Category Archives: Facebook

Thank you Facebook for the hurricane updates

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.

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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

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J&J strikes gold … and ignores it

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.

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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.

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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.

Social media & breaking down health stigma

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!

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Can social media cause a miracle?

Last week I wrote about the hopeless task I faced in trying to find homes for 60 Romanian rescue dogs who were about to lose their shelter.  I truly did not think we could save them.  I certainly did not think we would be able to find places for the very traumatised ones – who would want to give a traumatised dog a 2nd chance?  I thought perhaps we could find a few homes for the sweeter gentle ones.  I hoped that through social media we could find those few places and maybe raise enough funds to rescue these poor dogs.

Then the ball started rolling.  A few more people joined the group and offered help.  All of a sudden we had an offer for 15 places in a shelter in the UK!!  My heart stopped – could this really be happening?  This would be truly amazing!  Sadly hurt ego’s resulted in this offer being withdrawn – we were gutted.  But we got back to looking.  Slowly more offers poured in.  A couple of dogs were offered a place with one shelter and couple more were offered a place with a foster and a few lucky ones got offered forever homes.  Now just over one week later we have found places for 32 dogs!  I would never in my wildest dreams have thought this possible.  I am totally utterly humbled by the out-pouring of offers of help.  Thanks to the power of social media we have managed to pull of a near miracle.  Thanks to people all over the world pulling together, sharing these dogs photos, posting on their walls, tweeting and ringing around we have managed to save the lives of 32 dogs in less than 10 days.

However in order to make this a total miracle we need to find homes for another  15 dogs and we need to somehow raise funds to cover the cost of transport.  The cost per dog is €120 prep fee and then around £150 for the transport.  A few dogs have been sponsored or their adopter are paying but for all the rest we have to pay.  That is a very large some of money.  So again I am hoping that social media can truly bring about this miracle.  If by sharing and posting we can find 40 people to sponsor one dog or 80 to sponsor half a dog and if by sharing we could find 15 people who could home one of these dogs than we will truly bring about a miracle.  So I ask each and everyone of you to share this post.  Donate if you can and let me know if you can help any of these dogs in anyway.

You can donate via Youcaring here or via paypal to me: pharmaguapa@hotmail.com (and if you are donating for a specific dog please let me know.

 

Dogs that still need homes are listed below.  Please share for them!

 

Basil - a lovely waggy-tailed chap who also has impaired vision due to illness

Basil – a lovely waggy-tailed chap who also has impaired vision due to illness

Greta - a very sweet lady with impaired vision due to an illness.

Greta – a very sweet lady with impaired vision due to an illness.

Tantalic - an old boy, scared but with a heart of gold

Tantalic – an old boy, scared but with a heart of gold

Rex is a great chap - he is scared of men and strangers but find with the ladies

Rex is a great chap – he is scared of men and strangers but find with the ladies

Max - another great chap with a gorgeous smile.  He is wary of strange male dogs but otherwise a chiroy little chap.  He is around 2 years old

Max – another great chap with a gorgeous smile. He is wary of strange male dogs but otherwise a chiroy little chap. He is around 2 years old

sweet LUPITA, 4 years old female, she was crying when we found her . She is dominant with some dogs over food. Friendly and loving to people, she barks at strangers as has a protective instinct. 18 kg 47 cm high castrated

sweet LUPITA, 4 years old female, she was crying when we found her . She is dominant with some dogs over food. Friendly and loving to people, she barks at strangers as has a protective instinct. 18 kg 47 cm high castrated

Lea - dog on the left - very sweet 3 year old castrated lady. Lovely and not aggressive.

Lea – dog on the left – very sweet 3 year old castrated lady. Lovely and not aggressive.

Indy - a gentle giant.  Indy is a large lady around 3 years old with a lovely character - a total sweety

Indy – a gentle giant. Indy is a large lady around 3 years old with a lovely character – a total sweety

Griutu 1, a scared 5 year year old boy. Let's show him there's is more to life that Romania and find him a place to grow old free from fear. He deserves a home.

Griutu 1, a scared 5 year year old boy. Let’s show him there’s is more to life that Romania and find him a place to grow old free from fear. He deserves a home.

