Author Archives: Pharmaguapa
Why social media is critical to rare diseases
Imagine feeling constantly sick or in pain. Imagine going to doctor after doctor but still not receiving a suitable diagnosis or any idea of what is wrong with you. Imagine being told you are making it all up or it is all in your head. Imagine your life as this never ending litany of discomfort and pain with no hope in sight. This is the life of an undiagnosed or misdiagnosed patient. This is the reality faced by many rare disease patients, who on average wait 5 to 7 years for a diagnosis.
Imagine now that you find someone who feels like you do and understands. Imagine finding someone who has gone through the same symptoms and issues. Imagine finding answers and support. This is what social media has enabled.
Before social media rare disease patients, and their families, often lived in isolation, with no contact to anyone else going through the same thing. If they were very lucky there might have been a local patient association, but often they did not even have access to this. They had very few people to turn to for support or answers. They had very little power.
Today’s technology has changed this – enabling patients and their carers to connect with each other. To turn to each other for support and answers, but also to get critical mass to drive action for their disease. It is empowering patients to not accept the status quo and keep fighting for answers and diagnosis. Social media is having a positive impact in reducing diagnosis time for patients, in connecting them to clinical trials, and in helping to cope and live better with their disease. In some cases it is also enabling access to medicines and funding clinical trials.
It is also helping doctors get answers by providing them with access to global experts and other doctors who may have dealt with a patient with the same rare disease. It is helping them to spot those rare disease patients when they walk through the surgery door. It is also helping doctors to better support their patients.
For the pharmaceutical companies working in rare diseases social media should be one of their highest priority channels. Unlike in other disease areas, in rare diseases each individual patient is incredibly valuable (financially) but can be very hard to find. The delayed diagnosis times costs the industry, and healthcare systems and providers such as the NHS, millions. The delays in clinical trials due to delays in finding those rare patients, also costs a fortune.
Social media supports the industry in finding those individual patients, and connecting them with other patients. It also enables them to reach those doctors actively looking for answers. It enables them to run targeted disease awareness campaigns to help support improved diagnosis. It also enables the industry to better understand the patients and their needs, and in turn better optimise activities. For example understanding the terminology used by patients – including those looking for diagnosis – and where they are turning to for information, can lead to more impactful and effective disease awareness campaigns.
Social media provides the pharmaceutical industry with the most amazing opportunity to connect and learn from its rare disease patients and families, in a way that no other channel has ever been able to do. It is also an extremely cost effective channel to use, and one which can continuously provides new insights.
Despite this however it is still woefully under-prioritised and utilised by the industry. Just looking at the activity on this channel of some of the top players in rare diseases shows a clear lack of understanding of the channel and its impact, both to patients and HCPs, but also to the company. Sadly whilst some of the brand teams may now realise its importance often senior management does not. This lack of understanding means that teams do not have access to the resources, including headcount and training, that they need to succeed in social media.
Often in order to succeed in social media pharmaceutical companies need to increase headcount or prioritisation of activities to the channel, as well as incentivise stakeholders, such as MLR, to co-operate and change their behaviour and timelines. There is also often a need to change internal process in order to enable social media engagement but this too needs support from senior leaders.
What the rare disease industry needs is a concerted push to train and educate senior leaders on the importance and value of the channel. This can be done via traditional training, or more tailored programmes such as reverse mentoring. The benefits of reverse mentoring are that the programme can be personalised to the individual and go into as much depth or breadth as they need and are interested in. Often through reverse mentoring senior leaders have an “aha” moment which in turn leads to positive impact for both the individual but also the organisation, as the senior leaders starts to drive the change needed.
The fact is that as an industry we still have a large amount of change to drive and in rare diseases one of the biggest – and most urgent areas – is around our use of social media. We need to support our senior leaders to drive that change and in the end that will benefit not just the organisation but also ultimately the patients and their families.
