Category Archives: Social Media
One of the main services that I offer my clients is social media coaching and reverse mentoring around social media (and other digital). I often get asked by my mentees what the point of some of the social media channels is. Obviously as a patient advocate I have lots of very relevant examples of the value in healthcare but right now I am also able to share another great value add from social … the “marked as safe” functionality.
I think we are all avidly watching the news of hurricane Harvey, Irma, and Jose, as these forces of nature smash into land. As an active animal rescuer my thoughts go automatically towards all the helpless animals trapped – either because they are strays or because their heartless owners left them to the mercy of the storm (i.e. left them to die). Through my animal rescue work I have also got to know many other animal advocates across the world, including in the Caribbean and Florida.
Thanks to social media, particularly Facebook, I have been able to find out about their last minute rescue efforts and also follow how they are coping with the hurricane. Thanks to Facebook’s awesome “marked as safe” feature I can sigh with relief as one by one they log in and let us know they are safe. One of my Facebook friends has been able to stay in touch throughout the hurricane from her bathroom, as her house slowly got ripped apart around her, all thanks to Facebook. She actually disabled all the apps (to save on battery) and was using Facebook mobile and text messages to another friend in California who posted on her behalf and this way was able to stay connected for all the hours of horror that she went through.
Thanks to social media I was also able to follow the dramatic rescue of dogs from a flooded shelter in Texas, while I was in Bali on the beach. I followed the story unfold as heart-wrenching photos of the flooded shelter with the dogs still stuck in their enclosures emerged. The shelter owners begged for help on social media – they had been left to fend for themselves as the authorities focused on rescuing humans. The call went out for people with boats to help and then for help in finding somewhere to house the 70+ animals from the shelter. And social media responded! I nearly cried when I saw the post that they had managed to get all the animals out – and this is largely thanks to publicity that social media generated.
One animal rescue friend however remains silent – and I have been checking his Facebook multiple times a day to no avail. He is in Puerto Rico and is known as the “cat man of Puerto Rico” for all the amazing work he does caring for over 200 stray cats on the island. His last post was heartbreaking as he had gone out to feed the strays one last time before Irma hit and had no idea when he would be able to get to the cats next and how they would survive the storm. I am hoping it is simply that he is without power and as a result of the infrastructure damage can’t get online to post but as each day passes my concern for Glen and his cats grows.
And so I keep checking … and cheer myself up while I wait to hear that he is okay by following all the amazing animal rescue stories that are filling my Facebook. Hopefully next time one of my mentees or workshop attendees asks me about the value of Facebook I can share the “marked as safe” functionality as a great example … including that Glen was able to let us know how he and the cats survived the storm.
Thank you Glen and all of those who battled tireless through this adverse weather to save the animals – you are unsung heroes!
If you’d like to help with the hurricane animal rescue effort check out the HSUS website
I have been working and mentoring in social media for many, many years now and as part of that have been a very active user … of some platforms. I was a huge Facebook and Twitter fan, followed closely by Pinterest. Linkedin is Linkedin … great, functional but not really “fun”. Then there was Instagram.
Many of my friends are huge Instagram fans but I just never really got it. Instagram was just so all about “me, me, me” and selfies. You couldn’t collect and share images in the same way you can on Pinterest, so what was the point other than to blow one’s own trumpet? Now I did have an account, after all I work in social media, but just like my Snapchat account, I never used it.
Until recently. I casually started browsing Instagram and playing with the app and started coming across travel images. At the same time I also started posting more to Instagram. And so the addiction began!
Actually what I discovered was a magical world of beautiful and breathtaking images from around the world. As I sat in Zurich still nursing a broken heart I longed to get away and travel and Instagram acted as a balm for my soul as well as inspiration and hope for the future. I too would travel and see some of these places.
At the same time I also discovered the draw of checking to see if people had liked my images. The draw of likes to my Facebook posts left me long ago … but here it was again on a different platform! This does of course however support my theory of Instagram being very self-centred – here I was being all about me!