Griutu 2. An old, quiet boy who will not survive on the streets - we need to find him an urgent retirement home - old dogs deserve a chance too and certainly do not deserve to die in pain on the streets. Help us find him a home

Griutu 2. An old, quiet boy who will not survive on the streets – we need to find him an urgent retirement home – old dogs deserve a chance too and certainly do not deserve to die in pain on the streets. Help us find him a home

BRIANNA, a beautiful dingo-like lady, sterilized, around 2-3 yearsold. Sometimes she has big mouth on her but she is a total softy, not aggressive with humans at all. This adorable girl needs a home urgently

BRIANNA, a beautiful dingo-like lady, sterilized, around 2-3 yearsold. Sometimes she has big mouth on her but she is a total softy, not aggressive with humans at all. This adorable girl needs a home urgently

This chap has gone through so much - can we prevent him going through more pain?

This chap has gone through so much – can we prevent him going through more pain?

A happy waggy tailed dog soon to die miserably on the streets if we do not help

A happy waggy tailed dog soon to die miserably on the streets if we do not help

Griutu - an older chap who is a little scared but with some TLC will make a wonderful addition to a family

Griutu – an older chap who is a little scared but with some TLC will make a wonderful addition to a family

Pharma and social media

I was asked by a twitter friend if I could provide some articles or examples of some of the things pharmaceutical companies are doing these days on social media.  I thought why not do one better and just write a post about it?  I am always using Boehringer Ingelheim as an example of best practice in social media and in my mind they still are a leader but other companies are also now doing great things in social media.  So I had a little perusal on Facebook, Twitter and other channels and have pulled together some of my favourite, none Boehringer, examples from recent efforts.

 

GE31. GE and Pinterest

I though I would start with Pinterest which is one of my favourite pastimes when I am traveling and is often overlooked as a channel by pharma.  I love Pinterest because it is so visual and I find it rather fun to post pictures quickly on my mobile while I sit on the bus. Pinterest also happens to be a great platform for driving traffic which I feel is something that pharma overlooks (and do not get me started on pharma and traffic driving failures!).  GE has a fantastic Pinterest board covering a range of subjects relating to the organisation.  t GE Healthcare does not have an active account itself there are numerous boards within the GE account dedicated to healthcare.  I personally find it interesting to see them in with other non-health boards – it is rather like browsing in a bookshop when you stumble upon something you were not looking for but find fascinating.  Just like a bookstore GE’s Pinterest account is worth visiting because of the number of “books”, i.e. images, there is always something to find.  Many pharma have very concentrated, small boards, so once you have visited you have pretty much seen it all.

GE I also really like the GE pins as they are very much in line with the image GE is trying to convey and they are successfully integrated with their various campaigns like #GetFit. Many of the pins provide useful information and statistics around a disease but they also have a great board called Pinspire and one called Cancer Pintherapy which are full of inspirational content and quotes.

Learning for other pharma: start being more active on Pinterest and share more of your visual content via this channel.

 

 

 

2. Roche and Twitter

Whilst Roche may not be as engaging through their twitter feed as Boehringer is they do share interesting scientific content.  This reflects the company’s culture and focus on science and gives them a clear image on Twitter.  There are tweets targeted at patients, for example linking through to their oncology Pinterest board, but for the most part their tweets are about the science.  The whole look and feel of their Twitter account also reflects this with an image of scientists emblazoned across it.

Screenshot from @Roche

Screenshot from @Roche

What I particularly like about their approach is that they are very clear in the purpose of their twitter feed and who they are targeting.  This is a business account targeting scientists and medical professional first and foremost, followed by healthcare journalists and scientifically inclined patients.  Despite this strong leaning towards the science they still manage to keep the tone of the tweets friendly and they do engage, responding to questions or tweets directed at them.  Another noteworthy thing is the number of tweets – they are often tweeting multiple times a day and using relevant # which is great, in particular because this is still not always being done by some of their competitors.

Learning for pharma: Be clear in who you are targeting via twitter and use frequency and # to ensure your target audience is seeing your tweets.

