Blog Archives

To SXSW or not that is the question

The time is rapidly approaching when tickets for SXSW 2017 go on sale.  This means the time is rapidly approaching that I need to make the decision – do I go again next year, for my third time, or not.

I went to SXSW for the first time in 2015 (you can read my posts about this trip here) and it was one of the most amazing experiences.  In fact it had such a great impact on me that I quit my job to go back to focusing on digital and social media strategy.  It was therefore natural that the minute tickets for SXSW 2016 went on sale I bought one and booked my hotel. I had to go back for more!

As is often the case though that first, amazing, experience was not replicated the second time round.  I think this was in part as it did not have that first-time “wow” – this time I knew what to expect and that first year I saw some truly inspirational things.   That is not to say I did not enjoy SXSW this year but I am not sure it was worth what I ended up paying for it (I left buying flights until the last minute which was a costly mistake and I opted to stay in a very nice expensive hotel).  Then again I did come back with my Galaxy Gear VR headset which is totally cool!

So let’s see.  I still have a few days to ponder on this.

 

 

#SXSW- Wearables: saving lives and improving outcomes

WearablesI recently submitted my proposal to speak at SXSW next year on “Wearables: saving lives and improving outcomes” and the public voting on proposals starts today.  It would be a dream to speak there but I know the competition is stiff so I have all my fingers and toes crossed and will be asking everyone to vote for me!

Picture2If you follow my blog you may have read my posts from earlier this year.  That was my first time at SXSW and I have to admit it was a life changing event resulting in me leaving my job to go back to focus on my true love – digital strategy and innovation in healthcare.  The event was incredibly inspiring,  not only seeing such amazing innovation but also seeing how it could be applied to improve the lives of patients with chronic diseases like myself. As I listened to some of these amazing talks I thought how great it would be if I could also share some of my knowledge, passion and inspiration in this area, and so when my friend Jackie Cuyvers suggested I submit a proposal I went for it!  I was actually interviewed for national TV about the impact of wearables so I thought why not speak about this topic!

I wanted to share want inspires me the most – how technology is having such a huge impact on patient’s lives and the revolutionary changes that are happening in healthcare as result, not just in terms of technology but also in the culture and mindset change.  As an autoimmune patient myself I have a huge amount to thank for the internet, thanks to the information I found that led to my diagnosis, and the improved quality of life, but also in the inspiration from other patients that drove me to be an empowered patient and demand better health from my physicians.  Back then I had got to the point were I could hardly get out of bed any more and had such extreme brainfog I was struggling to complete sentences; I now lead a normal, active life – thanks to the information and support I received online.

wearables3It is this that drives my passion at looking how innovation and new technology can do more for patients and help turn other people’s lives around, or indeed save them.  In January I spoke about how social media is saving lives and now I want to speak about how wearables also have this capability.  Wearables is of course the big thing this year, with a huge swathe of new devices of all shapes, sizes and uses being launched.  The big ones are off course in the “health & fitness” arena like fitbit or new smartwatches such as the Apple watch.  Everyone is talking about them and I have quite a few friends who have purchased new smartwatches to track their sports activities (I myself have invested in the new Swimmo watch).  These devices are fantastic to help the reasonably healthy get even more healthy.  But what about those that are not well or fit enough to run marathons or swim kilometres?

wearables4The real impact of wearables will come in how they are developed and adapted for those people who face real health challenges, whether it be Alzheimer’s or severe Asthma.  Being able to wear a device which provides live support and information or that conatcts HCPs or family in the case of a medical emergency can have a huge impact in improving a patient’s life.  Some options in this area already exist but few wearables on the market have been specifically designed for this purpose.  Right now much wearable tech is focusing on the lucrative “fitness” and consumer markets but once we start to see more wearables being specifically designed for certain diseases then we still start to see some incredibly inspirational outcomes thanks to this technology.

It is on this topic that I hope to head to and speak at SXSW in March next year, with my friend Jackie (who will be speaking about social media listening and the implications of culture and language – think about the British and American understanding of the word “pants”).  I would ask that you please help me achieve this goal by voting for me here by searching for “Fulford”, and don’t let me go alone – please also vote for Jackie too!

For full details of how to vote have a look at this document with instructions that I put together.  The final thing I would like to say is that for every vote I get I will make a donation to my charity Hope for Romanian Strays which works tirelessly to rescue stray and injured dogs in Romania – so vote for me and help stray dogs!

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