But Instagram is more than that I now see. In fact I am now also looking at it with new eyes as I wonder if I should look to move some of my charity work for Hope for Romanian Strays here. I am also providing a friend who’s just launched a new business with advice on how to grow their Instagram account, which is a learning experience in itself. Each day I discover new things and each day I learn more.
And there we have it … I have become an Instagramer and love it! Instagram provides a window to our beautiful world and turns out to be a marvelous place to roam. If you are on Instagram please pop over and follow me.
The news is currently awash with a spectacular example of a company failing to have any respect for its customers. When #United decided to have a paying passenger dragged off one its planes to accommodate employees, whom the airline felt had more right to be at work the next day than said customer, they showed a total disrespect for their customers. The incident, and the initial response of the CEO, also showed a total lack of respect, and understanding, for the power of the citizen journalist and social media.
The fact that other customers filmed the shocking incident and shared it online really should not have come as a surprise, nor should the fact that it got picked up by the media and went viral. The days of being able to just bury incidents under the carpet are gone. Whilst not all examples of bad customer service go viral it is now a real danger for any company, and as such all companies need to start being much more vigilant to customer complaints, especially when these are posted to a social media network.
The other factor here is also basic marketing. When I did my Masters in marketing one of the things we learnt was people talk more about a negative experience than a bad one. It is also accepted business wisdom that happy customers are more profitable for companies – they spend more and it is cheaper to retain them than it is to gain new customers. The other thing we learnt was that a company can turn a customer with a negative experience into a loyal customer by the way they handle a complaint. It is all about making the customer feel valued.
I have numerous personal examples that support these facts. In fact my motivation for this blog post is not the United incident but my current debacle with Turkish Airlines. Right now I am an extremely unhappy customer and have been appalled at their dreadful customer service. As a frequent flyer with airlines like British Airways I have come to expect a certain degree of customer service from reputable airlines and I had been under the impression that Turkish Airlines also fell into that category but clearly not.
The issue in question was entirely my own fault but highlights the difference between an airline like British Airways and Turkish Airlines. I recently booked my holiday to the Philippines but to my horror a couple of hours after paying for the flight I realised that I had booked the wrong dates (due to still being under the weather with my Hashimoto’s btw). I called Turkish Airlines up immediately to try to find a solution to this. I was greeted with an unfriendly and unhelpful rep who refused to help in anyway. This is entirely at the discretion of the airline as I know that British Airways in these situations give you a grace period of 24 hours in case this happens. Not Turkish.
Very distraught I wracked my brain for what to do as I now faced spending less than 5 full days on the beach for 3 and bit days of travel! I then phoned them back to ask about buying a single ticket out on my original planned date and then using my return ticket as planned. Again I spoke to a less than friendly and unhelpful customer service rep who informed my that this was also not an option. I would have thought Turkish Airlines should have jumped at the option of selling me a second ticket, especially as I am sure the currently climate and laptop restrictions on flights will be impacting their sales. I then complained via Twitter and got a much more friendly and helpful response – they lodged my issue as a complaint with customer services for me. Yay!
But no. I got an email from the customer complaints department that it would now take them around 7 days to get back to me! In 7 days time I had hoped to be in a flight and also needed to organise my accommodation! Why on earth would it take them that long to contact me?! To this day I have still not had a response from them, despite numerous follow up tweets. A swift response would have placated me, even if only to sell me that single ticket, but now days of silence later I am a very irate customer who is telling everyone I know, including some very frequent travelers who fly with Turkish (sorry … who used to fly with Turkish). The window for Turkish Airlines to retain me and my friends as customers is rapidly closing – if they do not want my money I am sure many other airlines do.
This experience contrasts with my other recent travel experience, namely with the Radisson Hotel in Austin. There I also complained about a few issues I had had at the hotel. Their response however was very prompt, courteous and professional. When I complained I really felt like I would never stay in a Radisson again but following their fantastic customer service they have managed to flip the situation and turned me into a loyal customer. I now know that if I ever have issues again I can trust this hotel to resolve them in a positive manner and as a result I will have no issue in picking the hotel over another hotel on my next trip.