The death of a brand
This week I popped up to London for a bit of sightseeing and to catch up with friends from my McKinsey days. A trip to London is also never complete with a visit to my favourite shop – Karen Millen on Oxford Circus. Sadly this will have been my last visit to the store as the store is closing and to all intents and purposes the brand is dead.
I am quite devastated – how did this iconic brand end up sinking so low that this happened? Karen Millen was famous for its tailored, smart business dresses, often using bold colours or patterns. At the same time they always had an element of the classic and of enduring style about them. The quality was also great – I have Karen Millen clothes that are nearly 20 years old that I can still wear (and they do not looked dated either).
The main target market was also clear – it was business women, who wanted to look smart but stylish and elegant with a touch of something different. These were dresses that you could wear to a business meeting or go out in the evening to a posh restaurant in. They made you look, and feel, like a million dollars and yet cost wise the brand with mid-range – not designer end but also not Zara cheap. This was a brand that had insanely loyal customers, who would travel from abroad to stock up on dresses (myself included).
So what happened? First and foremost I believe the new management lost its way and very clearly did not understand the brand’s USP or its target customers. All of a sudden there were less of the iconic dresses in store and more jeans and t-shirts. The style also changed becoming more “trendy” and “edgy” (much of it just plain frumpy and ill fitting). I went from spending 1000s and having dilema’s on which dresses to buy to struggling to find a single item I liked. I was not alone. Every other long standing Karen Millen customer I spoke had the same issue. The brand started to be dropped at foreign retailers such as Globus in Switzerland – a warning signal of things to come.
Employees I spoke with also echoed my thoughts – why would customers pay £90 for a simple t-shirt when you could get the same type thing at Zara for a third of the cost? They complained about having the same conversations with customers time and time again – where was the classic Karen Millen clothing? Why was there a sudden increase in full length evening gowns when smart business dresses were virtually gone?
Karen Millen is a classic business school case study of a brand that had it all and lost it. The brand broke cardinal rules of business – not understanding the business proposition and even more importantly not understanding the customers. They also failed to heed what employees were saying in store – a fantastic source of real world insight and information ignored. Karen Millen went from serving a particular, and potentially lucrative, segment of the market to trying to serve a totally different, broader market. They went from having their own niche, with few competitors, to taking on the likes of Zara. Not surprisingly they failed. The brand has now been bought by online retailer Boohoo – but given their target market I think it highly unlikely they will take the brand back to what it used to be.
I am devastated – there is no other brand on the market that had what Karen Millen had and there is now a definite gap in the market. I mourn the loss of an iconic brand. RIP Karen Millen.
Vintage Karen Millen
I love you NHS but we need to talk
The NHS is like a very dear elderly relative – you don’t choose them, you love them dearly but you are also frustrated by their old fashioned ways and inability to change. It is however really time to have that talk with them because this time something really has to give.
I recently moved back to the UK and despite having experienced excellent healthcare in Switzerland it came at a steep price and sometimes lacked the empathy and compassion that makes me love the NHS (except my Swiss GP who was phenomenal). I have also had the misfortune of experiencing the Spanish (private) healthcare system which not only lacked the compassion and empathy but was downright terrible, unprofessional and borderline dangerous. Having moved back to the UK and the NHS I soon had my first experiences – and run ins – with our venerable old system of healthcare. I have been left in shock at what I have experienced and has led me to say “we need to talk”.
The NHS is our sacred cow that we defend to the hilt and which we love but it has come to a point where the system is so clearly broken that it is time that we moved our sacred cow into newer pastures and gave her a good clean. The problem with sacred cows is that no one wants to touch them and there is the hope that just throwing money at the problems will make them magically disappear. From my experience however there are many small fixes that could be implemented that could start to help resolve some of the issues, and the very least save some much needed cash.
