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.
Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today. According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals. In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.
My first jaw dropping moment was when I read:
“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”
“……….” That’s me being speechless. Really? So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not? Looking at this one point I go back to my own experience. I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head. This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror! But doctors are always right according to Mr Yaraghi!) and something was wrong. I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK. It turned out that stupid patient me was actually right and the specialist I had first seen was wrong. I had Hashimoto’s and I needed to do more than just take my pills to get back to normal. Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.
This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is. Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease. This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease. This is all thanks to this amazing tool called the internet and social media. I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news. This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.
Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare. He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either. What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness. In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg). This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight). I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.
“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”
Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted. Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element. If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes. After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life. If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her. I think it is fairly clear from this just how important the patient physician interaction is.
When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews. Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages. It is also not just about the medicine any more. It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking. You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.
So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare. The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end. In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system. I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.
Brilliant post about #autoimmune disease and #hashimoto’s – a must read IMHO
Originally posted on Natalie Hanson:
I had intended to write a post for Thyroid Awareness month (which was in January). I thought it would be important to share my experience, with the hope that others would get the help they needed way sooner that I did. But, if nothing else, this disease is teaching me to manage my own expectations about what I can do. So, it took me four months longer than planned to get this written. That, I’m learning, is my new reality.
On my birthday (In October) last year, I was diagnosed with Hashimoto’s Thyroiditis. If you know anything at all about the thyroid and it’s role in human biology, you’ll understand why I’ve been largely absent online. The thyroid controls the most basic functions in the body at a cellular level; when it’s not working properly, nothing in the body really works as it should. Body temperature, digestion, basic cell functions are…
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I recently had the pleasure of visiting a friend in Salvador de Bahia in Brazil, staying in the non-touristy Itapua on the outskirts of Salvador. One of the benefits of staying with a local was that I got to see a part of Brazil few tourists really get to experience, including visiting his family in the nearby favela. Needless to say it was a truly amazing experience and I felt very lucky to be there, to be welcomed into their homes and to get to appreciate some amazing home cooked Brazilian food. I am now a solid convert to Brazilian cuisine – and the passion fruit cocktails – totally amazing!
I have to admit that I had a few preconceptions about the favela and was really surprised to find high speed internet in the family’s flat, and that they all had smart phones. I had presumed that given that the favela were very poor neighbourhoods that internet would be limited and I certainly did not expect to see people with the lastest Samsung or iPhones. This was further compounded when I found out how expensive smartphones actually are in Brazil! Then again I also had not expected to be welcomed into a lovely, flat on the 2nd floor of a solid construction with a pleasant balcony overlooking the favela streets. Whilst the flat was basic it was very clean and had the “basics” including a television and the said internet. And did I mention the amazing food and cocktails?
As I was out and about locally I also spotted people on Instagram and Facebook. I know of course that Brazil is one of the top countries in terms of social media penetration and use, including on the big platforms like Facebook and Instagram and I also expected to see this is the more prosperous part of town. What did surprise me though was just how ubiquitous the internet, smart phones and social networks were in all parts of Salvador – from the high end part of town right down to the favela. Everyone had phones and everyone appeared to have internet access. This to me is something that we do not always consider when looking outside of our comfort zones in the US and Europe. There is sometimes still the misconception that in “developing” countries they are still “developing” internet and mobile access. Whilst Brazil is certainly not a “developing” country, parts of it are so poor and with such poor infrastructure that one could be tempted to bundle these parts into that somewhat derogatory term.
My lesson learnt was that even in the poorest, less well developed parts of the world, the internet has embedded itself, and often jumping straight to mobile connection. Smartphones are now no longer just for the rich or middle classes. Internet access, and increasingly mobile access, are starting to be a given – almost a basic requirement. As we look at developing our global strategies we need to stop thinking about splitting the world into tiers, such as “developing” but start splitting the world into customer groups. A Brazilian teenager in the favela probably has more in common with a Portuguese teenager than a Brazilian 40-something year old in terms of internet usage. When we look at the online world we have to remember that our offline geographic boundaries do not exist in the same way. Behaviour is a key driver, split by language, not geography.
