Blog Archives

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.

J&J Blog_1.png

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.

J&J Blog_2.png

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.

Pharma social media – what’s changed

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!

 

Social media in the pharmaceutical industry

This week I had the immense pleasure of attending SMI’s Social Media in the Pharmaceutical Industry conference.  As always I enjoyed the event, catching up with many of the #hcsmeu twitterati and hearing insights from the industry and patients.

SMI SlideThe event started for me on Tuesday as I led a workshop looking at how pharma can successfully engage using social media (you can find my presentation here).  With a small group we discussed some of the common issues that we still face in this space, for example internal barriers, lack of adequate process and poor understanding of this channel.

Most of these issues have been around for many years now and it does sadden me that they still need to be addressed in so many pharmacos.  On the other hand it is great to be able to have a much richer and deeper set of case studies to use in the battle in bringing some of these barriers down.  “We can’t because of regulations” clearly no longer cuts it – regulations have been clearly shown to not be a barrier.  Another element that appears to still be an issue, and which saddens me greatly, is the view that social media does not need to be approached strategically.  Whilst I am a huge advocate of pharma companies getting involved in social media I do not condone or recommend doing social media for the sake of it.  There does need to be a clear strategy and plan – otherwise you are just taking pot shots in the dark – and frankly doing any form of business, marketing or communication without a strategy is just plain old bad business.

I was very  happy however to see on Day 1 of the conference Stine Sorensen from Lundbeck discussing strategy, and not only its importance but the importance of having a regularly updated strategy (in this case she updates it every 6 months).  I was also very happy to hear Stine mention that she now has the review & approval time for social media content down to 25minutes.  I have had quite a few clients tell me that 24 hour approval times are unrealisitic so it is great to be able to counter this with the fact that quite a few companies now have process in place for near-to-live response.  Not being able to respond very rapidly due to inappropriate review & approval process should no longer be a barrier (and mini self plug – I can help you work this out).  In fact Stine supported everything I always say – there is no longer any room for excuses around not doing social media.  Those days are gone and, as her slides so beautifully shows, excuses are useless!

smi16_7

Another great presentation was given by my friend Jackie Cuyvers, who recently left ZS to set up her own social listening company.  Jackie is an extremely experienced social listener and she now specialises in doing global / local listening.  Besides flagging the importance of asking the right, business questions, she talked us through some of the implications of social listening, in particular some of the linguistic and cultural elements that we tend not to think about.  She mentioned how even in the same language there are big differences across countries and groups in use of terminology.  In the UK for example “pants” means something quite different from “pants” in the US (underwear versus trousers) or the term “good crack” which means different things in the US and Ireland.  She also made the point that just translating content directly often totally overlooks cultural nuances and local idiosyncrasies. In English for example we use the term “kick the bucket” but in Slovenia the translation of this term would be “whispering with crabs”.  This has potentially huge implications on companies running social listening research, especially if they are dependend on pure technology or English language researchers.  I also loved the fact that Jackie got an image of a dog into the conference – tres social!

smi16_8

Jackie’s summary of the 3 steps to social listening

One emphasis that came through throughout the conference though was the importance of patients and the incredible role they play, and the huge value that social media brings to them.  The event was actually kicked off by three fabulous ladies, Birgit Bauer, Silja Chouquet and Marlo Donato Love who shared some great insights from a patient’s perspective and mentioned one of my favourite quotes “patients are the most underutilised resource in the pharmaceutical industry”.  They talked about the importance of getting patients involved and the role they can play in working with pharma.  Silja then also went on to talk about patients participating and “attending” medical conference virtually via social media.  In fact she raised the point that whilst doctor’s are the main participants online at conferences patients are also increasingly getting involved as they search for more information on their conditions.  She also made some great points about the futility of pharma’s current approach to using promoted tweets and how this is potentially going to be a big issue resulting in dilution of high value content on Twitter.