I am generally a very loyal customer (last year paying close to £1000 more just to fly with British Airways) and I, like many other customers, am actually quite easy to please. Listen to me, respond to my contact request and treat me like a valued customer who you would like to retain. It is my money to spend and I can easily spend it with another company. Keep me happy, like British Airways always does, and I will tell people about my great experience and keep coming back. Make me unhappy, especially by treating me like you have no interest in my future spend with you, and I will tell everyone I know and take my money elsewhere.
Whilst a single customer may not per se be of interest to the company, their friends, family and extended network may be. As word of mouth spreads across that network, as is the case for United Airlines, you start to see a real impact on revenues. Counter that with the cost of good, courteous and helpful customer service, it just makes good business sense to treat your customers with respect – each and everyone of them.
Within an hour of writing this post I received the following response from Turkish. I have no idea why it took them days to provide a standard response like this. It also does not address some of my issues that I complained about. You can see my response below too. Clearly I will not be flying with Turkish Airlines again and I will continue to advocate against flying with them. If you have had similar negative experiences with them I would love to hear about them too.
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.
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.
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.
Today there was another #hcsmeu tweetchat on the topic of what has changed over the last 10 years, and what will be different in 10 years time. I was really excited to be able to participate in the chat, especially as #hcsmeu tweetchats are what really got me into Twitter and introduced me to a fantastic group of like minded people, many of whom I have become good friends with.
I think we have seen a great deal of change over the last 10 years. Today most pharma companies are on social media, whereas 10 years ago it was still seen as this big scary monster by many of them. Now as to whether they are doing social well that is another question. I think what we have seen is more join, and more engagement, but I think also that some of the pioneers have stalled, and I would say many are just joining a status quo rather than trying to push and pioneer new ways of engagement to benefit patients and other stakeholders. I should not grumble as 10 years ago I dreamt that so many would be active!
However what I would like to see now is more involvement by and for relevant stakeholders. Social media in pharma is still the stronghold of Corporate PR. I question though that given how mainstream social media has become, but also the value it brings to stakeholder engagement, should we not be seeing more medics and patient advocates (working for pharma companies) involved and active? Surely patients want to hear from other patients, and medics want to engage with other medics?
Also talking of engagement, there are still far too many pharma companies which do not really engage, but just use social as a push or PR channel. Novartis’s Facebook is a case in point – they have not enabled commenting to their wall, presumably because they do not want that two way engagement with stakeholders in this channel. Is that wise though in this day and age? What does that say about a company that still does not want to engage with stakeholders via social media?
The other big change over the last 10 years has also been the change in technology. Today most of us access our social channels via mobile phone – and we really are able to engage from wherever we are at whatever time we want. We are no longer shackled to our laptop or PCs. This is particularly useful around congress, and is why we now see more “participation” at congress happening online that at the actual physical event, whilst at the same that participation is being driven by people at the event on their mobiles. Patients now also have access 24/7 from wherever they are to social media support – this could also potentially be truly life saving for some.
So what will change in 10 years time? Technology of course! I think we will see greater use of AI (thanks @Lenstarnes for flagging this one) for starters. I think we will also see a far greater blending across technology, for example the blend of VR with social media (and not just for gaming). I think we will start to see VR social media patient communities – bringing people together in a new virtual world, whether for support or education.
I think, and hope, the way organisations are structured to deal with social media will change. I would love to see patient advocacy teams grow within pharma and see them being much more involved in driving social media (not just participating) as well as social media engagement becoming part of medical’s daily job.
Finally I hope that in 10 years time we are still having great #hcsmeu tweet chats and that that awesome community of people are still there, engaging and chatting. Perhaps though with some new blood to drive new discussions. Will those chats still be happening on Twitter? Who knows but I look forward to being part of the discussion wherever it is!
As I sit here checking out my Facebook page and the BBC news it is hard to get away from the whole Donald Trump thing and the doom and gloom that surrounds his inauguration. As a staunch supporter of the environment I find myself terrified at the implications of a climate change denier running one of the world’s largest polluters, especially as he has filled his cabinet with fossil fuel executives and fellow deniers.
