#ChronicillnessVOICE SPECIAL EDITION ‘PHARMA’ APRIL 2019 | eyeforpharma Barcelona review | Plus Newsletters & Resources

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Personal review of the eyeforpharma 17th Annual Barcelona conference March 12th – 14th 2019 | #efpBarca
Including a brief review of the #efpawards pitching day
11th March 2019

By Carole Scrafton


Wow! It’s been one year already since I first embarked on the World of Pharma conferencing, in 2018, and here I am writing my review for the eyeforpharma 17th Annual Barcelona conference March 12th – 14th, 2019 | #efpBarca. When I attended the conference back in 2018 I had no idea how my world as a patient and patient group leader would change, find focus and a niche that was different to that of my peers.

Sharing information has always been a huge part of our ‘Mission Statement / AIMS’ but since the conference last year and the epiphany which showed me how the work that I had been doing was indeed making an impact without me knowing it, we now have a proper sense of purpose. Now, I share a varied selection of news from across the whole medical healthcare industries and out to all stakeholders #notjustpatients.

Health and research advocacy were always huge parts of our Mission Statement and now it has grown to include patient, and also pharma, advocacy.

Not seeing myself as a ‘patient’ meant I’d been missing a whole sector of the healthcare industry ‘Health Comms‘ as a result of everyone using different jargon’s, and languages, and not noticing that they were all talking about the same things. Seeing myself as a patient is horrid, something that I wish I didn’t have to wear the label for, however it is how the medical healthcare industry refers to us, rather than people. Thankfully this message has also filtered through and we are now being viewed as #notjustpatients and in the view of Ruth Wilson and her ‘Person before Patient‘ campaign and taking people on journey’s to better health through story telling. Seeing patients as people first is in fact a huge necessary change in order to gain the trust of people with multiple chronic illnesses because we spend our whole lives as patients and don’t often get the opportunity to be just ‘ourselves’ as people.

Training and education has also been a huge part of our Mission Statement, so I am pleased that during this last year the message has been filtering through to ‘Pharma’, but they aren’t the only sector of the medical healthcare industries that requires to address it, something I have been advocating strongly for and a message that I firmly took with me to Barcelona in March.

It is my honour to announce that I’ve just been made a partner by PFMD (Patient Focussed Medicine Development) with their Working Group 6 on a project that involves Training and education, patient engagement and with patient involvement throughout their ‘Made with Patients‘ project that is working on #patientinvolvement & #patientengagement.

PFMD aims to establish, at global level, a systematic and consistent approach to patient involvement – a worldwide accepted standard for how and when the patient engagement should take place.

An exciting new role and challenge for me that will see me working with some very fine individuals, patients and professionals, and other organisations from across varying stakeholders within the world of medical healthcare, clinical research, pharma and patient organisations. Helping to ensure that literature and medical explanations are patient friendly is of course something which I will treasure for all time, an opportunity to make a difference at something I campaign for. Getting rid of all the medical ‘jargons’ and different languages and putting them into one that can be easily understood by all for this project is fabulous and I feel really honoured to be a part of it. I’ll be getting my hands dirty assisting others to create a ‘world’ that patients crave all over the globe, one that they and professionals alike can understand, whilst helping to create standards for ‘patient engagement’ that can be universally followed by all stakeholders…. well contributing to! What a fantastic opportunity!!

Being invited back to #efpbarca this year was indeed exciting and also an honour. This review that follows will give you a few insights into my week at Barcelona with eyeforpharma as a ‘Volunteer’ Patient Advocate, and as ‘Impatient Conference Steering Committee member, attending through their ‘Patient Policy’.


Opening words from eyeforpharma Chairman Paul Simms

On the morning of 12th March I was really looking forward to the conference and the opening presentation by eyeforpharma Chairman ‘Paul Simms‘ who has helped me a lot during the last 12 months to understand the changing World of pharma. The opening speech, presentation, gave 5 bold messages from Paul about what he considers are possible for the future of pharma and trust me it was well accepted and caused much conversation, and debate, throughout the course of the week.


Maybe it’s time for us all to revisit a movie from the past…
… ‘Minority Report’!

“Scary – It doesn’t seem too far from it being possible now” is the conclusion of the discussion I had with friends the other night about the state of digital healthcare, wearables, Amazon Prime and not to mention how that whole ability to be able to predict crime in the movie is what is happening to healthcare in the ‘real-world’.
Really, honestly, give the movie a watch and then compare it!
~ Carole


5 bold predictions for pharma – opening presentation by Paul Simms, eyeforpharma Chairman.

These are my interpretations and thought processes related to Paul’s prediction’s…
… Well he does ask!

