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YouTube Healthcare

gotthard-tunnel-trafficLike many of us I have often struggled balancing regular exercise with a busy work schedule.  This is especially an issue for me as my sport of choice was swimming and the only time the pool here in Zurich is not like the Gotthard Tunnel during peak times is mid-afternoon.  I must also admit that even when work does permit my afternoon swim it can be all too easy to find reasons not to go swimming, particularly when it’s cold and wet outside.

We all know however that regular exercise is important – and for me that especially so as I control my autoimmune disease … and contend with my ageing body.  The fitness industry has blossomed as companies cater to this increased awareness of the value of exercise coupled with people’s busy schedules, as well as the increased pressure on us to look fit and healthy (thank you Instagram).  It is no surprise then to see the likes of Fitbit see revenue coming in at over $1 billion, as they take advantage of this dynamic.

It is however not just companies like Fitbit that are benefiting from need to exercise and be healthy.  There are a growing number of online influencers and sports trainers and coaches who are providing services and support to their customers online, for example through YouTube channels and blogs.  It is thanks to these, and today’s technology and the internet, that increasingly means people do not have to pay expensive gym (or pool!) memberships that they never use to get their exercise fix and indeed people no longer need to leave the comfort of their own home to exercise.

In my case it was my discovery on yoga on YouTube that led not only to me adding a new sport to list of hobbies but also led to me now doing exercise at least once a day (but most days twice).  I no longer have to allocate time in my calendar for travel to and from the pool, but rather can just hop on my yoga mat from home and get straight into a session.  Thanks to Youtube, and Yoga with Adrienne, I am now fitter than I have ever been.  Thanks to YouTube I have my own private “classes” at home – free of charge – which I can do whenever is the most convenient time for me.

Whilst we may like to focus on the sexy side of health tech – such as Wearables and VR – it is actually social media that is leading to some of the biggest impact in this area.  It is thanks to platforms like YouTube that we can see a democratisation of sport, where sport such as yoga, is no longer just for those who can afford to go to classes or gyms, but is now available to anyone.  The convenience that guided home exercise also makes this type of sport more accessible as people can fit their exercise routine in around their busy day – and not around when the classes are or when the gym is open.

We often hear about the negative side of people staying at home surfing the web – but here is an example of the positive side to this.  I for one will be forever grateful to YouTube, and Adrienne, for providing me with the option of practicing my new sport from the comfort of my home which not only helped me through a difficult time but also has helped me maintain my health … and keep my weight down.

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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