I’m an autoimmune patient and I want you to hear me

I am very open about my disease and the painful journey I have had to go through to get my health back.  It is because of what I went through that I am now so passionate about educating anyone who will listen, and it is because of my journey that I am so passionate about social media.

However I also find it so frustrating working in an industry that does not listen to it’s core customers – indeed often does not consider patients as a customer.  I work in an industry that emblazons its websites with words around patient centricity but in reality does very little for its patients.  I work in an industry that has huge teams dedicated to marketing and communicating to doctors but only has small teams (sometimes a single person) dedicated to patient interactions and communications.  How can we as an industry talk about caring for patients when we do not even resource our patient advocacy teams appropriately or hire patients to be part of those teams?  I have already written about the fact that to work in patient advocacy for a pharma company you need to have experience in working with governmental agencies but not in social media and not as a patient.  Surely patient advocacy teams should include actual patients?!

Whenever I have the opportunity to share my story with pharma teams they are often blown away by my passion and by what I say but sadly I feel like nothing changes.  I feel as an autoimmune patient our voices are just not being heard by the very industry that often saves our lives.  I am frustrated as an autoimmune patient that our voices are not being heard because many of us do not have a terminal disease like cancer or a visible disability.  We are not dying but we are suffering.

Many of us are surviving but not “living” – we battle on in silence, we suffer in silence, and we often carry on being stigamtised because what we have is not understood or visibly obvious.  Just because you can’t see our pain does not mean it is not there.  Just because we do not have big patient associations behind us does not mean we do not exist. Just because we have a chronic disease that will not kill us does not mean we are okay.  We battle on but we want to be heard and there are more and more of us out there.

I am passionate about raising awareness for autoimmune diseases because I am an autoimmune patient.  I am passionate because time and time again I meet another patient, or friends and family of an autoimmune patient, and I am struck by the same stories we share and by the fact that often we seem to be ignored.  Just because we are not dying (or at least not quickly) or because physically we look healthy does not mean we are not suffering.  Just because our conditions are not always fatal does not mean we should not be heard.  It is time for our voice to be heard.

It is time for us to stand up and tell the world that it is not okay – we are suffering and we need support.  We need support to fund research to find answers.  We need support to help make people understand that not all disabilities are visible.  We need support because frankly when we have a bad day it is the equivalent of your worst nightmare but we persevere – and often in silence.  We are so much stronger than you could imagine but we are also in desperate need of your support.

All we ask is that you hear our voice and support us in our daily struggle – because together we can fight these diseases and together we are strong.

 

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Watch out pharma

Today in one of my mentoring sessions we were looking at the use of Artificial Intelligence in the pharma industry.  This in itself is a fascinating area to look at but equally fascinating was the discussion the topic generated – namely the changing dynamics of the healthcare industry and the pharmaceutical industry’s continued snail pace of change.

As we looked at some of the new players entering the market, such as AI startups like BenevolentAi or the big players like Google and Apple, we discussed how pharma is starting to miss increasingly large value opportunities in healthcare, which tech companies are seizing.  Whilst currently much of the pharma industry still remains clearly in the domain of the pharma companies that may change in the future as the industry fails to adapt to changes being driven by technology.

Looking at AI & clinical trials for example – currently clinical trials are very clearly the domain for pharma because of the huge financial investments required but also because of the need for highly skilled and experienced people to work in this area.  However as AI makes inroads, for example in molecule identification, what’s not to say that non-pharma companies might look at this area and bring in their technology expertise and just hire / poach the expertise they need to run the trials … or indeed just outsource to the CRO?

This article also gives the nice example that technology will increasingly play an important role in treatment and if tech companies find that the pharma industry is the bottle neck to their products what’s to prevent them just buying their own way in to the industry?  Once this happens pharma could potentially face major issues as all of sudden their direct competition no longer comes from another slow, cumbersome pharma company but rather an agile, dynamic and fast moving tech company.

And this leads on to another factor that is also hindering the industry namely how cumbersome and slow the internal systems and structures are.  Even when a pharma decides to partner with a start up (which is happening but IMHO not as much as it should be) often the clash between the two cultures proves a major obstacle to the success of the partnership.  While  a startup will expect to move quickly – and may need to move quickly due to limited funds – they then find themselves with a partner who may expect things to take years (by which time the startup has run out of funds / has lost key people / etc.).

Many people in pharma argue that due to regulations this is a totally different market and it is the regulatory environment that hampers speed I would push back on this.  Time and time again regulatory constraints is bandied around as an excuse when it should not be.  The length of time it takes for a pharma company to draft and sign off a contract or agreement with a startup for example has very little to do with the regulatory environment but rather with the internal systems and staff.