My first experience upon returning home was the lack of digitisation. When I asked my local GP how to get 6 years worth of blood results to them from my Swiss records I was told to print it out and bring it in! I looked at the receptionist aghast and asked if she was joking – she in turn looked at me perplexed, clearly unaware of what a ridiculous thing she had just asked. My response was categorical – if they wanted my blood results they could have them either via email, USB stick or from a location in the cloud. After much consultation I was given an email address to send my data to.
My next experience came a few days later when we had to call am ambulance for my mother in the middle of the night as she could no longer breath. We were told there were no ambulances available but that an emergency medic would call. This took over two hours – by which time my mother might have already died. Fortunately she actually got better and so we followed the medics advice and took her to our local GP first thing … only to be told there were no appointments available and that we would have to take her to A&E ourselves! By this time my mother was feeling perfectly normal again but spent the day on a ward waiting to see a cardiologist (her ECG was slightly off). By end of day still no sign of the cardiologist and not wanted to bed block when she felt fine we asked if we could take her home for the night and come back the next day to see the cardiologist. We were told however that this would mean she would be treated as an outpatient and would have to wait weeks to see a cardiologist. Eventually she spent two nights in hospital, entertaining the ward, feeling totally healthy, and ended up discharging herself on the 3rd day as they still had no idea what was wrong with her.
And here comes my third moment of “WTF” – during her entire stay and during her discharge everything was done on paper! Not a tablet in sight! The nurses station was totally submerged in a mound of paper and even a simple questionnaire was done on paper. Now the NHS has apparently spent millions on upgrading their IT systems … where exactly did that money vanish to?!
So as I look at this sacred cow I realise that it is clearly very sick and needs help. Firstly we should not be having to bed block simply so that someone can see a doctor – the cost of that alone is an astronomical waste of money that could probably fund additional doctors to deal with the increased number of outpatients. Secondly in this day an age there is no excuse for using paper anymore (and let’s not get started on the fact that the NHS still uses fax machines!) – which also costs more. There is more than enough research showing the financial and safety benefits of going digital. There are also now plenty of off-the-shelf products out there that could be used for at least the basics (like that questionnaire). The cost savings of going digital would probably fund the tablets needed (or more doctors and ambulances).
The other thing that annoys me about the use of paper is the amount of waste it generates – both in terms of time (think of that poor sod who has to type up all that paper) but also in terms of environmental impact. Which brings me on to my final “GRRRR” moment with my NHS experience – the excessive waste and use of disposable plastic. Again this would be a quick fix and would surely save the NHS yet more precious pennies. The wards seem to cope fine with re-usable plastic jugs and cups – why not implement this throughout the hospital. And why on earth have we moved to using disposable plastic aprons for the staff serving food? We seemed to cope fine in the recent past with traditional aprons that got cleaned after each use – which have the added benefit that they absorb spills rather than letting the spill drip down off the plastic apron onto the floor.
Despite all these issues, just like that elderly relative, I still love my NHS. Whilst I am in shock at how antiquated it now is and the amount of wastage, the thing that still makes the NHS a world leader is the level of care its staff deliver – regardless of who you are. The dedication and care of its doctors, nurses and support staff is world class and at the end of the day this is one of the most critical parts to healthcare. If only though we could help those amazing people do their job better by supporting them with the use of technology and chipping away at the waste. Our sacred cow deserves more and we should not be afraid to overhaul her to place what she does best at the centre, namely the care of patients – because at that the NHS truly excels, despite all its flaws.
Marketing and Sales – different skills
When I started my career in the pharmaceutical industry I was told I would never work in pharma marketing without having been a sales rep. The fact that I hold a Masters in International Marketing, grew up in the industry (I followed in my father’s footsteps) and brought a range of highly pertinent skills was irrelevant – being a sales rep was seen as more critical to being a successful marketeer than having the right qualifications or skills. I have since disproved this “fact” by spending the majority of my career working as a digital marketeer, in some shape or form, for some of the world’s top pharma companies.