Yet when I look at the pharmaceutical companies I have been working for, their structure, due to the regulatory environment, is clearly defined by geography. The shift in thinking to meet the new boundry-less world is still a long way away, and we still see Portugal and Brazil doing their own, often very different, online activities, even though their customers do not behave in this way. There is currently a duplication of budget and effort where synergies actually exist with the customer groups. The continued focus internally, rather than externally and around customers, continues to persist in too many companies and this is clearly a redundant way of thinking in today’s global digital age. In order to meet our customer’s expectations we need to understand them – and part of this is to break down our pre- and mis-conceptions about the big wide world of digital. We all need to get out of our comfort zones, go visit a favela and appreciate the ubiquity as well as the diversity that exists out there.
PS: All photos courtesy of Nokia or Samsung (sadly not my Samsung as I left my darling S6 behind to bring a cheap replaceable Nokia with a pretty poor camera)
Wearables are this year’s hot item. They are trendy and all the cool kids want one. They can link to your mobile, they can tell you your heart rate, how far you have run, calories burnt and they are shiny. I want one.
Or rather I want another one and this time I want one that actually suits my activity and lifestyle not that of some marathon running health junky. I also want a wearable that actually has a decent lifespan – both in terms of battery life but also in terms of years of use.
My first request, that of a wearable that suits me, has been quite hard to find. The majority of consumer wearables and health apps are heavily focused on jogging or walking. My recently purchased Samsung S6 has a health app, S Health, which seems okay, ticking quite a few boxes, as long as you are into running. You see my problem is that I do not jog and do not ever intend to jog (my body is not made for running). I walk a fair bit but not as a “sport”. The only real sport I do is swimming. Whilst the app does give you the option of adding a whole array of other sports the parameters for these is very restricted, and IMHO pretty rubbish. I am a “proper” swimmer, and even had lessons a few years ago to perfect my strokes. I swim a reasonably paced front crawl and I try to swim between 2-3km a day and I swim 1km in about 15 minutes. My S Health app however only gives me the variable of time – I cannot input what strokes or distance along with time. I swim faster than a lot of swimmers in the pool, doing a strenuous stroke, and what I swim in 30 minutes is very different from what they swim. Equally those powering past me in the other lane are swimming way more laps in that time frame. Yet the S Health app does not allow any input other than time. That is pretty rubbish.
So how about buying a wearable for swimming? Well I have. Been there done that. I bought a PoolMate Swimmers watch which counts my laps, speed, distance, efficiency and time. I loved it! It was great and allowed me to concentrate on my swimming without having to worry about counting laps. It also finally allowed me to get an idea of how I swim and how many calories I burn (turns out I am quite an efficient swimmer). Sadly though it is not “smart” so I cannot synch it to my phone or track my progress with an app. It does however come in colours other than the usual dull black (I opted for the baby blue version).
Then there is the lifespan of the product. I bought my PoolMate just over a year ago and have been using it on a very regular basis, but recently it has stopped counting laps properly. I am gutted as I now have to go back to counting my laps. The poolmate is however not the first wearable I have had – I had a Nike Fuelband too. That also turned out to be cool to start with before it went demented. In the case of the Fuelband I gave up on it when I had done a 2 1/2 hour hike up a Swiss mountain and the stupid thing told me I had not met my target of steps for the day!
Both of these products started with high cool and wow factors and I was very happy with them, only for them to then shatter my happiness by losing accuracy. As I look at many of the new wearables and technology hitting the market I notice that we do not seem to be that fussed anymore about product lifespan. Many of the new smartwatches may be mega shiny but they often only have a battery life of a day! What is the point of a watch that you need to charge every day?! The same actually goes for phones – but as long as my phone last a day with full use I am happy (my old iPhone 5 did not manage this at all in the end – it barely made 1/2 day). We seem to have moved into a world where we are happy for products to have a short lifespan and batter life – or is it in fact that we have just accepted that this is the new world because this is what the manufacturers offer us? Newer phones come out with more shiny functionalities but not much improvement on batter power. Wearables last a year or two and then there is the expectation that we will upgrade or buy a new one. Is this right? I feel like it shouldn’t be.