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3. Bayer Diabetes and Facebook

bayer 2Looking in the diabetes space on social media there are some great examples from pharma notably Novo Nordisk, Sanofi and Bayer Diabetes. As a whole I suggest to my pharma clients they should look in the diabetes space to see a vibrant active online community, where patients and caregivers are highly active and pharma are really engaging with some great content.  As such it was a hard call but I decided to go for Bayer Diabetes as in my opinion their Facebook approach is just that bit more engaging and patient focused whilst at the same time targeting a global audience.  It is also notable as its Facebook page is open to commenting, which is still not standard practice in pharma – Bayer is showing that they are open to engaging with people directly and are open to providing answers and resources in response to direct questions.  In fact relating to this another notable element to the Bayer Diabetes Facebook page is how they respond to questions.  I have seen quite a few questions asking about content in different languages and Bayer has responded by developing more multi-lingual content (they currently cover Spanish, Russian, Portuguese and German as well as English).  This to me is fantastic to see!  Many pharma still spew out their social media and look like they are engaging but in reality they are not listening to their stakeholders needs and requests as they do not adapt or alter their content.  Perhaps the other notable thing about these requests that Bayer Diabetes is getting is that it suggests diabetes patients are finding this information relevant and useful if they are proactively asking for it in other languages.  I suspect this is because Diabetes Care is trying to do what they say they do – namely “helping to simplify the lives of people with diabetes, empowering them to take charge of their health and happiness”.  Their content certainly is clearly focused on lifestyle tips (including recipes which were also requested by followers).  They occasionally intersperse the content with disease awareness campaigns but for the most part the content has a clear purpose for a clear target – diabetes patients.

What pharma can learn:  Open up your Facebook and engage – if people ask you direct questions listen and answer them (otherwise why are you on Facebook in the first place?!)

Bayer

 

These are just three nice examples from three of the platforms.  When I have time I will provide my views on Linkedin, YouTube and Google+ but now I have to go back to doing some charity work and saving dogs’ lives in Romania.  I would be interested to know your thoughts on  your favourite pharma social media offerings and indeed GE, Roche and Bayer I would love to hear from you and hear your perspective on your efforts in this area.

 

 

 

 

 

A patient’s point of view

I was recently involved in a workshop for a pharmaceutical product and one element we talked about was the emotional journey a patient goes on, and how digital tools played a role in that journey.  This really resonated with me as a patient.

We are of course all patients at some stage or other, but some of us are patients with chronic or long term illness which require on-going treatment.  In my case I have Hashimoto’s, which causes hypothyroidism, and I will need to take thyroid hormones the rest of my life.  My journey as a patient with a thyroid condition has been highly emotional, distressing and sometimes extremely difficult.

A patient will experience a whole array of emotions as they go through their own journey.  Mine started with joy when I was told I had hypothyroidism – I finally had a reason to my sudden and excessive weight gain.  Unlike in some other conditions I never really felt isolated, in part because I was very open on Facebook about my hypothyroidism, and this resulted in a surprising number of other friends also identifying that they had the condition. I also initially did not have many problems, it was only in the last year or so that things got worse and it was at this point that I would have been in danger of feeling very alone with my condition had it not been for Facebook.

As my condition and health deteriorated, the journey became more emotional and more distressing.  I put on weight again, felt lethargic and was constantly tired, and I felt depressed and low.  I was very miserable.  I also got increasingly desperate.  As an educated woman, working in the healthcare industry, I knew that something was not right with my health – something was wrong.  As per my previous post I received absolutely no support (informational or emotional) from my then doctor.

In the days of old I would have been totally alone at this point in my journey.  I would not have known that it was not right that I was feeling this ill. I would have been totally dependent on my doctor’s response (good or bad). I have no idea how I would have coped with the despair, the depression and the fear (and believe me thinking that you may spend the rest of your life feeling exhausted and listless is very frightening).

Fortunately today we have the internet and social media.  It really was a game changer for me and my disease. I already knew that my symptoms were common for hypothyroidism but what confused me was that I was already on a very high dose and should have felt fine and full of energy.  I was terrified of lowering my dose and feeling even worse (and putting on yet more weight) and yet this is what my blood results indicated I needed to do.  I was also scared that it was just me – that other patients coped fine and it was just my body not working properly.

Through a support group on Facebook I very quickly found out I was not alone.  In fact far from it.  It turns out there are many patients on treatment but having issues with their health, their symptoms and their doctor’s response to their concerns.  It was such a huge relief to find out I was not alone and to have fellow patients to share my story with and to be able to connect with people who felt exactly like me.  The emotional support that this virtual engagement provided was immeasurable.  I no longer felt alone and the feeling of despair went down as I felt there were answers and there was hope.

