great tweetchat or other posts pulling out some of the issues highlighted in the discussion.  Having worked for pharma brands I know the constant struggle to find that golden content that resonates and works.  Here it is being handed to J&J on a platter.

J&J you hit gold with your post but rather than mine that gold, and share its riches, you have just let it lie and fade.

Oh and by the way one of the patients in the post also joined the conversation … making J&J’s absence all the more glaring.  Hats off to the said patient – for sharing her story but also for the compassion, and openness with which she joined the discussion.

When a restaurant ignores your gluten allergy

I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases.  I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.

Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception.   Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad.  Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism.   I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened.  It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.

One of those changes was removing gluten from my diet.  I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten.  Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible.  It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy.  Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food.  In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.

sushi

This was clearly an mistake.  The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi.  I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu.  I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that).  The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).

 

What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well.  Must have been something I drank I mulled.  I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce.  When I asked about this the waitress informed me that the mango sauce had gluten in it!  As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough!  How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?!  This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.

Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”.  It is not something I choose not to eat.  Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not.  I would love to eat bread or pasta or random sauces like a “normal” person.  But I can’t.  And a restaurant should take my, and other’s, food allergies very seriously.  I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking.  Great.

Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough.  Firstly there is the fatigue.  Autoimmune fatigue is hard to explain unless you have actually experienced it.  It is more than tired.  I ache.  I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one.  I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days.  Trust me I haven’t!  Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion.  In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated.  But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive.  Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.

That unfortunately is not the end of it.  The other major symptom is brain fog.  Just as autoimmune fatigue is hard to understand and describe so too is brain fog.  Again I will liken it to a hangover – when you just cannot think straight – but far worse.  I have next to no memory right now and have to write everything down on post-its.  I struggle to clearly remember the bulk of some of my meetings – only the gist.  I am struggling with people’s names (although I have never been good with names).

Brain fog however is more than just memory – it is also means I cannot think as clearly.  For a split second today for example I could not remember how to look at the next week on my calendar.  Basic and yet for a split second I drew a blank.  I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self.  She said that she would never have guessed the difficulty I was having intellectually.   I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience?  How would they cope?

This then brings me to my final point.  Many of us autoimmune patients look fine, normal, healthy.  You may never guess the battle we are going through or just how incredibly ill we feel.  We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to.   Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel.  I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.

We do not want your pity though – but we do want you to try to understand.  And we also want you to respect our health and our allergies and not be cavalier about it.  If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open.  I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later.  Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.

I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored.  Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms.  Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out.  Let’s hope!

 

PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi.  And it was 100% gluten free.

 

 

 

 

 

 

 

 

 

 

Social media & breaking down health stigma

This week I saw a really powerful video called “I had a black dog, his name was depression” which was developed by the WHO to talk about depression.  Despite this video being a bit “long” at just over 4 minutes I watched it through to the very end.  As someone who has had my own issues with the black dog over the years the video really resonated with me.

I have certainly had to make compromises in my life as a result of depression.  Whilst people at work have never really seen the impact of my depression, my friends have.  This is because when you suffer from depression you work really hard to hide it and to carry on and invariable you have to prioritise your energy.  For me work has always won that prioritisation but that means that at the end of the day I had no energy left to meet with friends.  In hindsight this may have exacerbated things as I had no one to talk to and just fought my battle on my own.

Today however things are different.  Firstly I found out that my depression was actually a symptom not a stand-alone disease (it was in fact a result of my Hashimoto’s, for which I am now getting treatment).    Secondly I decided that as someone who works in the healthcare industry I have a duty to stand up and be a voice for patients, to help break down the social stigma and the silence that goes with this, and many other diseases.  I stopped making excuses to my friends (I’m busy, I have a cold, etc.) but become open and if I could not go out because of depression I told them. I was amazed at just how many of my friends then also came out and told me they too had had their own battles with depression.  We started talking and it often really helped.

The other big change though that I have seen since my first bout of depression in my early twenties is the impact of social media.  When I once posted on Facebook about it I had friends PM me to tell me how brave I was but also how it helped them to hear that they were not the only one having these battles.  I did not think I was brave – I think I was just being passionate about the my obligations as a patient who works in the healthcare industry.