That said I have just gone and followed the trend in the purchase of my latest wearable. Fed up with my poolmate I clicked on an advert on Facebook (yes they sometimes work!) to a kickstarter page for the Swimmo Smartwatch. Looking at the specs and the description I got very excited. It sounds like exactly the kind of wearable I am after, as a non-jogging swimmer. It counts laps, tracks my swimming, has a heart monitor, is linked to an app and tells the time. In fact I got so excited I pledged! What I didn’t think about was the battery life and whether it would actually be better to wait until it was on the market to see reviews and whether it actually works. But no – I got lost in the shiny shiny excitement, and a bit also in the “ooooh” of being involved in the kickstarter stage. I suspect my new watch when it comes will indeed be shiny but I will probably have to charge it everyday. On the other hand I like their Facebook page – they are clearly really into swimming – and I love the photos on their Facebook page too :)
I have to admit that I have never been a huge fan of corporate rebranding. In theory a rebrand should go deeper than just the corporate logo and colours but should also include a change in direction and culture for a brand. Of course very often though the result is essentially a change in logo and colours and everything else stays the same. Some of the somewhat dubious reasons for a rebrand include:
- Change in management – essentially new management, pander to their egos and want to get rid of the brand that is associated with their predessors and bring in something new that is linked to them.
- Corporate “stumble” – some corporate disaster that leads to the desire to disassociate the company with its previous mistake or scandal
- Consultants advice – Consultants are brought in (possibly as a result of the above points) and advise that a total rebrand is a great idea
- Negative brand perception – Possibly due to point 2 or simply the result of poor marketing there is a perceived need to change the brand to be able to build a more positive image
- Market research – Hopefully a large market research study, which includes a number of types of research from broad surveys to social media listening to focus groups, identifies the need to change the brand. Sadly often the size of the market research study group is far too small or is based on a few focus groups which may not represent the bulk of users, thereby leading to misleading insights.
There are of course many other reasons for rebranding but I think the above captures some of the main ones. Whilst I may be a bit cynical this is because I rarely see rebrands that I actually think “Wow – this new branding speaks to me”, but rather I am often left thinking “erm … why?”. This is in fact one of the big issues with rebranding is that often consumers are left feeling perplexed and sometimes even angry that their beloved brand has been changed, especially if it is a strong, well established brand. There are plenty of examples of failures out there so it does surprise me to still see corporations doing dubious rebrands – and paying big bucks to do so too.
And so I come to a recent rebrand here in Switzerland. The striking, and well known Orange mobile phone brand changed the other week to a bland, dull and mundane Salt. I remember when Orange first launched asking why on earth a mobile phone company was named after a fruit but then I got the striking and strong colour element and the brand grew on me. Now it is a clearly established brand with a strong identity. Why change it? Well let’s go back up to our list and then pair that with the fact that Orange Switzerland was recently acquired by French billionaire entrepreneur Xavier Niel for 2.8 billion CHF- it becomes a bit clearer what could have driven the rebrand. There is also the fact that Orange Switzerland was having to pay 20,000CHF per year for the use of the name. This makes a bit more sense and I see some potentially sound reasoning for a rebrand, but …. why on earth choose Salt?!
Orange Switzerland has gone from a strong, vibrant, dyanamic and energetic brand to a dull, monotonous, everyday commodity brand. Gone is the colour and the energy and in comes the black and white and nondescript condiment. To top of this bizarre branding is the fact that it apparently cost $40 million CHF and a pretty shaky brand switch. As an Orange / Salt customer I had the joy of experiencing my network being down, the Orange / Salt shops shut for 3 full days while they rebranded the shops (3 days? Most of these stores are tiny!) and an overall poor customer experience. Even though I have now been bombarded with very dull rebranding adverts I am still at a loss as to what has happened and more importantly why. Gone is the old strong brand, in comes the dull weak brand. Other Orange / Salt customers I have spoken to here are equally flabbergasted, a few were also seriously inconvenienced with the network issues during the rebranding.