During my career I have fortunately seen a shift in thinking away from this mentality but the sad reality it has not completely disappeared, as evidenced in a job application I just saw for a top pharma. There it was again – listed among the basic requirements of the job spec. In this day and age I cannot for the life of me understand why work as a sales rep should still be a pre-requisite for a marketing role. Far more critical should be a good understanding of basic marketing, multichannel engagement and a degree of creative flair or innovative thinking.
Sadly I have experienced, time and time again, the result of having sales people in marketing roles. The lack of understanding of basic marketing by pharma marketeers, including senior people, is shocking. As I try to support brand teams and companies in developing and implementing innovative multichannel strategies I often have to also train them in basic marketing before we can even consider looking at how to navigate the complex multichannel world we now live in. For example trying to explain to teams how to develop plans and strategies tailored to their customer segments I may discover that their idea of segment actually links to HCP group such as GP or Oncologists rather than actual detailed segments linking to behaviours and beliefs.
In order to be a successful marketeer today you need to understand not only basic marketing but you also need to understand the complexities that digital has driven. You need to be creative and innovative to come up with marketing strategies that actually deliver real impact and engage, and not just be able to complete a brand planning template. Our customers now face so much choice and can simply click away from pharmaceutical content and messages. In many countries the role of the rep has diminished drastically and yet we still have many companies placing an inordinate amount of effort on this channel – and this is not helped if marketeers have been hired because of their sales skills rather than marketing expertise. Whilst reps still play an important role for many brands they are now one of many channels and a marketeer needs to understand the reps role within a more complex and interconnected landscape.
We live in a noisy world where the customer has the power and the choice. If companies continue to hire marketeers who tow the old line they will never see the impact they could be achieving. Our industry needs innovators and people who will challenge the status quo. We need people who will above all else always put the customer in the centre and try their utmost to understand what that customer wants and needs, and then deliver the brand messages in such a way that it speaks to those needs and resonates with those customers. The big tech giants are already investing heavily in healthcare and if pharma companies start having to compete head to head with these companies it is pretty clear who the winner will be unless we change our approach and who we hire. Anyone can learn to fill in a brand template but coming up with successful, innovative strategies that speak to today’s customers is a very different skill that takes talent, experience and a different mindset.
Life is like a mountain
Last weekend, after nearly 9 years of living in Switzerland, I finally made it to Zermatt to see the famous Matterhorn. It was of course stunning, but it also got me thinking how life is a bit like a mountain.
At first it seems like this huge insurmountable obstacle, way off in the distance, but then as you get closer it becomes a challenge that you might just manage. As you move forward and start climbing the mountain, it is tough going. There are times when you question what you are doing, when your resolve waivers and the mountain starts to feel insurmountable again.
But then something happens and gives you the push to keep going. This could be something such as the sun shining through the clouds and the sheer beauty of the mountain filling you with inner strength, or perhaps a friend giving you the encouragement you need. Whilst these external elements are critical to getting up that mountain, without that inner strength and determination you probably will fail.
Once you have got to the top of the mountain there is that sense of elation and achievement – you are the top of the world and can look back at your journey with pride. However sometimes the road down off the mountain is much harder – your drive to achieve something is gone (after all you have made it to the top!), and there can follow a low period as you arrive in the valley with no more challenge ahead. This is when you have to start looking for the next mountain to climb and start your next challenge.
Right now I am about to start up my next mountain. After 6 years of living in Switzerland, mostly working as an independent consultant, I am now packing up and getting ready to move and looking for my next challenge. I have no idea right now what that next mountain will look like or how tough a climb it will be, but after climbing many mountains in the past I feel I have enough experience, and a great support network, to be able to make it up that next mountain.
Ready to climb my next mountain
Full disclaimer – I used a train to get to the top … no actual climbing involved!
Job hunting sucks
In June my long-term contract with Boehringer Ingelheim comes to an end so I have started actively looking for a new role. In case you are not aware job hunting really sucks! One of the main reasons for this, IMHO, is the incredibly painful online systems most companies now use.