Another cultural aspect that differs between pharma and tech companies – and again which is only partially linked to the regulatory environment – is the right to fail.  Traditionally pharma, like many other industries, will only launch or release something when it is perfect, which contrasts with the tech industry which focuses more on agility and adaption.  Many tech companies will launch something as a beta version – so not final – but will then adapt it based on feedback and data.  Whilst this approach may not be appropriate for the actual pharma products there are many other parts of the industry that would benefit from this approach.

So will we be losing our jobs to the likes of Google and Apple?  Probably not in the near future but if pharma companies continue to only adapt at a snails pace it will become less of a philosophical debate and will move closer to reality.  And what is certain is that as pharma tries to deal with increasing costs and prices pressures if they do not start to look at the full value picture of the healthcare industry they will lose out on potential new revenue and value sources – and there are plenty of non-pharma companies lining up to grab this value.

 

Monday motivation

One of my main activities at the moment is supporting clients set up and run Reverse Mentoring programmes.  As part of this one of the things I do is lead and support groups of Mentors, many of them digital natives, and part of this includes building and driving an online community for them.  Today I thought of starting a Monday Motivation stream and as such I was looking for motivational quotes.

As you can probably imagine the internet is full of motivational quotes – but I actually found quite few were far from motivational.  Many of them essentially were telling me to work hard if I want to succeed – not rocket science but I do not find being told I need to work hard that motivational either.  For me the motivation is what is driving me to work hard – hard work in itself is not the motivation for me!

I also found some of them could also have a detrimental effect, particular on the younger digital native Mentors who are just starting their careers.  Some of them imply that if you only work hard enough you will succeed and everything will be okay.  From experience I know that sometimes no matter how hard you work at something it still fails.  I also know that sometimes you simply cannot work that hard (for example due to ill health) – what do you then?  Does that make you a failure?

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But what about when talent does work hard?  Where does that put you if you don’t have talent?

I think far more helpful for my young mentors is to understand that working hard and trying is important but also to understand that if your heart is not in it, or if circumstances are unfavourable, you may not succeed … and that that is not the end of the world, as long as you can pick yourself up and move on.  One of the most valuable lessons I have learnt is to accept that there are days, or bits of work, that just do not go well – and that I should not blame myself (well unless of course it really was my fault!).  I learnt that sometimes it is okay to just sit back and take a breather.  Sometimes it is okay to have a lazy day.  Sometimes shit just happens – and you will need to find your own way to deal with this, whether it be taking a sofa day or hitting the gym or working harder.  Dwelling on what went wrong to try to find the lesson to learn (because these quotes tell us to learn from the bad) sometimes is just not healthy or productive – sometimes we need to just accept, close the door and move on.

I also learnt that sometimes you just have to work through the bad – and that it will not get better no matter how hard you work at it so you have to find ways to motivate yourself through it.  Hard work does not always lead to success but is part of life.  You need to find your own personal, and ideally non-work related, thing to motivate you through the bad days, whether it be a holiday of a lifetime or that new dress you want.  You also need to balance your motivators with big things (the holiday) as well as small short-term achievable things (such as the dress).

Finally working in reverse mentoring I think it is also important to understand that what drove success 10 years ago may not be the same thing that drives success today or that will drive success in 10 years time.  The meaning of “working hard” and how we work has changed considerably, and will no doubt continue to change.   In the past working hard might have a meant a 9-5 day working in an office but today it could mean more flexible schedules and working remotely.  Today’s leaders will need to start leading differently to deal with the changing dynamics driven by technology and societal change.  Whilst we need to learn from past and existing leaders, equally today’s leaders need to learn from the younger generations because that is where future success lies.  That is what makes reverse mentoring such a valuable tool – and this is what motivates me to work hard in this space.

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YouTube Healthcare

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

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

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

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

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

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

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AR versus VR

This morning I was reading about the difference in opinion between Apple’s Tim Cook and Facebook’s Mark Zuckerberg on whether AR or VR is the future.  In my opinion they are both the future in their own different ways and for different audiences.

As an owner of a Samsung Gear VR I have to say that I think VR is pretty cool and can imagine it will only get cooler with newer technology.  The opportunities for VR are huge, from gaming, to education to healthcare.  I particular like the way VR is bringing hope and relief to patients, for example through sensory therapy for burns patients (the use of VR therapy during bandage changing saw a significant reduction in pain).

Currently though VR is still somewhat the domain of gamers and tech “geeks” like myself.  With the advent of cheaper headsets this may change but will VR ever become a mass market concept?  There I am not sure given the “isolationist” nature of VR – namely that you have a headset on which immerses you in the VR world but at the same time can “remove” you from the real world and real contacts.  I am not sure I can imagine the masses sitting around in their own world with their headsets.