As more and more countries join the battle to try to stop climate change, including China and India, both traditionally countries with very bad records in terms of environmental damage and pollution, it felt like there was some hope and we might be able to turn the tide of environmental destruction and climate change. Much of Trump’s rhetoric has felt very protectionist and isolationist, suggesting an America that can just go it alone without any concern for the rest of the world. Whilst this may be fine for some things, when it comes to the environment and climate we are all interconnected and each country impacts the rest of the world. What Trump does in his Ivory Tower (or indeed any other world leader) has an impact on the death of our oceans and our global biodiversity.
So … this is all frightening and depressing. There also seems to be no way of getting away from all this doom and gloom as everywhere we look the world is talking about Trump. But wait … there is hope! There are people out there battling against the doom and gloom and offering a glimmer of a smile. There are people still sharing funny cat and dog videos! As I watch these I am able to take my mind off the potential disaster that looms. I also find that I do not have to log off the internet and become a digital hermit for the next days to years – there is more out there! In fact here are a couple of my favourite funny cat and dog videos to help in this fight against the doom and gloom:
Laughter aside the above does raise a really important point – how pervasive the internet has become and how global it has made us all. Whilst US presidential elections or large national disasters have always made the headlines, in the past we could just ignore or walk away by not watching TV or reading newspapers. The internet has now made that just that bit harder and it has also turned very national news stories into global stories. Whilst we are all watching the US presidential inauguration there are other national stories that are making global news, such as the Italian earthquake or the IS destruction of Palmyra. The internet has made our world that bit smaller and has made us aware of the impact of some national news has on the world as a whole. Frankly it can be overwhelming and depressing. All the more important therefore that we also share the happy and funny stories. Laughter is critical for our health and we need to balance the bad news with the good, the sad with the happy, and make sure that our internet activity also offers this balance. So go ahead and share that funny video! Bring some balance back into our internet viewing and make sure we continue to smile despite all the world’s woes. But remember … animals can be jerks too!
This week, like thousands other around the world, I have been deeply moved by all the final messages that have been coming out of Aleppo thanks to Twitter. It really has moved me to tears reading these tweets that have been sent from what must surely feel like hell. It is heartbreaking to read these tweets that these desperate men, women and children are sending, detailing the horrors of Aleppo and in many cases saying their final farewells. Through social media we are able to hear their messages, we are able to follow and stay informed about life in this war zone from the civilians trapped inside.
On the one hand this is truly remarkable – especially given the besieged state of the city and the lack of western journalists in the city. Through social media we are able to hear first hand about what is happening – not through the words of professional journalists but by normal civilians trapped in the city. Local self-taught journalists have also been sending out reports, including drone footage of the devastation on the ground. Social media truly is placing the power of reporting news into the hands of ordinary people.
However there are also downsides. How totally demoralising and distressing it must to know that people are reading your tweets, your desperate pleas for help, and to know that you are able to tell people about the hell you are experiencing but to receive no help. To feel so powerless that you resort to sending final farewells out to a big wide world that does not seem to care – that appears to only read but not act.
Similarly as one of those people reading these tweets it is also distressing. I can only read the tweets but I am totally powerless to do much. I can sign petitions or contact my MP and demand action but I know that for many of those tweeting from Aleppo any help will come to late. I also realise that mass global outrage, as seen also through social media, appears to do very little and has not resulted in governments stepping in to stop this slaughter.
I only hope that those sending those tweets find some comfort in knowing that we out here in the world know of their suffering and that we hear their plight, even if we are powerless to do anything. I also really pray that those who send those final goodbyes will live to share their stories from safety and will be able to share their stories on social media post war, as they rebuild a country totally ripped apart by a brutal, senseless and disgraceful war.
Finally, being the animal lover that I am I also have to offer a prayer for the “cat man of Aleppo” and all the stray cats he cares for. Again thanks to social media we have been able to follow the amazing work this ambulance driver has been doing. With so much human suffering going on we often forget the animals that are also caught in this hell. They have no voice and no way of sharing their anguish and terror with the wider world. One very brave man though is there to be their voice and to care for them. When many fled he stayed to care for all the abandoned and stray cats showing the most incredible bravery. The pictures that he shares over Twitter also break my heart but there are also some heart-warming ones such as the little girl playing with a kitten that she adopted from him. What will happen to Alaa and his cats? I have no idea but I will continue to follow him on Twitter and hope that their story has a happy ending at the end of all this horror.