Perhaps a highlight for me though was Trevor Fossey  who talked us through the impact of digital on patients and the NHS.  I was nearly crying as he told us that he has access to his NHS medical record online, and that of this wife for whom he cares, and that as of 1st April every NHS patient has a right to access their medical record online.  OMG!  As a UK patient, with a chronic autoimmune disease, not having access to my medical records has been a big issue.  I have been to numerous doctors, privately in the UK and abroad, and have never been able to show them my NHS blood results as I did not have access to them.  Of course the fact that I now live abroad and don’t have a GP means in all liklihood I still won’t be able to access them but the realisation of what this means for other UK patients, including my elderly parents, was profound.  Trevor mentioned some fantastic points about how impactful empowered patients really are – and how much money they save the NHS.  I can tell you I was certainly not the only person in the room blown away but Trevor’s presentation – despite being a room full of digitally savvy people none of us where aware of our right to access our medical records online.  Trevor found himself a whole group of advocates at the event (I for one have alreay shared to news to all my UK friends and family).

There were so many other great presentations, such as Letizia Affinito who showed us some great non-pharma case studies, and Pinal Patel from BMS who showed us how they are using social media in clinical trials – and more importantly how they are listening to patients and adapting their process in response to patient feedback.  An awesome point was made that often once a trial is over patients are just left alone – but really we should be thanking them and sharing the results with them (something BMS plans to do now thanks to feedback).  Charlotte Roth from Actelion also gave the Corporate POV around social media, bringing an additional dimension to the conference, while Liz Skrbkova shared perspectives around multi-channel engagement and online influencers. I also have to add that IMHO Liz was one of the best dressed ladies at the event 🙂

Last but not least was the pleasure of meeting all these amazing people and having some great discussions, including over wine and dinner.  Dinner also gave me the opportunity to catch up with a couple more of the #hcsmeu and the next day I was able to sample some of the most amazing cocktails at the Alchemist in the evening.  Afterall what would a social media conference be if it didn’t include the “social” bit!

SMI16_10

Cheers!

 

 

 

 

 

All I wanted for Christmas …

This time of year is often a time of reflection.  It is a time of thinking about what you really want for Christmas – what items go on that famous Christmas list.  What are the things you would really love Santa to bring you – and being Santa you can wish for whatever you want.

This year there were some practical things on my list – including an electric blanket  and a pasta making machine (both of which I got – yay!).  There were also though some wishes and hopes on the list.  I have one wish every year and that is for donations and miracles for the dogs in the Bucov shelter that I support through Hope for Romanian Strays.  With now over 1500 stray dogs living in the shelter (with an original capacity for 700 dogs) and of those over 300 puppies, there is never enough funds to help them all.  The authorities do not provide enough food for that many dogs so it is up to us, and our supporters, to provide the additional food and care to try to keep the dogs alive.  There are constant medical and emergency cases, like newly born puppies or injured dogs dumped at the shelter gates – essentially being left there to die.  My wish did partly come true as thanks to some generous supporters and fundraising the dogs did get a Christmas meal.  This is of course a drop in the ocean but at least they did not go hungry on that special day.

29.12.15

Puppies in the Bucov shelter getting their Christmas meal

My other Christmas wish this year relates to work.  Having left ZS in March I have gone back to working as a freelance consultant, culminating in an extremely busy December.  However with my contract coming to an end in January I am again looking for the next opportunity.  Whilst I would love the stability of a permanent job, the reality is there are not that many permanent roles for someone with my level of expertise and seniority.  I also have such a huge passion (and depth of experience) for my area of specialisation (healthcare digital and social media strategy) that I have no desire to even consider anything else (except perhaps animal rescue!).    I do also love the flexibility that working as a freelance brings and so I am putting feelers out again for some more contract work.  As always it is a balancing act between finding new opportunities and meeting the requirements for the current contract – and this is one of the down sides of freelance work.  I will have to start looking for the next opportunity whilst working flat out on the current contract – and find time to rescue dogs and take care of my health and personal life. I’m tired already just thinking about it!  And so I make my wish and I hope that one of my tweets or posts ends up fortuously in front of the right person at the right time and I end up with a new contract for 2016.  Fingers crossed ….

Linked to the above wish is another work related wish – a new laptop in the shape of the new Mircosoft Surface Pro.  Sadly this is not a wish that Santa was able to grant this Christmas because Microsoft decided that Europeans are second class citizens compared to the US and that we have to wait 6 months to get our hands on this new shiny gem.  My wish will have to continue being a wish only until March when I hear the Surface Pro will finally go on sale in the UK.  Annoying.

