Category Archives: Patient centric
My last post was all about the value of respecting your customers, particularly if you are an airline, and was based upon my terrible experience with Turkish Airlines. To complete that article I should add that my experience with Turkish Airlines continued to be bad including during the flight with some of the most inedible food I’ve ever attempted to eat, old airplanes with seats that did not recline properly and grumpy crew. My holiday itself however was awesome 🙂
As I looked back at this article though I thought it also worthwhile to add my opinion on respecting your customers in the pharmaceutical industry. For too long this industry has been very self-centered and not particularly focused on customers, especially patients (who I also include as customers). Of course the industry is “plagued” by regulation which has made it harder to be as customer centric per se as many other industries. We all know by now that the end of the blockbuster era and the patent cliff ushered in huge change and a shift in thinking for the industry but we are still not where we should be.
So why are we still not as customer centric as we could be? Regulation is often one of the first reasons bandied about for this … “we can’t talk directly to our patients” or “we can’t do that because of regulatory restrictions”. Very often this is however just an excuse. We can still be customer centric and comply with regulations. For starters many patients do not want to hear promotional messages about pharma products anyway so even if we could bombard them with product branded marketing this would still be pharma and not customer centric.
Even where we can do promotion for it to be most effective it should be targeted and try to provide some value to the customer. What is it that a physician needs or wants to hear about? If we develop content – promotional or not – with the customer in mind then we generally see far greater results than if we just stubbornly try to force our message down their throats.
Coming back to the regulatory side of things though I do also believe that it is time regulators also become more customer centric, particularly towards patients. Whist I do not support a US style DTC promotion I also believe that the pharma industry sits on a large swathe of data that would be highly valuable and beneficial to patients, and HCPs. Much of this data is never made available to patients – in part because of compliance but also in part because of the “fear” of regulation and legal action. Counter this with the number of misinformation that patients now have access to online I think there needs to be a change in thinking in how we communicate and share information online. I firmly believe that as an industry (both pharma & regulators) we have a duty of care to make sure that patients have access to accurate, reliable information. We need to drown out the misinformation, and make sure that the correct information is coming in at the top of Google searches, and not hidden away a few pages in.
A second issue is that whilst many patients may never want to know the data, or indeed even understand it, there is a growing number of active and educated patients that do want more information. The informed patient wants to have the data so that they can make their own decisions concerning their healthcare. The days when we as patients blindly trusted what our doctors told us are diminishing. As a patient who has experienced misinformation coming from a specialist, in my case an endocrinologist who told me that the symptoms form my un-managed Hashimoto’s were all in my head, I firmly believe in the movement of the informed patient and the need for patients to be more active in their healthcare. Had I relied on that endocrinologist, and not actively sought my own answers, I doubt I would be here now writing this post as I would probably have either been too depressed or died of heart complications due to over-medication in an attempt to reduce my symptoms.
I think it is high time that all those involved in the healthcare system start to respect patients as decision makers and work together to support the informed patient. How can we make all that data that pharma sits on, that may have no commercial value to the organisation btw, available in a digestible and understandable format for patients. Pharma often has the money and resources to turn the data into content and disseminate it but may not be allowed to – or may not have the incentive to. Much of that data may also have a public health benefit so one could also argue that pharma should not shoulder the burden of dissemination alone. Pharma companies at the end of the day are businesses and if they are not profitable they will go under and that also does not benefit patients.
There are many more questions but there also numerous answers. For starters pharma can start to work more closely with patient associations. Why is it that for many pharma companies the patient advocacy department, if there even is one, is only made up of one or two people?! Whilst we have huge brand teams focused on marketing to HCPs the number of headcount that is focused on patients is tiny by comparison. Pharma really needs to start ramping up in this area.
In turn though regulators may also need to re-assess that pharma patient partnership model. Not all diseases have a patient association but there may be online groups and individual patient experts. How was can facilitate partnerships here for the benefit of all parties? How can we all work together to find a model that supports patients, is compliant but also does not bankrupt pharma? I think the answer lies in the question … we need to all work together! We need to start talking more to patients, and include regulators in those discussions. We need to put patients firmly in the center of the equation, along with HCPs. We need to not only start listening more but also start being more active in driving the change needed to do this. Only then will we start to see an industry that is truly respecting its customers and meeting their needs.
I 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.
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.
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?