It was through this support that I found the strength to question my previous doctors’ response and seek further treatment.  I paid, out of pocket, to see an endocrinologist in the UK and I armed myself for that appointment with as much knowledge as I could, from the internet, in order to ensure I received the optimal treatment for me.

My appointment with Dr Morris was like chalk and cheese compared to the Spanish endocrinologist.   He was supportive, listened to me and provided some solid advice, which included bringing my dose down.  The way he advised me took some of the fear out of lowering my dose.

The rest of the fear was taken away because, through my online searches, I had found out that in a very small minority of patients being on too high a dose can cause the same symptoms as hypo even though they are hyper.  Turns out I was one of this small minority.

The other thing Dr Morris did was confirm what I had suspected – my hypothyroidism was caused by Hashimoto’s disease.  Following the Spanish endocrinologist’s failure to tell me what was causing my hypothyroidism I had gone online and done my own research using my blood results.  Through this research I had self-diagnosed Hashimoto’s but it was also great to get it confirmed by a physician.

Armed with this confirmed diagnosis I did more research.  Through support groups and blogs I found out that most Hashimoto patients have some form of gluten intolerance and that eliminating gluten could help improve health outcomes.  Not one of the doctors I had spoken to over the last couple of years ever talked to me about my diet and the impact lifestyle changes could have on my disease.  It was only through interacting with other patients online and doing my own research that I found out about the changes I needed to make to my diet and lifestyle.

As a result of my online research, I now no longer eat gluten and I have reduced the amount of goitrogenic food such as cabbage.   I am also very careful about getting enough sleep and staying healthy.  The impact this has had has been huge.  I feel relatively normal again now, and whilst I still get tired easily I no longer feel depressed or listless.

My emotional journey has now come to a point where I feel confident and hopeful.  Some fear still remains, for example how my need for ten hours sleep will impact my work and the fear that I may feel ill again in the future.  But for now, thanks to resources and information I found online, my main emotions are relief, happiness and hope.   I do not know where my patient journey will take me to next but I am certain I will find the support and resources I will need online.

Sunrise after a dark night

New hope after the despair – just like sunrise after a dark night

The birth of a new social media platform – Furiends

As per my previous post there has been a huge uproar on Facebook among the pet owner community as Facebook started deleting pet profiles.  One interesting result from this has been the birth of a new social media network, Furiends, set up by the owner of a dog whose profile was deleted from Facebook.  So far it looks great, and mirrors the Facebook functionalities – and it has been designed specially for all the pets whom Facebook has rejected.

There are a number of interesting elements here.  Firstly there is the fact that, yet again, Facebook has demonstrated a total lack of interest in what its users, and in this case a particularly active bunch of users, want.  It has ignored the petitions and the pleas.  It has also failed, as per usual, to communicate any clear reasoning behind this latest move.  It never fails to amaze me that a business built up on user engagement and relationships fails so miserably to engage and respect relationships.  It is rather noteworthy, IMHO, that the Facebook Facebook page does not allow for people to post directly to the wall but only comment on posts. I would have thought that Facebook of all the companies out there should have this functionality enabled to encourage the engagement on which it has been built.

The second noteworthy thing here is that pet owners, through their pet profiles, are a particularly active and engage group of users.  One of the reasons I tend to use Don’s Facebook page over my own is not only that it is more fun and interesting but also because people still engage, comment and have conversations on Facebook.  Some people argue that this is one of the signs of Facebook’s “beginning of the end” – the fact that people are no longer as active and as engaging as they used to be.  People are now splitting their time across platforms – each of which competes for a slice of our time and engagement.  Yet here is a group who blows engagement numbers through the roof! This group posts daily, comments can run into double numbers on a regular basis – just for a “bog standard” post.

This point leads into the next point – that from a revenue point of view you surely want to encourage people to stay on your platform and visit as often as possible.  You want to encourage these sorts of loyal followers – and not through them off!  When you are seeing other groups becoming less active you want to do all you can to encourage the groups that are still highly active.  You want to listen to them and make them feel welcome – not start shutting their accounts down.