My final big Christmas wish of course has to be health related.  If you follow my posts then you know I have an autoimmune disorder called Hashimoto’s.  I think most patients with autoimmune disorders wish for improved (or at least stable) health.  When I am happy and love what I am doing (and get plenty of sleep, eat well, etc.) I have no issues whatsoever with my condition.  Sadly if I get over-stressed, sleep badly, or slip up on my food (e.g. eat something with Gluten in) I end up feeling pretty pants.  Of course I plod on but there will always be a wish for that magic pill to come along and make life easier – or indeed cure my condition.  That will stay a wish for a long time though as that is unlikely to happen!  My other, more realistic, wish therefore is that more people are educated about the reality of autoimmune diseases, including doctors.

I got to spend my Christmas this year with my family, including my brother who is a GP.  I was really saddened to hear that he had no idea the impact gluten (and diet in general) can have on patients with autoimmune diseases.  I am not sure if he took my gluten free diet that seriously – I suspect like many doctors he felt that just taking my pills should be remedy enough.  This makes me sad as I know the difference lifestyle makes on quality of life, and disease progression, for many patients with autoimmune diseases, but if doctors do not provide information or even support in this area then life just gets that bit harder.  There really is nothing more frustrating that having your condition dismissed by your doctor – or indeed your online research either.  Yes there is a large amount of incorrect and bad information online, but there is also a huge amount of life changing, accurate information out there.  The fact that some of this comes from patients makes it no less valuable or accurate.  Afterall how can a healthy doctor really understand what living with an autoimmune condition feels like and who are they to judge how we feel if we make lifestyle changes?  And so I wish that more doctors listen to their autoimmune patients and try to understand their needs and conditions better.  I wish more autoimmune patients had access to a great doctor like I do here in Switzerland.

If I could have my wish for a healthy 2016 and a new contract or opportunity to come true then I can also help make my first wish come true – I would be able to make a large donation to my charity and thereby rescue the lives of more vulnerable, neglected dogs in Romania.  So should you hear of any opportunities (perm or contract) then do let me know … and you can do your bit to help my wishes come true!

 

29.12.15-4

Sahsa – one of Hope for Romanian Strays rescues guarding the Christmas food for the shelter dogs – and looking very festive in the process!

 

 

Things are not always what they seem…

Job-Seeker-0111Having recently joined the job seeker pool I was buoyed by a number of really positive articles talking about how this year is going to see an increase in recruitment as well as a skills gap and employees having more choice and higher negotiation powers.  Awesome says I!

There is then fact that I am an expert in social media in pharma, an area that is also growing and where there is a blatant need for more talent.  Many pharma companies still have no social media presence, strategy or even dedicated headcount and very few are approaching this main stream communication channel as strategically or as seriously as they should be.  This is after all now one of the main communication channels for a large chunk of healthcare stakeholders, from doctors through to patients.  This is where people turn to for health information and news and yet many pharma companies are still conspicuously absent from this space.

I was therefore very positive when I left ZS that I would soon be picking from an array of opportunities.  However things are not always as they seem!  Firstly given many pharma company’s lack of strategic approach to using this channel most of the jobs are at a very junior level – more focused on content management rather than being a strategic leader, relationship builder or internal change manager.  Secondly the very fact that many pharma still have this unfounded fear of social media they are also not looking to employ in this area.

This brings me onto my second road block – being “too experienced”.  Given the wealth, depth and uniqueness of my experience I am often too skilled, or more to the point too expensive, for the roles available. People always ask what my current salary is and then tend to go very silent and end the conversation.  No matter how much I explain that passion for my work and work life balance are more important than salary it seems to be a discussion closer (before the discussion has even begun).  That said I recently had a discussion for what sounded like a perfect role for me … until they mentioned the salary which was half my current salary, and less than I was earning over 5 years ago – I am flexible but not going to sell my experience short either.

hashimo2Things are not always what they seem then.  This also goes for other areas in life and in fact is something I have also been mulling over recently.  The other day I was walking down Bahnhoffstrasse here in Zurich and saw a very anorexic looking woman on the street.  The same day I saw some photos online of some obese women.  Prior to my own diagnosis with a thyroid condition I would always automatically have thought the anorexic women “needed to see someone about her mental problems” or that the obese person “should lay off the hamburgers”.  However things are not always what they seem.  I now appreciate that either of those groups could in fact be dealing with health issues which are having a significant impact on their weight.  As a result of my thyroid I put on close to 15kg – and I was a physically active, salad eating slim woman.