To give you a more specific example – I have been trying to apply for a digital role with a certain top pharma through their careers portal … for the last hour but to no avail. The first pain point was trying to set up an account. I always try to use my pharmaguapa email for job applications but apparently the system did not like this email and kept telling me an account already existed, but when I tried to reset the password I was told no account existed with that email account afterall. After multiple attempts I gave in and used my private email to create an account.
Next up came what should be straightforward – actually applying to the role. At first glance I was hopeful as the system looks better than some of the others I have used. However looks can be deceiving and now 1 hour later I have still not managed to get the system to upload my CV and let me move onto the next section.
Sadly I have had this experience all too often. With today’s technology and understanding of User Experience filling in an online job application really should be very easy and straightforward, and yet it remains painful.
I will of course persevere – and in doing so I am aware that if I ever need to apply to this company in the future I will no doubt have to go through the same painful experience – starting with issues logging in (I will almost certainly forget that I had to use a different email address than normal).
Of course if you know of any suitable positions (ideally that does not involve a painful online application!) please do let me know – the sooner I find that new opportunity the sooner I can stop putting myself through this painful process! You can find a copy of my CV here.
AI for Health
I am currently at Intelligent Health’s AI conference in Basel so thought I should write a blog post on the topic. I first got really interested in AI at SXSW a few years ago when I saw the applications of AI in chatbots for patient groups with limited access to care, such as refugees. I have since looked deeper at the topic as a result of the Reverse Mentoring project and believe this is a technology that will really bring huge value to our industry.
One thing that strikes me from the presentations I have seen at this conference is the level of partnerships between pharma and tech companies. This is a trend that I hope we will see more of – big cumbersome pharma companies are not the most innovative but by partnering with start-ups there is a great opportunity to bring new, innovative thinking into the organisation. However to get the full value of these partnerships it would be worth sharing that experience and learnings with a broader internal audience. Too often these partnerships remain within a small team and other people not directly connected to the partnership have no idea it is happening or the outcomes. If we want to drive new thinking in the industry then we also need to disseminate outcomes from these partnerships more broadly within companies.
Another factor that is clearly coming across in this conference is how critical access to data is. Whilst I have heard patients mentioned a few times I have not yet seen anything that is looking at empowering patients to share their data (and full disclaimer there are multiple streams so maybe this was covered in a stream I didn’t attend). By combining AI with Blockchain for example we might see some innovative solutions to the patient data access issue. Having more accessible data will benefit everyone – not just the AI technology but also the patients and HCPs themselves. I have heard so many people complain about going to a new doctor and having to essentially start from scratch as they do not have access to their full digital record. Of course at the same time we need security and privacy for these said records.
Leading on from this point (again with same disclaimer!) I am also struck – but not surprised – that with all this talk of patient data there appears to be no actual patients on stage talking about what AI really means to them. Just as I have spoken at conferences about how social media has had a huge impact on my health it would also be great to actually hear from patients who have seen a positive impact from AI.
“Why aren’t we doing this?”
Today I gave a presentation on Key Online Influencers (KOI) to my reverse mentoring group and one comment I got was “why on earth aren’t we doing this?!”. Great question. While many other industries have embraced the age of the online influencer pharma has not. Now we all know that pharma has been very late to game in terms of social, driven my multiple misconceptions, most of which revolve around a “we can’t do that” attitude or perspective, but we are also an industry used to working with “influencers” so why is the concept of online influencers so difficult?
I am old enough to remember to industry pre-digital, and unlike some other industries, pharma actually embraced the concept of influencers, in the guise of KOLs (Key Opinion Leaders). There are process and job functions dedicated to working with KOLs and yet when it comes to digital many run out of the room screaming (not literally I hasten to add). It seems to be linked to this lingering fear of social media, and the lack of perceived control that this channel has brought. Yet we have the process already in place that just need minor tweaks to cope with the online realm so why are we not doing more with Online Influencers?
