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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.

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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 in the pharmaceutical industry

This week I had the immense pleasure of attending SMI’s Social Media in the Pharmaceutical Industry conference.  As always I enjoyed the event, catching up with many of the #hcsmeu twitterati and hearing insights from the industry and patients.

SMI SlideThe event started for me on Tuesday as I led a workshop looking at how pharma can successfully engage using social media (you can find my presentation here).  With a small group we discussed some of the common issues that we still face in this space, for example internal barriers, lack of adequate process and poor understanding of this channel.

Most of these issues have been around for many years now and it does sadden me that they still need to be addressed in so many pharmacos.  On the other hand it is great to be able to have a much richer and deeper set of case studies to use in the battle in bringing some of these barriers down.  “We can’t because of regulations” clearly no longer cuts it – regulations have been clearly shown to not be a barrier.  Another element that appears to still be an issue, and which saddens me greatly, is the view that social media does not need to be approached strategically.  Whilst I am a huge advocate of pharma companies getting involved in social media I do not condone or recommend doing social media for the sake of it.  There does need to be a clear strategy and plan – otherwise you are just taking pot shots in the dark – and frankly doing any form of business, marketing or communication without a strategy is just plain old bad business.

I was very  happy however to see on Day 1 of the conference Stine Sorensen from Lundbeck discussing strategy, and not only its importance but the importance of having a regularly updated strategy (in this case she updates it every 6 months).  I was also very happy to hear Stine mention that she now has the review & approval time for social media content down to 25minutes.  I have had quite a few clients tell me that 24 hour approval times are unrealisitic so it is great to be able to counter this with the fact that quite a few companies now have process in place for near-to-live response.  Not being able to respond very rapidly due to inappropriate review & approval process should no longer be a barrier (and mini self plug – I can help you work this out).  In fact Stine supported everything I always say – there is no longer any room for excuses around not doing social media.  Those days are gone and, as her slides so beautifully shows, excuses are useless!

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Another great presentation was given by my friend Jackie Cuyvers, who recently left ZS to set up her own social listening company.  Jackie is an extremely experienced social listener and she now specialises in doing global / local listening.  Besides flagging the importance of asking the right, business questions, she talked us through some of the implications of social listening, in particular some of the linguistic and cultural elements that we tend not to think about.  She mentioned how even in the same language there are big differences across countries and groups in use of terminology.  In the UK for example “pants” means something quite different from “pants” in the US (underwear versus trousers) or the term “good crack” which means different things in the US and Ireland.  She also made the point that just translating content directly often totally overlooks cultural nuances and local idiosyncrasies. In English for example we use the term “kick the bucket” but in Slovenia the translation of this term would be “whispering with crabs”.  This has potentially huge implications on companies running social listening research, especially if they are dependend on pure technology or English language researchers.  I also loved the fact that Jackie got an image of a dog into the conference – tres social!

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Jackie’s summary of the 3 steps to social listening

One emphasis that came through throughout the conference though was the importance of patients and the incredible role they play, and the huge value that social media brings to them.  The event was actually kicked off by three fabulous ladies, Birgit Bauer, Silja Chouquet and Marlo Donato Love who shared some great insights from a patient’s perspective and mentioned one of my favourite quotes “patients are the most underutilised resource in the pharmaceutical industry”.  They talked about the importance of getting patients involved and the role they can play in working with pharma.  Silja then also went on to talk about patients participating and “attending” medical conference virtually via social media.  In fact she raised the point that whilst doctor’s are the main participants online at conferences patients are also increasingly getting involved as they search for more information on their conditions.  She also made some great points about the futility of pharma’s current approach to using promoted tweets and how this is potentially going to be a big issue resulting in dilution of high value content on Twitter.

Perhaps a highlight for me though was Trevor Fossey  who talked us through the impact of digital on patients and the NHS.  I was nearly crying as he told us that he has access to his NHS medical record online, and that of this wife for whom he cares, and that as of 1st April every NHS patient has a right to access their medical record online.  OMG!  As a UK patient, with a chronic autoimmune disease, not having access to my medical records has been a big issue.  I have been to numerous doctors, privately in the UK and abroad, and have never been able to show them my NHS blood results as I did not have access to them.  Of course the fact that I now live abroad and don’t have a GP means in all liklihood I still won’t be able to access them but the realisation of what this means for other UK patients, including my elderly parents, was profound.  Trevor mentioned some fantastic points about how impactful empowered patients really are – and how much money they save the NHS.  I can tell you I was certainly not the only person in the room blown away but Trevor’s presentation – despite being a room full of digitally savvy people none of us where aware of our right to access our medical records online.  Trevor found himself a whole group of advocates at the event (I for one have alreay shared to news to all my UK friends and family).