Social media also provides people with a forum where they can talk to others, anomalously if they want, and get support when they need it.  I myself have written in the past about my involvement in talking a Facebook friend down from suicide via a Facebook group.  The lady in particular had set up a closed group called “Goodbye” where she shared that she had had enough and had decided to end it.  Members of the group included people from the US, Europe and Australia, so we really were able to provide her with 24 hour support.  We were there for her and provided her with the friends and support she did not have offline, without which I am sure she would no longer be here today.  Social media really did save a life.

The other benefit that I believe social media is bringing is to help break down the stigma and enabling people to talk openly, and show their support.  By moving depression out of the dark and into the public domain it can help patients, and give them the confidence to talk to people and seek help.  Knowing you are not alone can in itself be incredibly impactful.

Finally another thing to remember about depression is that it is not just a developed world problem.  Not surprisingly depression is a huge issue in war torn countries or where people do not have a balanced diet (as is the case in areas of extreme poverty). In these countries however the stigma is still very big around depression and talking about health problems, and here having access to an online resource where you can be anonymous can really have a huge impact.  Slowly as more people in these countries get access to the internet we may hopefully start to see technology starting to help improve the lives of patients in these countries.

We still have a long way to go to break down the stigma surrounding  depression and mental health but social media is helping.  The positive results should be seen not only in terms of patients quality of life but also economically as people get the support they need to be able to function and be productive at work.  I personally never took a sick day because of my depression but I know many people who have.  Reducing those sick days would be another great ROI for social media!

black-dog

 

 

 

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?

De Puy.png

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.

De Puy2

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?

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

Medicine of old

Packaging – people do care!

A couple of days ago I came across a very interesting question posted on Twitter. A patient had posted an image of their medication package and reached out to @novonordisk to ask why the new packaging was so big compared to the old packaging.

I noticed this post for a couple of reasons. Firstly I am always intrigued to see how pharma companies respond to direct questions from patients via social media. Will they respond, and if so how quickly and how appropriately, or will they ignore the question? I saw a great example of a tweet that Pfizer should have just ignored but instead they sent a totally inappropriate automated response – clearly no one had bothered to read the tweet!

Secondly this question made total sense and resonated with me. Like many consumers I am so fed up with excessive packaging that has become endemic in our society. I get so frustrated trying to grapple with DVD packaging or double packaging for food products. A pet hate is also large boxes for tiny products, for example my Fuelband came in a huge box which was mostly empty – why? I am aware of the damage we are doing to the environment and I hate contributing to this, especially by excessive use of packaging. This was then a great question that @martinzwart1 posted and I was intrigued to see what the response would be.

I was very happy to see a prompt response from @novonordisk, stating that they would get back as soon as possible with more information. This is a great example of how to respond when you are not able to respond immediately – far better than not responding and just waiting until you have the information to respond. @novonordisk then came back a day later with an answer – again very prompt – and also invited @martinzwart1 and me (by now I had of course jumped on the bandwagon) to get back to them with further questions. A great example of how to respond to a patient via Twitter.

Sadly the actual response was very disappointing. The reason Novo Nordisk has had to increase the size of their packaging is not through choice but rather as a result of new regulations from European authorities. This to me is so absurd. We have various EU and national directives aimed at reducing packaging and packaging waste and yet here is an EU authority demanding that packaging is made bigger!

I personally find this rather disgraceful and irritating. In a day when more and more people get their information online why on earth is there a need to increase package size? If patients require additional printed material could this not be requested at the pharmacy when they pick up their medication? Those, like me, that prefer to read the information electronically (or just ignore it) can then be served with our smaller, more environmentally friendly packaging. Why must we, and our environment, suffer as a result of over-zealous, backwards looking regulatory authorities?

Patient centric – this year’s buzzword?

The term “patient centric” seems to be cropping up more and more but is it just another buzzword,  like Multi-Channel Marketing was last year?  And what exactly does “patient centric” mean?