AR on the other hand exists in the “real” world, being simply augmented over reality.  AR offers benefits in the same fields as VR, namely gaming, education and to a degree health too.  However the lack of full immersion can also make AR less impactful that VR.  What AR does offer however is the merging of technology and real world in a way that people can potentially enjoy together.  AR is no longer a new technology though and we also have not seen it take off to follow the hype that surrounded AR a few years back.  We also see AR still being used by individuals in their “own” worlds like the Pokemon gamers.  This could of course change with new uses and versions of AR, and AR could become something used by the masses in their daily lives, either individually or in groups.

Both technologies offer great hope and opportunity but in my opinion both will always remain more for the young or tech savvy rather than technology for the masses.  Both technologies have been surrounded by masses of hype that, to date, has not lived up to expectations.  I suspect both these technologies will slowly become part of the norm in certain situations, such as in sensory therapy in hospitals, quietly and without great fanfare, while much of the hype will vanish or move onto the next new technology.  But who knows ….

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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Well hello #Instagram!

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.

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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.

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Sexy sunscreen

The other day I saw this video from Mashable about a new UV patch from L’Oreal that is meant to make applying sunscreen more fun.  Essentially the patch is a stretchable skin sensor designed to monitor UV exposure and can be scanned.  An accompanying app then tells you your exposure, can remind you to apply sunscreen and also uses AR to bring a little character to life (that’s the fun bit I presume).

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This video reminded me of a meeting I had many years ago when I was working agency side.  A cancer charity had approached us to discuss an app idea to try to encourage people to use sunscreen.  Their idea was not disimilar to this concept from L’Oreal (minus the cool patch and AR) – they wanted to develop an app that would inform sunbathers of the UV levels and thereby get them to apply sunscreen.

The only problem was their target audience was young men and they did not understand their customer.  They had presumed that knowing the UV levels, and subsequent danger and risks of skin cancer, that these young people would automatically apply sunscreen.  They were aghast when I, a sun worshiper, flipped it round and told them that this data could be taken to be when the best time would be to get the maximum tan.  I also challenged them that this app would never be used by an 18 year old on his first trip to Ibiza – unless his mum downloaded it for him and kept nagging him.

We then brainstormed around what it would take to get said 18 year old to apply sunscreen.  Warnings of skin cancer and health certainly were not going to work.  I came up with a very novel idea – partner with the big clubs and use sexy models. The concept was simple – have sexy models roaming the beach with sunscreen and get the guys to take photos and submit them to an online space.  The clubs could co-sponsor and thereby get some extra positive publicity.  The 18 year olds would learn about sunscreen from someone other than their mum and would, for that day at least, be safe – and hopefully thanks to the models sunscreen might become sexier. The photos would generate content and hopefully also buzz and with some careful promotion and PR had the potential to become a viral campaign.

Of course this idea never took – it was far to riskee for healthcare at the time and certainly for the conservative team from the charity.  This was of course a shame but it also speaks to a broader issue – namely really understanding your customers and taking risks, two things pharma is not always particularly good at.  There have been so many brilliant ideas, that would have benefited patients and would no doubt have been highly successful, but that die because the marketing teams involved are risk averse and conservative.  It is also this issue that has led to pharma’s dominance in healthcare being slowly eroded by risk taking, modern organisations like Apple and Google.  Until we can instill that same culture within the industry Pharma risks falling behind and not optimising all the opportunities that today’s cultural shifts and technology present.

 

The era of digital nomads

In December one of my main client contracts will come to an end and as such I have been slowly starting to think about what I will do next year.  Much as I love living in Zurich it is a very expensive place to be based without a permanent job so I am toying with the idea of moving somewhere cheaper.  Having also just had my heartbroken by a Swiss chap I am also less happy here than I was and contemplating a move.

Traditionally people would move based on where their job is and for many the first move abroad is the result of a job offer.  This was true for me too – the first time I moved abroad as an adult was an office transfer from the McKinsey London office to their Zurich office.  Since then I have become a veritable frequent mover and have lived in Switzerland 5 times, Spain twice, Denmark once and London twice.  Most of the moves have been work related but not all, and not all by choice.  Some would say I’ve had my fair share of bad luck with work – redundancy, the brand I was working on failing in PhIII, interview & reality not matching up, etc. – but I like to think of it as good luck.  It is thanks to my luck that I have had this truly interesting career, with a breadth of highly relevant experience, with multiple organisations and in multiple countries.

It is thanks to this experience that I am also able to seriously consider not only what my next job will be but also seriously think about where I want to work.   Unlike when I started my career, today,  thanks to the blend of my experience, area of expertise and technology, I can contemplate moving anywhere in the world.  I no longer need a fixed office or a permanent 9 – 5 job or even be based in the same country as my work / client.  I can seriously consider becoming one of a growing number of digital nomads.