The final point is that behind the pet profiles you have owners who are willing to spend money on their pets.  You have a clearly labelled audience who are sitting on your platform and who are open to spending money for their pets.  Given that one element of Facebook’s revenue generation is advertising and that the more accurately targeted the advert the better one would have thought were you have a group with a very clear, stated interest would be a god-send to Facebook.  I know from personal experience but also from many, many interactions with other pet owners and “pets” on Facebook that we are interested in seeing adverts for pet products and we are interested in buying pet products over the internet.  The only adverts I ever really click on are when they are accurately targeted at me – and on Don’s page they invariable are not!  Don’s adverts seem to be a random selection of adverts for men (Don is masculine so I get that) and other bizarre stuff (like a recent add in Arabic for some film festival).  If they were targeted at what Don really is – a cat – chances are I would not only click on them but also buy the odd thing too.

Rather than removing pet accounts, and alienating their owners in the process and cut off a potentially lucrative revenue stream, why doesn’t Facebook just simply introduce a “pet” tick box and actually enable, and encourage, pet owners to be open and engage even more on Facebook?  Instead what has happened is that Facebook has enraged a large, and active group of highly engaged and passionate users.  It has closed a door on an opportunity that now lies open for Furiends to grab with both paws.

Furiends has been set up as a refuge for all these Facebook refugees – set up not to make money but to welcome, with open arms this community.  To provide a safe refuge for these highly engage, committed and loyal group.  This is a social media network that is founded on the pure principles of engagement, based on the elements that make social media so special.  It is a network that is very open and human in it’s about us section – apologising that it is set up by one person and there will be problems.  It is a network that is actively asking its users for input – and I am sure will be reacting to this input.

I am honoured to have been here for the birth of this network, and I am excited to be part of something that potentially will be fantastic, and finally provide something other than Facebook for me and my friends.  I also think, if this small network reaches out to all of us pet owners, and asks for help, we can build up a great platform, with a steady revenue stream, and a very happy, engaged user group.  I have been a very loyal Facebook user for years (after all I do have two accounts!) but I think finally I have to join on the bandwagon that says Facebook has had its day.   It is time for the next generation to grab the opportunities that big networks like Facebook are ignoring, and I am happy to be part of one of these communities.

 

Over a 1000 users by day 2

Over a 1000 users by day 2

 

 

What the heck is Facebook playing at now?!

If you have been following my blog and also my charity blog, www.hopeforstrays.com, you will now that my cat has a Facebook page.  You may also have read about what a huge support these pet Facebook pages can be to people, including vulnerable or sick people in need of support.  If you follow my cat Don you will also now what a difference his account has made in raising awareness of animal cruelty issues and charity fundraising – Hope for Romanian Strays could never have raised over €1000 at our last auction without all the support from the “cats”.

One of Don's posts for Hope for Romanian Strays

One of Don’s posts for Hope for Romanian Strays

You can then imagine my horror when a couple of days ago I started hearing rumours that Facebook was doing yet another purge of pet profiles.  This has happened before – apparently because they are deemed “fake” profiles – but fortunately it never turned into a fully blown issue.  This time however to everyone’s horror it is really happening.

Through my cat’s Facebook page I have made some amazing connections and formed genuine friendships.  My cat’s page has also enabled me to join health related support groups where I may want to remain anonymous.  The other real tragedy of what Facebook is doing however is how much charity work and awareness raising goes on using pet profiles, and Don’s page is integral to the work I do for Hope for Romanian Strays. In fact I rarely use my personal profile anymore, but do most of my Facebooking through Don’s page – I get more interaction and more value from my cat’s page than from my own.

I know I am not alone in this.  Many of my “cat” friends also now rarely use their “human” accounts and have defaulted to using their pet accounts.  There are many reasons why this happens, but I know of at least a couple that feel they have to have a personal account for family and old friends, but they do not want to share and interact with these people in the same way they do with their more genuine, and caring, friends they have met through their cat profiles.  I for one do not want to mix my personal and my cat friends – they are two very different groups and I have two very different objectives for using my Facebook profiles.  I discuss things with my cat friends that I do not want to share with some of my business friends who I have on my personal page.

With this in mind you may then understand the anguish, horror, and huge amounts of anger, as we have now started to see some of our dearest friends being removed from Facebook simply because their profile was based around a cat and not them in person.  A few have been turned into pages – but you cannot participate in a support group as a page, you cannot engage in the same way with you close friends as a page.  We have all invested a lot of energy, love and joy into our profiles and having them removed is heartbreaking.  Today I lost one of my closest friends, Tiggi, thanks to Facebook’s purge.  I have no idea now how to contact Tiggi other than to send her a physical letter.