I firmly believe the answer to this lies in a lack of understanding and the fears that many senior people still associate with social media. Counter this with the digital natives we now have working in pharma who may not fully understand the reticence to use the channel but are not yet in a position to champion it or to challenge the status quo (unless they are reverse mentors!).
What we need is for our senior leaders to embrace what has become one of the main communication channels of our age. We need those leaders to step up and help us bridge our old KOL process to a modern online friendly process. We need those leaders to question their teams as to “why on earth aren’t we doing this”. The only way they will be able to do that however is through education and actually starting to understand this channel, and understand that it brings us value and is not to be feared but rather embraced.
I am very fortunate that I have been able to build up a reverse mentoring programme for my client and am starting to see some of this change happening. It is immensely rewarding to start seeing senior leaders say things like “why on earth aren’t we doing this” when I talk about online influencers. It is also so rewarding to see the change that this programme is driving. After years of helping drive change in pharma companies this has to be one of the most personally rewarding initiatives I have been involved with. When I set up the programme I would have been happy to see one or two senior leaders using social – but now I a seeing many more signing up, and also embracing other new technologies such as AI and Blockchain. Maybe soon the question will be “why on earth didn’t we do this sooner”…
The role of influencers
Back in June I read an article on the BBC about influencers and the potential backlash against them. It is fascinating to see the rise of the influencers on social media and the impact they are now having on people’s lives. It is a sign of our times that some of today’s biggest celebrities online are not movie or pop stars but ordinary people who through a combination of hard work, luck / timing and personal investment have managed to build themselves up as online influencers. Some of these online “stars” can get as much as $20,000 per post and they can have incredible power on people’s behaviours and attitudes.
Sadly not all of this power is well used and we have seen plenty of health scandals and issues that have arisen as a result of influencers sharing false information, such as the vaccine issue or an increase in body dysmorphia as teenagers try to mimic the perfection they see on Instagram.
This issue is then further compounded by an increasing use of cheats and fake accounts to build up the accounts – often to appear to be more influential and therefore generate higher revenue from posts. As the article mentions this is very vexing for the influencers who have actually got to where they are by a great deal of hard work, rather than paying someone or a company to boost their followers for them. I fully understand them – I personally have been working hard to build my own Instagram account, only to then see a friend’s account jump by over 6,000 followers in a matter of days. On closer inspection most of his new followers appear to be fake accounts but this still seems to be working in giving him a leg up in terms of impact and visibility. I myself now am wondering whether I too should consider this route – because frankly I do not have the time to spend in order to get thousands more followers.
Whilst for me this situation is vexing it highlights an important issue – namely that there seems to be little remedy for the rise in fake accounts … and the subsequent influence they help generate. Whilst those teens see perfection what they may not realise is that a great deal of that perfection is in fact fake and bought.
One could argue that one potential remedy is for companies to invest more and put more effort into countering negative influence, e.g. in the domain of vaccines, however this is unlikely to happen in the near future. Particularly in pharma I would question whether many pharma companies have the talent and resources to do this anyway. As an industry we are still woefully behind, and this is not helped by a lack of internal training and understanding on this critical channel, or senior management support, e.g. through extra headcount and resources. I see this lack of resources and expertise through the teams that I support but also by the low number of jobs coming up in pharma social media (heads up I’m looking – email me if you have an opportunity!).
My fear is that by the time we as an industry have caught up to where influencers are today it will be too late for many of our patients. Unless we start to really invest in this mainstream channel, and build up the teams and expertise to do so, we will continue to lose ground to the fake news and false information that is being pushed by online influencers with a very different agenda. And do we not as an industry have a duty of care to our patients to try to ensure they have access to accurate information? I would say we do but I do not see us meeting this duty of care through our continued ignorance when it comes to social media.
My most popular image in Instagram … except I paid to promote it so does that really count?