This freedom and flexibility is behind the growing number of people becoming digital nomads.  Many of them are millennials not yet ready to settle down and wanting to travel the world but there is a growing number of seasoned professionals, like myself, who place increasing value on this freedom and flexibility.  Whilst many of the jobs these digital nomads do are as developers or content creators, and not always particularly senior, times are changing.  One of the roles I do for example, reverse mentoring, I can do extremely well remotely (in fact it is sometimes easier to share a screen remotely rather than squish around a physical screen in a room together) – all I need is good wifi.  For other work that requires me to be face to face it is generally easy enough to hop on a flight.  In fact it may even be cheaper for clients to have me working as a digital nomad, and pay for the long haul flight, simply because I can charge less per diem if I am based somewhere like Thailand as opposed to Switzerland.

Whilst being based near a beach does sound wonderfully rosy it is not without its drawbacks.  I am actually quite a settled, homey person, and would never have chosen to move jobs or countries this often by choice.  However this is the deck that I was dealt and I now also realise that life is short and that home is where you make it.  It is also thanks to my autoimmune disease that I have learned to truly value my quality of life.

Whilst I do not see myself being an endless digital nomad at this point in my life I feel it may be a good move for me.  I am still young  and healthy enough to do this.  There is still much of the world I want to explore and new skills I want to learn (like free-diving) but I do not have the resources, or inclination, to take a gap year and just travel.  I would like to continue working but travel – the classic digital nomad.  Who knows where I will end up – ideally with a permanent job somewhere near a beach 🙂  – but I feel ready for a new chapter in my life and a new journey.  And so I am starting to explore my options as a digital native, and in the process replacing the hopes and dreams I had with my ex with new hopes and dreams, and in doing so help my heart heal.

 

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Facebook campaign versus page

I recently had a conversation with a friend about what good looks like in social media, driven by a positive article about Allergan’s US Restasis Facebook page.  The article talks about the Restasis brand’s foray into social media through this page and what great results it drove.

Naturally I went to have a look at the page but must admit that I do not agree with the article’s rosy glow.  Yes it may have had good results at the time but closer inspection reveals some serious flaws in the brand strategy regarding their approach  to social media.

The most glaring issue is that this is not a page but a campaign.  Looking at activity on the page it is clearly time framed around six months.  Since January this year there has been next to no activity.  The brand has gone from posting regular content, driving traffic to their savings programme or other relevant material, to posting only three posts since January 2017.  The content on the page is very clearly targeted and clearly driven by customer need, i.e. issues around how to pay for treatment, and for the most part drives to the brand website.  Within the six month period the team have done a good job at responding to and answering questions, which gets a big thumbs up and demonstrates the understanding that this is a two way engagement channel.

However the strong campaign focus coupled with the lack of recent content really flags this as a lost opportunity to me.  Rather than build a whole page, with a key purpose to apparently drive patients to the Restasis brand website, my recommendation would have been to focus activity and investment in promotion.  By this I mean the focus should just have been on placing targeted adverts, including on Facebook, to drive that traffic.  Building up a whole page simply for a six month campaign, rather than a concerted effort at driving long term engagement and value, is a wasted effort.  It also brings with it additional risk and work due to the need to monitor 24 / 7.

Another recommendation I would have would be to focus on building up and improving the corporate Facebook presence, which is currently lacking and confusing.  As a first step I would close the unofficial Facebook page which seems to be more of an employee forum but includes people replying to patient questions and issues.  Now I have no idea of those people replying are authorised to do so but I would not be surprised is they are not.  This is of course a huge risk to organisation but could be turned into an opportunity.  There are clearly people passionate about the organisation prepared to engage on behalf of the organisation – these people could be trained and used to support the official activities.

For that to happen though there needs to be official activities!  There is no official, professional corporate Facebook page, just some brand pages, and in this day and age I find this somewhat dated.  By having a strong corporate Facebook page it would also provide the opportunity for brands, like Restasis, to have somewhere to post content (which can be geo-targeted to handle regulatory issues).  It would also formalise and help control the discussions that are already happening – by not having a presence it does not mean that people are not talking to and about you.

To me this Restasis Facebook page, and Allergan’s approach to Facebook, is suboptimal and the sort of activity I would have expected from Pharma a few years back.  Today however the approach to social media really needs to be more strategic, serious and based on a solid understanding on the value, uses and impact of the various platforms to both customers and the business.  Today social media is a mainstream channel that can provide high value to both customers and the business and needs to be handled as such, and not as an “experiment” or “foray”.  Embrace it, optimise it and reap the benefits.