I am also really worried about a couple of vulnerable people who are in very bad and difficult periods of their lives, and who need our support to help them cope.  They have no similar support system offline, one of them does not want to use her personal page because she does not want her local friends to find out, and without their cat’s Facebook pages they will be cut off, left to deal with severe depression and potential suicidal thoughts, alone.

I understand Facebook’s desire to remove spam accounts but pet profiles are not spam.  These are genuine accounts, being used for genuine friendship and engagement, and legitimate activities.  If Facebook just offered us the option of a “pet” tick box they could easily segregate the genuine “pets” from the spam.  They would also be far better able to target their advertising – which potentially would be a huge financial gain for them.  Currently Don tends to get male or location related adverts which are totally inappropriate and un-interesting.  The odd time however he does get animal or pet related adverts I have a far higher click through rate, and it has led me to purchase items too.  Having asked other pet profiles I know I am  not alone on this. For a listed company always needing to be aware of revenue generation this seems like a blatant missed opportunity for a steady revenue stream.

We are now flocking to other social media platforms in droves.  I can assure you that if Don’s profile goes I will leave Facebook for good.  There are more than enough other platforms that welcome me, and my revenue.

So here is some questions for Facebook.  Why are you doing this witch hunt and attacking legitimate users?  Why are cutting off such a potentially lucrative revenue stream?  And why are you driving us away and forcing us to use competitor platforms?  But most importantly why are you risking people’s health, possibly even lives, through this action and limiting legitimate, and much needed charity activity in this space?  Have you really thought through the damage this witch hunt is causing Facebook both in terms of lost revenue potential but also in terms of image?

I sincerely hope Facebook reconsiders this witch hunt and re-instates our profiles, and in fact takes it a step further and finally acknowledges the huge pet community on Facebook and allows us to finally flag our pet pages and provide us services that meet our needs – which incidentally I suspect many of us would gladly pay for.

And if this post resonates with you and agree that Facebook should not be deleting pet profiles please support us by signing this petition:  http://www.thepetitionsite.com/838/040/777/give-us-back-pet-profiles-on-facebook/?cid=FB_TAF

petition

In the meantime, just in case Don does get removed, you can find me over on www.furiends.com which seems to want my custom.

Don's Furiends profile

Don’s Furiends profile

 

Addendum:  To give you an idea of the missed advertising take a look at these screen shots of the adverts “targetted” at Don’s profile!

poobook poobook2

 

 

 

Vine … it’s all about cats right?

One of the great things about a new job is meeting loads of new people and having some really great introduction conversations. In my case of course the conversation invariably, at some point, turns to my digital expertise. I have always been wary to call myself a digital expert – it is such a huge field and it is constantly evolving so it is very hard to be a genuine expert in this field. There are also so many new apps and “shiny toys” that I myself have not personally used and again I find it slightly false to be talking about something if you have no experience in using it yourself.

It is precisely because of this that I decided to have a go at using Vine. I have heard so much about it but have had remarkably limited exposure to it. I had asked myself a number of questions around its use, such as what the point of it was and whether it is a social media channel or an app? I presumed it would be just like the other apps – and I was not sure I would think much of it.

The result however is that I have had an evening of fun trying to catch snippets of my cats doing silly things! Awesome fun – and as we know cats are the foundation of Maslow’s internet hierachy of needs so purfect! And then once I started sharing these snippets of Don and Ninja (my cats) on Don’s Facebook page (yes my cat has a Facebook page) and the comments started streaming in, it all fell into place for me. Vine was clearly made for cat videos and therefore is an integral part of social media!

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On a more serious note though one thing that Vine very nicely demonstrates is the ease with which individuals can create their own content, without specific skills, and using a simple app and a smart phone. Apps like Vine and Instagram have given each and every one of us the power to create dyanmic audiovisual content which we can share. This is a great power but it is also a great opportunity for budget strapped companies. People like to create their own content and they like to share. Companies always need more content. This seems like a match made in heaven. In theory it should be, and each year, as more and more apps like Vine and Instagram are introduced, this opportunity will grow.