There were so many other great presentations, such as Letizia Affinito who showed us some great non-pharma case studies, and Pinal Patel from BMS who showed us how they are using social media in clinical trials – and more importantly how they are listening to patients and adapting their process in response to patient feedback.  An awesome point was made that often once a trial is over patients are just left alone – but really we should be thanking them and sharing the results with them (something BMS plans to do now thanks to feedback).  Charlotte Roth from Actelion also gave the Corporate POV around social media, bringing an additional dimension to the conference, while Liz Skrbkova shared perspectives around multi-channel engagement and online influencers. I also have to add that IMHO Liz was one of the best dressed ladies at the event 🙂

Last but not least was the pleasure of meeting all these amazing people and having some great discussions, including over wine and dinner.  Dinner also gave me the opportunity to catch up with a couple more of the #hcsmeu and the next day I was able to sample some of the most amazing cocktails at the Alchemist in the evening.  Afterall what would a social media conference be if it didn’t include the “social” bit!

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Cheers!

 

 

 

 

 

Wearables – worth the hype?

Today I went for my regular swim with my Poolmate watch and found myself very frustrated when yet again I found that it was not counting my laps correctly.  I presume I am probably like quite a few wearable owners in that I do not really use all the functions of my wearable device but I do expect it to get the basics right.  In this case the basic function is counting my laps.   Learning how efficient my strokes are is great but not much help if the device is not counting the laps correctly.  I have written previously about my frustration with wearables when they don’t work and again I find myself in the same position.   Not that long ago life existed without wearables and we seemed to do fine.  Given my personal “fail” rate with my devices I wonder if they really are worth all the hype … or where things better before they came along?

The answer IMHO is yes and no.  I think wearable technology is getting over-hyped but at the same time I think the opportunities that these devices offer are worth some hype nonetheless.  Whilst my fails where frustrating they did not have a huge negative impact on my life (bar having to go back to counting laps in my head).  In fact for many people a wearable is just a helpful addition to their fitness routine, which may indeed have a positive outcome on their health, for example the average fitbit user actually takes 43% more steps per day.  If the device fails the worst case scenario is that for a while we may do less exercise – or just go back to how we always did it in the past.

However in other situations wearables could have a significant impact on people’s lives and in these cases the last thing you want is a device that does not work (especially if the fail is not spotted quickly).  There are devices for example which patients could be using as a real support, for example in diseases like Alzheimer’s, or which have a large impact on their healthcare.  Budgets could also be impacted, for example a recent study found that hospital costs dropped 6% for those who were inactive and became active.  Failing devices which patients have become dependent on could lead to higher re-admissions and subsequent costs, or worse.

Linking the potentially very important impact from these wearable devices for some patients to a questionable device reliability does quite rightly result in a red warning flag.  Currently many of the devices are being built for consumer fitness and a fail rate just results in disgruntled, perhaps slightly less fit, consumers.  Moving these devices then into a more critical health environment without taking into account the greater impact could be a serious concern.  Are these wearable technology companies doing enough to test their devices for duration and reliability in a more critical environment?  Or are they just adapting consumer devices to seize a growing opportunity in the healthcare market? Are regulations adequate for these wearables – or indeed are regulations hindering innovation?

These are just some of the questions that accompany the hype of wearable devices.  Despite my frustration today with my device I am still a big advocate for wearable technology simply because I do believe with time we will see some very positive impact coming from them for patients.  In the meantime though perhaps we had best be careful of the over-hype and set our expectations around wearables more realistically.  I for one am looking forward to getting my new Swimmo watch but I am also taking into account that it may not be all it is cracked up to be – or all that I hope – but if it can count my laps correctly for the next few years I will be happy.

And if I get to talk about all of this at #SXSW next year I will be doubly happy!  If you have not done so already please vote for me: http://panelpicker.sxsw.com/vote/48954

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The dawn of a new patient era

Last week I wrote an article inspired by Mighty Casey’s blog post and in response to the very insulting post written by  Niam Yaraghi in USA Today.  The essence of the article can be summed up by quoting directly from the article:

“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”

As a patient I felt compelled to respond to this incredibly arrogant and derogatory post which paints patients as intellectually challenged when it comes to their health. I have personally experienced the effects of poor judgement from my doctors and the positive response of being an empowered patient – and I am certainly not intellectually challenged when it comes to my health!