I also now know all too well that that friendly, smiling person may in fact be feeling desperately ill, depressed and miserable.  Many autoimmune patients, for example, struggle daily with the effects of their disease but put on a brave, happy face for the outside world.  They do not want to burden people with their misery or they feel people will not understand and they will lose their friends and will feel even more alone.

So I always remember now that things are not always as they seem.  That dream job may take a bit longer to find, no matter how great the market or your skills are.  That seemingly happy, or weight-challenged person may in fact be suffering from a horrible disease and may be feeling desperately alone, miserable and in pain.  This is why I try these days not to make assumptions and I always try to smile at people.  I may be going through a bad day but that person may be going through far worse.  My smile may not mean much but I hope it helps make things seem a little bit sunnier to that person.

pizap.com14303911518371

The joys of online job applications

As many of you will know I recently decided to part ways with ZS in order to find a role where I could use of my digital and social media expertise. I have spent years building up the expertise and I am extremely passionate about how digital, and in particular social media, can have an impact in healthcare.  Whilst I did some very interesting projects at ZS, and certainly helped many teams with my expertise, there was just not enough projects that really allowed to use and grow my expertise.  And so we parted ways and I have started applying for jobs and looking for relevant contract and consulting opportunities.

When I first joined the job market the process of applying for job more often than not involved sending your CV to the recruiter via email.  Gradually more and more companies started using online portals, to the extent that now some recruiters will respond to an email with a CV with a link to the portal and ask the applicant to apply online.  In theory this is a much better, and more equitable solution.  Everyone has equal opportunity to apply and the company slowly builds a database of CVs.  The problem is that most of these portals require you to create an account in order to submit your CV.

I don’t know about you but I am up to my eyeballs in log-ins and usernames and passwords.  Some portals want you to use your email, others want you to create a username, and they all want a password.  I used to try to have a special job portal username and log-in but invariably I ended up forgetting it so when I went back to the said job portal years later it would inform me that I already had an account and would send me my new password – but to an old email address.  Then there is the issue of password.  We are always told not to use the same password across accounts but I’m sorry I just always forget them so I have resorted to just a few that I use.  This is especially true for something I will not use regularly as there is no way I would remember a random password for a random portal.

Today I have been particularly frustrated by one company’s job portal (I won’t name names but it is a medium sized pharma).  I logged in, using my now standard username and my standard password.  I started to complete the application form but as my laptop is currently being a bit temperamental (it must be the Spring air) I decided to save my progress. This of course then kicked me out and I had  to log-in again (why I have no idea – seems like a silly thing to me).  But low and behold – as I tried to log in, using the username and password that I used minutes before to create the account, the dratted thing told me that I had got it wrong.  Now having only just created the account and having used my standard username and password I knew I had not got it wrong.  I nonetheless tried various alternative password options but to no avail.  I finally clicked the “forgot password” link and about 5 minutes later (yes minutes not seconds) I received a temporary password and tried again.  This time I was told I had been locked out.  Fantastic.

In the meantime I received a “Welcome” email to tell me that my account had been set up.  From this I presumed therefore that the system they use does not create the account automatically but takes several minutes to do this – which in this day and age I had not expected, but this probably explained why it did not recognise me – the system was painfully slow.

I clicked again on the “forgotten password” link and this time it only took a few seconds for the new password to be sent to me.  I am now extremely happy to report that I have regained access to my application.  If I should get this role one of the first things I think I will do is have a chat to HR about their system – job applications is a two way thing and if a company makes it too hard or too painful then highly skilled people may simply give up.  We often talk about all the shiny new digital tools, like the latest wearable tech, but we should always also remember the importance of getting the basics right.  Your digital assets, including your job portals, are often the key place that people form an opinion of your company – do not make them angry or disengaged by not getting the basics right.