The reality is however that many companies who are starting to dabble in social media are not only scared of allowing customers to provide their own content but also thoroughly underestimate the amount of content they will need. This double whammy results in few companies seriously looking into, and planning for, customer content creation. Some companies have dabbled in this with the odd Pinterest board, but very few have fully embraced customer participation and contribution as an integral part of their social media strategy. Will this change? I think it will have to. Budgets will remain tight so seeking out new content sources will only grow in importance. Meanwhile the opportunity to engage with customers and get them to contribute to content will grow and it will become more and more obvious that this is an opportunity that companies need to seize with both hands.

Does this mean that pharma companies social media initiatives will suddenly become full of Vine videos of cats? Probably not! But it does mean that if pharma companies take on board the gift that apps like Vine and Instagram are offereing they will make better use of their budgets, start having social media initiatives with sufficient new content, and be a step closer to building those much touted online relationships.

Turning KOL into KOI

As I mentioned in my previous post most Pharma companies have a great idea of who their offline, traditional KOLs are but very little idea of who the Key Online Influencers (KOI) are.  They also rarely have any real idea of how many of their offline KOL are active online and using social media.  Pharmaceutical companies should have a far better understanding of the online activity of all their key stakeholders, including KOI but also KOL.

The reality is that most top KOL, who tend to be older, are not that active on social media, but they also would see little value in spending their time with social media.  They are extremely busy and have already reached the top of their game – for them social media may be a waste of time.

Younger, up and coming KOL however are another matter.  Whilst they may not be digital natives they are more adept at using digital resources and some may also already be using social media.  This group is also trying to reach the top and expand their name within their field and the healthcare industry.  To this group, social media can be a valuable tool, enabling them to extend their reach and influence, and giving them a leg-up to top tier KOL status.

This is a huge opportunity for pharma.  KOL have always played a key role within the industry and building relationships with KOL is standard practice.  One of the core elements to relationships of this nature is being able to bring value.  Helping up and coming KOL building their “brand” online and helping them turn themselves into KOI could be a hugely valuable resource that pharma could offer this group.

So could a pharma company go about working with up and coming KOL around their use of social media?  Absolutely! The first thing to do, as with all initiatives, is to do some research.  Identify who the up and coming KOLs are (the chances are this has already been done by Medical) and then find out if they are active online, and if so how and where.  Also find out whether their name already has digital klout, even if they are not themselves online.

 

kol

 

The next step is then to reach out to them and find out if they would be interested in social media training.  The key element here is to communicate the value to them and ensure they understand that this would be a totally neutral training, with no expectations of them to start tweeting information about the company.

At this point I often get asked about how to set this up internally, process-wise.  The reality is that this process generally already exists.  Companies often do media training with KOL and social media is a form of media so the same process, with a few amendments, could be used.  It should be relatively simple to offer KOL social media training, either as part of their media training, or as a stand alone training.  In fact given time pressures, and some potential reticence on the part of the KOL to participate, it is probably more effective to do a quick intro to social media as part of the media training, and then offer an additional social media specific training as a follow on.  This initial session can be used to demonstrate the value of social media to the KOL personally.  A follow up session can then delve into more details and provide more hands on practice.

The final element to remember is to be realistic regarding timing and ROI.  Do not expect every KOL trained to become a KOI – start with conservative KPIs (for example 1 in 10 trained per year will become active on social media).  Also remember to be realistic with timing – becoming active on social media does not happen overnight – allow at least one year for the KOL to fully master social media and to start seeing some impact from the training.

This training could however have a great positive impact, for the KOL, the pharma company but also for other stakeholders such a patients.  As the KOL becomes more fluent and adept at using social media they will move towards becoming a KOI, ensuring good quality information becomes prominent in their field.  From the pharma company’s point of view if the digital information they produce and share is of good quality and of value  to the KOL, and their followers, the result will be more impactful digital assets with a greater reach.

Finally of course is the fact that this whole process can act as a great way to build, and strengthen, the relationship with that up and coming KOL, so that when they do reach the top the company has played a pivotal role in supporting them and being there, as a partner.  And of course let us not forget that eventually all KOL will be KOI anyway, it is just a matter of time – this opportunity exists now but will not exist in a few years time!

 

Thank you to KOL / KOI Dr James Underberg aka @Lipiddoc for his insights into this post.