For me branding is really important and if you are going to rebrand at least make it strong, impactful and meaningful, and do not disrupt your customer’s experience during the process! As a paying customer I was so unhappy with this rebrand and the whole experience that I have now switched to Sunrise (that and they had more flexible contracts!). Perhaps if there had been some clear communication around why there was rebrand and what it actually stood for – including what corporate culture and ethos the new brand brings – I may have seen some sense in it all. As it stands all I see if $40million CHF of wasted money and the birth of seriously non-descript brand.
My first response when I have a customer complaint or question is to go online and direct a tweet to the responsible company with my issue. I have been doing this for quite a few years and it is great to start seeing some real improvement in customer service response via social media. A few years back I followed this approach when my Karen Millen shoes broke and ended up having to find the head of ecommerce’s personal email in order to get a response.
Fortunately since then I have had some amazingly rapid, and appropriate responses from customer services via Twitter, most notable from airline companies British Airways and American Airlines, who both rock their social media customer service. British Airways has always been fantastic at resolving my issues very promptly, professionally and in a friendly way. American Airlines impressed me with their near-time response when I tweeted to complain about the dreadful transatlantic airplane I had just boarded – with no individual video screens but only the shared cabin screens (can you believe they still fly planes like this on transatlantic flights?!!!). I tweeted to them just after boarding and before take-off I had gone through a small conversation, in which they apologied and assured me that new planes were being brought in – and that sadly they couldn’t upgrade me from there. Whilst they did not resolve my issue they were still extremely friendly and professional in how they handled my complaint – reducing my anger in the process.
So naturally when I got totally frustrated with my Swiss UBS credit cards not working online yet again I vented via Twitter. Being a big international, renowned bank I expected some sort of response via Twitter within 24 hours, especially as this is a big enough company to have a dedicated social media team. Being a bank I also presumed they would be wary of leaving negative comments unanswered given some of the anti-banking sentiment that is out there. However after a couple of days I gave up hoping for a response from them. They had simply ignored my tweet, or so I presumed, and I would need to start looking into finding another bank which had credit cards that actually worked online. Needless to say I was disappointed, both as a customer and a social media enthusiast.
However I had a very pleasant surprise today. I received a call from the UBS customer service team in response to my tweet! The call was very courteous, friendly and apologetic and it restored my faith in their overall customer service. During the call I gave the feedback that they need to response quicker via Twitter. They handled the issue so well via the call it is just such a shame that they dropped the ball via Twitter.
The key takeaway for UBS, and indeed any other organisation, is that Twitter is now a major channel for questions and feedback (both positive and negative) and consumers have certain expectations around corporate responsiveness. There is then the second point that responding via Twitter (where possible) is probably also considerably cheaper than via a call centre. In scenarios like this one, where a customer complains via Twitter, the best course of action is a simple “Thank you for your tweet, we will look into this and get back to you shortly”. This buys the company time to formulate an appropriate response (which may be communicated via Twitter or if appropriate via a call centre). At the same time it acknowledges the customer’s comment and shows that the company (and their social media team) is listening. It is a very simple but effective approach and one that any company on Twitter should really have implemented by now.
I do hope that UBS responds to this feedback and improves their customer response directly via Twitter as the guys working in their call centre and great and it is a shame to see them being let down by such a simple slip in communications.
Having recently joined the job seeker pool I was buoyed by a number of really positive articles talking about how this year is going to see an increase in recruitment as well as a skills gap and employees having more choice and higher negotiation powers. Awesome says I!
There is then fact that I am an expert in social media in pharma, an area that is also growing and where there is a blatant need for more talent. Many pharma companies still have no social media presence, strategy or even dedicated headcount and very few are approaching this main stream communication channel as strategically or as seriously as they should be. This is after all now one of the main communication channels for a large chunk of healthcare stakeholders, from doctors through to patients. This is where people turn to for health information and news and yet many pharma companies are still conspicuously absent from this space.
I was therefore very positive when I left ZS that I would soon be picking from an array of opportunities. However things are not always as they seem! Firstly given many pharma company’s lack of strategic approach to using this channel most of the jobs are at a very junior level – more focused on content management rather than being a strategic leader, relationship builder or internal change manager. Secondly the very fact that many pharma still have this unfounded fear of social media they are also not looking to employ in this area.