Looking first at the meaning of “patient centric” – it essentially is what it says!  It is about putting the patient at the center. Sounds simple – especially if you do not work in the pharmaceutical industry.  In most industries it is a no-brainer that you center your marketing, strategy and indeed whole business, around the end user of your product and service.  After all if your customers are not happy with your product or service you will potentially go out of business.  In healthcare, and in particular from the pharmaceutical industry perspective, things are not quite so simple.

To start with the industry still sees physicians as their customer, not the patients.  This is in part as a result of regulations but also in part historical.  Until recently patients had little say or voice in their healthcare and relied almost entirely on healthcare providers for information and, to an extent, decision making.  This, coupled with regulations forbidding most direct contact between industry and patients in most countries, meant that the patient rarely came into the equation.  As far as the industry was concerned the key decision maker, and therefore customer, was the physician.  Now as to how customer centric the industry is towards these customers is another story – and warrants a separate blog piece!

The advent of the internet and social media has led to a change in the dynamics between patients and their healthcare.  Increasingly physicians are not the only, or indeed in some cases the main, source of information.  Increasingly it is other patients who provide the answers and the information.  And increasingly other sources online provide information to patients – not always accurate or appropriate but there none-the-less.

A recent example I saw was of a diabetes patient who reached out to a closed group of online friends.  She had recently been prescribed a product by her physician but as a result of some of the things she had read online around side effects she was very scared of starting the treatment, despite her physician’s advice.  She was delaying starting the treatment out of fear, which her physician had not allayed (and indeed had probably not covered in the brief appointment).  She therefore turned to this Facebook group to express her concerns – not so much asking for advice as just wishing to share her feelings.  Fortunately for her a couple of people in the group had experience with this product and told her not to be afraid and that it really was not that bad.  They provided her with the more accurate, personal information she required but they also calmed her fears and provided the emotional support she needed.  As a result of this she started her prescription as her physician instructed.

So how does this story help a pharma company looking to be more customer centric?  Outside of the US the first response would probably be “oh we can’t talk about our products with patients so we are powerless in this situation”.  Poppycock I say to that!  Whilst in Europe companies are severely restricted in what they can communicate directly to patients they are able to communicate directly to physicians.  In the example above had the physician been more aware of the conversations that his patients are reading online he may have been better prepared to allay his patient’s fears.  Some appropriate patient support materials speaking to these fears may also have been useful for the physician to share.  In the US the same rings true but there is the added element that pharma marketeers need to be aware of the dangers of DTC advertising.  Due to regulations they have to document the long list of possible adverse events – which to many patients is far more scary than the disease!  Again being aware of how patients feel, are communicating and thinking, can help counter some of this – for example by moving away from being so promotional to being more supportive in the messaging.

In essence being patient centric is about bringing some of this customer centric thinking into the work practice.  It involves making sure you really understand your patients. How are they using your products?  What are their fears and concerns?  What support do they need?  What issues do they have taking your products compliantly?  How do you use this information in your daily work?  This is even easier to do today – just as patients have access to more information so do companies.  Using social media listening for example companies can identify what the key pain points are and look to provide support accordingly (either directly or via physicians).

This brings me back to my first point – is this really happening or is “patient centric” just another buzz word?  Judging by pharma companies websites it is real – many of them promote their patient focus on their homepages suggesting that this is indeed of strategic importance.  Sadly digging a little deeper shows that in many cases this is indeed just another buzz word.  In many pharmaceutical companies there is talk of being more patient centric but too little action to support this talk.  The regulatory burden puts many off.  The lack of innovative thinking hampers others.  But perhaps the biggest issue is the lack of realisation of just how import patient centricity really is.  Whilst the example above is of just one patient – mulitply this by thousands and you start to see an impact on revenues.  With patent cliffs, more specialised pipelines and tightening budgets every patient starts to count.  What good is it convincing doctors to prescribe your products if the patients are getting information online that then dissuades them from using the product?

Patient centricity must move beyond being a buzzword for the industry.  It needs to be embraced and incorporated fully by the industry today.  Without patients there would be no industry so it is time the industry started acknowledging patients and taking their needs, but also their potential power, more seriously.  Because if not who knows what the future holds for the industry – but I doubt it will be that profitable.

 

Patient's increasingly have a choice. What's your choice?

Patient’s increasingly have a choice. What’s your choice?