This week I saw a really powerful video called “I had a black dog, his name was depression” which was developed by the WHO to talk about depression. Despite this video being a bit “long” at just over 4 minutes I watched it through to the very end. As someone who has had my own issues with the black dog over the years the video really resonated with me.
I have certainly had to make compromises in my life as a result of depression. Whilst people at work have never really seen the impact of my depression, my friends have. This is because when you suffer from depression you work really hard to hide it and to carry on and invariable you have to prioritise your energy. For me work has always won that prioritisation but that means that at the end of the day I had no energy left to meet with friends. In hindsight this may have exacerbated things as I had no one to talk to and just fought my battle on my own.
Today however things are different. Firstly I found out that my depression was actually a symptom not a stand-alone disease (it was in fact a result of my Hashimoto’s, for which I am now getting treatment). Secondly I decided that as someone who works in the healthcare industry I have a duty to stand up and be a voice for patients, to help break down the social stigma and the silence that goes with this, and many other diseases. I stopped making excuses to my friends (I’m busy, I have a cold, etc.) but become open and if I could not go out because of depression I told them. I was amazed at just how many of my friends then also came out and told me they too had had their own battles with depression. We started talking and it often really helped.
The other big change though that I have seen since my first bout of depression in my early twenties is the impact of social media. When I once posted on Facebook about it I had friends PM me to tell me how brave I was but also how it helped them to hear that they were not the only one having these battles. I did not think I was brave – I think I was just being passionate about the my obligations as a patient who works in the healthcare industry.
Social media also provides people with a forum where they can talk to others, anomalously if they want, and get support when they need it. I myself have written in the past about my involvement in talking a Facebook friend down from suicide via a Facebook group. The lady in particular had set up a closed group called “Goodbye” where she shared that she had had enough and had decided to end it. Members of the group included people from the US, Europe and Australia, so we really were able to provide her with 24 hour support. We were there for her and provided her with the friends and support she did not have offline, without which I am sure she would no longer be here today. Social media really did save a life.
The other benefit that I believe social media is bringing is to help break down the stigma and enabling people to talk openly, and show their support. By moving depression out of the dark and into the public domain it can help patients, and give them the confidence to talk to people and seek help. Knowing you are not alone can in itself be incredibly impactful.
Finally another thing to remember about depression is that it is not just a developed world problem. Not surprisingly depression is a huge issue in war torn countries or where people do not have a balanced diet (as is the case in areas of extreme poverty). In these countries however the stigma is still very big around depression and talking about health problems, and here having access to an online resource where you can be anonymous can really have a huge impact. Slowly as more people in these countries get access to the internet we may hopefully start to see technology starting to help improve the lives of patients in these countries.
We still have a long way to go to break down the stigma surrounding depression and mental health but social media is helping. The positive results should be seen not only in terms of patients quality of life but also economically as people get the support they need to be able to function and be productive at work. I personally never took a sick day because of my depression but I know many people who have. Reducing those sick days would be another great ROI for social media!
The fabulous Hope for Romanian Strays guest blogger Don has vanished! Can you find help him? He decided to take a Face-cation (a vacation from Facebook) but we now need him back to help with the charity birthday celebrations! We need your help to keep an eye out for him and share your photos of Don if you “spot” him – perhaps during your own vacation somewhere – being sure to include #WheresDon and the Hope for Romanian Strays logo in your photo too (#wheresdon).
This fun little campaign actually has a more serious side to it – we want to raise awareness of the Hope for Romanian Strays brand as the first part of an awareness campaign for our charity. Hope for Romanian Strays is a small, volunteer run, charity that rescues stray dogs in Romania. The campaign will be rolled out in a couple of stages, with #WheresDon as the first stage. This will be just one of the many initiatives we are launching for our 4th birthday, and was in fact inspired but a few complaints from some very active offline supporters who believe very strongly that the use of gamification and humour are totally inappropriate in the serious world of animal rescue. The fact that many large charity use these techniques successfully appears to be invalid. They do the most amazing work offline I might add and whilst they do not respect the work I do online I certainly respect the work they do offline.