This brings me onto my second road block – being “too experienced”. Given the wealth, depth and uniqueness of my experience I am often too skilled, or more to the point too expensive, for the roles available. People always ask what my current salary is and then tend to go very silent and end the conversation. No matter how much I explain that passion for my work and work life balance are more important than salary it seems to be a discussion closer (before the discussion has even begun). That said I recently had a discussion for what sounded like a perfect role for me … until they mentioned the salary which was half my current salary, and less than I was earning over 5 years ago – I am flexible but not going to sell my experience short either.
Things are not always what they seem then. This also goes for other areas in life and in fact is something I have also been mulling over recently. The other day I was walking down Bahnhoffstrasse here in Zurich and saw a very anorexic looking woman on the street. The same day I saw some photos online of some obese women. Prior to my own diagnosis with a thyroid condition I would always automatically have thought the anorexic women “needed to see someone about her mental problems” or that the obese person “should lay off the hamburgers”. However things are not always what they seem. I now appreciate that either of those groups could in fact be dealing with health issues which are having a significant impact on their weight. As a result of my thyroid I put on close to 15kg – and I was a physically active, salad eating slim woman.
I also now know all too well that that friendly, smiling person may in fact be feeling desperately ill, depressed and miserable. Many autoimmune patients, for example, struggle daily with the effects of their disease but put on a brave, happy face for the outside world. They do not want to burden people with their misery or they feel people will not understand and they will lose their friends and will feel even more alone.
So I always remember now that things are not always as they seem. That dream job may take a bit longer to find, no matter how great the market or your skills are. That seemingly happy, or weight-challenged person may in fact be suffering from a horrible disease and may be feeling desperately alone, miserable and in pain. This is why I try these days not to make assumptions and I always try to smile at people. I may be going through a bad day but that person may be going through far worse. My smile may not mean much but I hope it helps make things seem a little bit sunnier to that person.
I have recently started to look for new opportunities and one area I am extremely interested in working in is patient advocacy, especially within a pharma company. As such I have now come across a few job postings and a couple of things stood out as being glaringly missing from most job specs. I extended my search globally to verify that this was not just a European issue but the more I looked the more these glaring omissions became obvious.
The first and foremost is that to date I have not seen a single job spec for patient advocacy roles that actually mention that it would be an additional benefit if you actually are a patient. In fact many of them do not really even mention the patients and being able empathise with patients, and yet to me this seems like a critical element to working in patient advocacy. How can you possibly work in this area without having a good understanding of the patients themselves, and being able to understand not only the rational issues they face but also all the emotional ones too?
Whilst I would not suggest that being a patient (either in a specific TA or at least in some form of relevant disease area, for example being a chronic disease patient) should be mandatory but it should surely be seen a huge added benefit? I previously wrote about Abbvie’s HIV patient advocate who is himself an HIV patient – and how inspiring, and successful, he is. Boehringer also has in the past hired an actual patient to be patient advocate too. Both of these pharma employees bring a core element to their role – they really can empathise with patients and they truly understand all the issues patients go through.
Whilst it may be hard to find a patient in a specific disease area for the role, patients with similar diseases or that go through similar experiences can also bring a greater level of feeling to the role. As a Hashimoto’s patient, for example, I myself know from first hand experience what it is like to have an unusual disease (it depends on which country I am in as to whether I classify as a rare disease patient). I personally understand the relief of finally getting a diagnosis when you know something is wrong but doctors have ignored your symptoms, e.g. being diagnosed with depression with no questions asked and no blood test being taken (I had a thyroid condition and depression was a symptom). I also know the frustration of being dismissed by doctors because on paper I am “fine” – when I clearly am far from being fine.
The other thing that being being a Hashimoto’s patients brings me is empathy for patients with chronic and autoimmune diseases. I know what it is like to have to take pills for the rest of my life. I know what it is like to make lifestyle changes and live in fear of having a set back or getting ill again. I know what it is like to battle fatigue on a regular basis, and having to educate friends, family and employers about what autoimmune fatigue really means (“yes i really do need that much sleep” “No I won’t feel better after a few vodka red bulls” etc.).
