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!

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.

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.

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”…

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?

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.