I was expecting a few responses from patients to my post but I am positively surprised by the size of the response I have got from other patients.  This article has clearly hit a nerve, not just with me, but with patients around the world, and quite rightly so.

For years patients have had to put up with a patriarchal attitude from doctors towards patients.  Traditionally a doctors’ word was seen as gospel and patients were deemed uneducated enough to do anything but follow this medical gospel. This attitude still persists, sadly, with some doctors, and clearly also with some academics, despite substantial changes to society and access to health information.

For years we patients had to put up with being misdiagnosed, and having to suffer in silence.  Women in particular have born the brunt of negative responses from physicians.  A hard working woman (mother, lawyer, etc.) turning up with depression, fatigue and weight gain, for example, has generally automatically been diagnosed with depression and put on anti-depressants.  No further questions asked, no further tests done, problem solved. Simple. Except many of these women were not suffering from depression and had to subsequently put up with years of ill health – and any queries on this diagnosis put down to “hormones” or “emotions” or indeed “it’s all in your head” (this was the response one endocrinologist gave me).  We slaved on – sick, tired, depressed (despite the meds) and made do with being told what to do.  Whilst women often bore the brunt of this many men also went through the same thing.

There has however been a big change in our society and healthcare, both from the patient side but also from more enlightened doctors (and academics).  The doctor’s word is no longer always seen as gospel – for better or worse. Patients are now querying this gospel, and if they are not satisfied they seek other opinions and find their own answers.  Patients are standing up for their own healthcare and becoming empowered enough not to accept this medical gospel.   The internet and social media is allowing us patients to do our own research and to become more educated in our own healthcare.  While we may not have gone to medical school, and I would never suggest patients are more medically educated than doctors, we are becoming educated enough to be able to enter into a discourse with our doctors and to challenge the old fashioned gospel.  We know our own bodies and we know when something is not right.

There is now plenty of evidence of patient’s seeing potentially huge health improvements through their own empowerment and through taking a stand when they feel a doctor’s response may be overlooking a key factor.  Doctors, whilst highly educated and trained, are still only human and they are not infallible.  Today’s medicine is quite rightly moving towards a dialogue rather than the traditional gospel-like monologue.

After so many years of putting up with false diagnosis, of our queries and opinions being dismissed and of having to make do with sub-optimal health, patients are are naturally becoming more vocal in the healthcare arena.  So when an academic comes along and tries to put us back into that old patriarchal system and tries to tell us that we are incapable of evaluating our own healthcare, we are quite naturally angry and upset.  Years of not having had a voice has now made us louder and more vocal.  We will no longer make do with the medical gospel and we will no longer just accept a doctor’s word, unquestioning, if we continue to experience the same ill health.  We will dig deeper, we will look for more information and we will question the medical gospel in order to regain our health.  And we will respond when someone questions our ability to understand our own health.

I am proud to be an empowered patient and I am proud to see so many other empowered patients also speak up against this derogatory portrayal of patients as being incapable of making decisions about their own health.  I am proud to be part of this revolution in healthcare and to be a witness to the dawn of a new era in our own healthcare.

The dawn of a new era

The dawn of a new era

Patients are not total idiots!

Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today.  According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals.  In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.

My first jaw dropping moment was when I read:

“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”

“……….”  That’s me being speechless.  Really?  So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not?  Looking at this one point I go back to my own experience.  I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head.  This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror!  But doctors are always right according to Mr Yaraghi!) and something was wrong.  I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK.  It turned out that stupid patient me was actually right and the specialist I had first seen was wrong.  I had Hashimoto’s and I needed to do more than just take my pills to get back to normal.  Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.

thyroid

This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is.  Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease.  This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease.  This is all thanks to this amazing tool called the internet and social media.  I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news.  This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.

empowered patient

Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare.  He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either.  What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness.  In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg).  This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight).  I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.

“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”

Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted.  Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element.  If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes.  After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life.  If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her.  I think it is fairly clear from this just how important the patient physician interaction is.

When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews.  Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages.  It is also not just about the medicine any more.  It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking.  You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.

So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare.  The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end.  In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system.  I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.

walk a mile