As an autoimmune patient I have also learnt the critical role that the internet and social media plays in finding the relevant information and support for your disease, that often your doctors don’t know, and the value of online patient support. Without the internet I estimate it would have taken an additional couple of years to get my Hashimoto’s diagnosis. However many of the job specs I looked at did not even mention social media or the internet as a key skill! Today the majority of patients get their information online, especially if they have a rare or chronic disease. How then can having an indepth understanding of this area not be a core skill? Just because you have experience in dealing with governments does not mean you also have the skills required to advocate for and provide support for patients. You need to truly understand their emotions, their issues and their key communications channels. That to me should be a critical element to a patient advocacy role.
Perhaps though the final element is the importance in having that passion to help patients, and being a patient brings added depths to that passion. I am a patient and one of the reasons I am so passionate about social media is because I am passionate about the incredible impact it has on patients’ lives. I am an autoimmune patient and I am passionate about educating others about this often ignored disease area. I am a patient with an uncommon/rare disease and I am passionate about helping other patients break down barriers to better care and finding better ways to cope such life-changing conditions.
If you are a patient advocate but not a patient can you bring that same passion and empathy to your role I wonder? Pharma when are you going to truly start putting patients at the centre, starting with your patient advocacy roles?
As many of you will know I recently decided to part ways with ZS in order to find a role where I could use of my digital and social media expertise. I have spent years building up the expertise and I am extremely passionate about how digital, and in particular social media, can have an impact in healthcare. Whilst I did some very interesting projects at ZS, and certainly helped many teams with my expertise, there was just not enough projects that really allowed to use and grow my expertise. And so we parted ways and I have started applying for jobs and looking for relevant contract and consulting opportunities.
When I first joined the job market the process of applying for job more often than not involved sending your CV to the recruiter via email. Gradually more and more companies started using online portals, to the extent that now some recruiters will respond to an email with a CV with a link to the portal and ask the applicant to apply online. In theory this is a much better, and more equitable solution. Everyone has equal opportunity to apply and the company slowly builds a database of CVs. The problem is that most of these portals require you to create an account in order to submit your CV.
I don’t know about you but I am up to my eyeballs in log-ins and usernames and passwords. Some portals want you to use your email, others want you to create a username, and they all want a password. I used to try to have a special job portal username and log-in but invariably I ended up forgetting it so when I went back to the said job portal years later it would inform me that I already had an account and would send me my new password – but to an old email address. Then there is the issue of password. We are always told not to use the same password across accounts but I’m sorry I just always forget them so I have resorted to just a few that I use. This is especially true for something I will not use regularly as there is no way I would remember a random password for a random portal.
Today I have been particularly frustrated by one company’s job portal (I won’t name names but it is a medium sized pharma). I logged in, using my now standard username and my standard password. I started to complete the application form but as my laptop is currently being a bit temperamental (it must be the Spring air) I decided to save my progress. This of course then kicked me out and I had to log-in again (why I have no idea – seems like a silly thing to me). But low and behold – as I tried to log in, using the username and password that I used minutes before to create the account, the dratted thing told me that I had got it wrong. Now having only just created the account and having used my standard username and password I knew I had not got it wrong. I nonetheless tried various alternative password options but to no avail. I finally clicked the “forgot password” link and about 5 minutes later (yes minutes not seconds) I received a temporary password and tried again. This time I was told I had been locked out. Fantastic.
In the meantime I received a “Welcome” email to tell me that my account had been set up. From this I presumed therefore that the system they use does not create the account automatically but takes several minutes to do this – which in this day and age I had not expected, but this probably explained why it did not recognise me – the system was painfully slow.
I clicked again on the “forgotten password” link and this time it only took a few seconds for the new password to be sent to me. I am now extremely happy to report that I have regained access to my application. If I should get this role one of the first things I think I will do is have a chat to HR about their system – job applications is a two way thing and if a company makes it too hard or too painful then highly skilled people may simply give up. We often talk about all the shiny new digital tools, like the latest wearable tech, but we should always also remember the importance of getting the basics right. Your digital assets, including your job portals, are often the key place that people form an opinion of your company – do not make them angry or disengaged by not getting the basics right.