So do you want to help us find Don and get him back in time to help with our birthday celebrations? I hope so! All you have to do is use a tool such as Pizap to photoshop Don into one of your own photos, such as a holiday snap, also add our logo (very important!) and the text #WheresDon. Once you are happy please share away tagging or mentioning the charity. If you like you can also use other relevant hashtags like #animalrescue etc.
Or perhaps if you “can’t find Don” you would prefer to photoshop in one of your own Romanian rescues? That’s fine too as long you include our logo and #WheresDon in the photo!
So please get busy and join the hunt for Don! Let’s see if we can find him and raise some awareness for Hope for Romanian Strays and at the same show that there is room for other ways of raising awareness and funds and that gamification and humour can in fact have a positive impact for a charity. Of course if you would rather just donate money to the charity instead that’s great too – the charity paypal is email@example.com! Just mention #WheresDon when you do so we know that this worked 🙂
This morning I spotted an article in The Telegraph about how patients may have been fitted with faulty hip replacements due to a manufacturing error at the De Puy plant. According to the article De Puy is not being exactly responsive in answering questions on this and may have known about the problem for some time. Ill fitted hip replacements can be very painful for patients and can even be a patient safety issue.
For me a few things sprung out of this issue. First and foremost no healthcare manufacturer should ever ignore potential patient safety issues and if De Puy knew about this flaw they had a duty of care to their patients to inform the regulators so that said patients could be closely monitored for potential problems. We were all appalled by the recent car scandal where manufacturers lied and tried to ignore a manufacturing fault – but if De Puy did knowingly ignored this problem then they too deserve the same villification, if not more. After all here we are talking about surgically implanted devices not cars – and a potential direct risk to patient safety. After the healthcare’s efforts to address its reputation problems I will also be disgusted if this turns out to be another example of “big bad pharma” (whilst De Puy is a device company it is owned by pharma’s J&J).
Shocked at this news post I naturally went straight to the company’s home page to see if there was more news. Afterall if I were a patient or had a member of the family with a De Puy hip joint I would presume that the company has posted something to their website to provide me with information. I would also do the same if I worked for the media btw. I was therefore very shocked at what I found on their website.
According to their website they are inspired by us (I read that as including patients) and listen to patients and yet there is no option for patients on the website! As the image below shows they are only interested in HCPs, job seekers and vets. What about the poor patients? And indeed what about the general public and media?
In this day and age not having a general information website open to the public is questionable to say the least. This is doubly the case for devices which do not face the same strict regulatory requirements as pharma. Now clearly HCPs are the company’s main stakeholders, which is fair enough, but with most people now turning to the internet for information, including patient’s friends and family, it seems ludicrous not to offer up some general information about the product that is going to be surgically implanted into the patient. My mother is likely to need a hip replacement in the near future and I will want to know all the details about the product, including the manufacturer, and I will visit their website and expect to find information there.
This is of course also an issue today with new of a faulty product hitting the news. How can I trust a company that is apparently selling faulty hip replacements but refuses to acknowledge its end users the patients? How can I trust a company that refuses to communicate with me – even if only to tell me that due to regulatory requirements they cannot share certain information?
The other thing I did was to check their Twitter handle – again an issue like this raises questions I want to ask the company via my medium of choice, i.e. social media. Whilst it looks like someone has secured the Twitter handle that is as far as it goes. Whether it is De Puy or someone else who owns this is unclear but either way this looks bad on De Puy. Firstly if someone else has secured the handle then shame on De Puy for not having noticed this and resolved this issue. If it is their handle then at least take ownership and make it look formal and just state that you have not launched it yet. As it is it just further adds to my bad impression of De Puy.
I know I am just an insignificant carer and my mother just another patient but I for one will be talking to my parents about this and suggesting that if their surgeon suggests a De Puy product they ask for other options. I for one do not trust this company to insert a device into my mother. I wonder how many other carers and patients will feel the same as a result of today’s news and today’s lack of transparency from De Puy?