1 …Pharma will become irrelevant.

The changing pharma landscape is providing many different forms of access to innovative technologies. Patient platforms are becoming more accessible to marketing and other means of healthcare service providers, and clinical research is moving towards precision medicine and closer relationships with patients. Digital and artificial intelligence are driving med-tech, digital therapeutics, gene therapy and robotics, 3D printing is also enabling healthcare to look elsewhere other than pharma.

Even drug making isn’t something that ‘just’ pharma does anymore with the abilities and technologies providing anyone, that can afford it, the opportunity to make their own medicines based on their own health data. How, well technology and deep learning enable them to interpret their health data through new data collection techniques using deep learning, and also new analysis tools and digital app technologies for patients and pharma to harness that data to begin with. (my interpretation)

The other predictions that Paul discusses and shares with us can all be attributed to the demise of the term ‘pharma’ if you think about it!

My own opinion is that the pharma landscape is already segregating outwards and becoming more of an ‘umbrella’ term anyways with stakeholders now fast becoming competitors, or in some cases – collaborators making them more like ‘partners’, meaning that they firmly hold their positions within pharma.

Why do I say that?
Well, when you consider who the ‘stakeholders’ are, each sector of pharma is slowly becoming stronger and more competitive and the conference in Barcelona proved that.  You only needed to walk around the EXPO hall to witness it with your own eyes. 

In my opinion, pharma is already fragmenting with even ‘Healthcare IT’ looking like a stakeholder, and ‘biotech’, ‘med-tech’, ‘AI’ and ‘digital’ too and they are growing into larger components that contribute to the industry, which technically require other sectors of pharma in order to survive including ‘patients’ who are being ‘highly regarded’ and placed ‘central’ to their models. This of course is only a fraction of the stakeholders involved!
However, because these stakeholders are not viewed as being ‘pharma’, as such, this will help to eradicate the term ‘pharma’ and deem it irrelevant. Some people may say that it is almost irrelevant already!

However, in my opinion, the statement comes back on itself because the ‘partnerships’ that are developing and forming between pharma – pharma – other stakeholders; pharma – patients – other stakeholders; clinical- pharma – patients etc, which are designed to create long term / long-lasting relationships, are what will help keep the term ‘pharma’ alive, especially as platform building is fast becoming one of the ‘all-round’ solutions within pharma!…

as Paul says…
“The only way to reverse pharma’s irrelevance is to immediately change our priorities: instead of a focus on the romantic premise of internal R&D, we must prioritise partnership as the greatest USP of a company. Prioritising partnership might sound like a strange thing to do, but it’s what the most valuable companies of today do – as platform companies.”

As Paul also pointed out, ‘anyone’ has access to new technology and the ability to be innovative with it, so it is possible to see how the term ‘Pharma’ will become irrelevant.

(Naturally I look at this from a differing perspective, plus I don’t speak ‘pharma’, so my view is not likely to marry with that of pharma!)

2 …The fastest growing healthcare company isn’t a healthcare company.

Okay, this is where ‘Google’ and ‘Amazon’, Apple apps and technologies for ‘self-health’ monitoring, come onto the landscape for healthcare needs, healthcare information and even the market place for healthcare products including medicines. Amazon’s health services are set to be popular with Amazon Prime subscriber’s according to Paul, and it is easy to see why? when patient’s don’t trust pharma but they do trust Amazon!
It’s no surprise really as ‘patients’ have been reaching out towards such platforms for many years so why shouldn’t they try to take a piece of the ‘pharma-pie’!? especially when statistics prove how much the common people use, and rely on, them as forms of healthcare resources. I don’t personally use Google or Amazon for my healthcare needs, but I can understand why people do.

I don’t have much to say about this!

3 …Pharma companies will realise they “can’t just have sex with their cousins”.

Mmmmm! This one raised a few chuckles, but it is a serious observation by Paul as it is more than obvious that new approaches, and pharma business models, are required in order to make your way in the world of ‘Pharma’.
It is no secret that I hold a firm belief in an ‘all-stake-holder’ ideology , and multi-disciplinary approaches, when it comes to the medical healthcare industry, and new pharma models, so I was nodding my head a lot during this bit.
It is interesting that Paul refers to ‘pharma’ platforms because yes, they are growing in number but not many of them are geared towards to patients and engagement, they are still quite ‘in-house’ platforms geared towards professionals within the field of pharma that they are predominently based. Considering ‘patient-centricity’, or ‘person-centricity’ (which is what it should be referred to), is supposed to be at the heart of pharma focus it would be great to see more of that within these platforms rather than them being geared towards professionals only!
I am a supporter of pharma community platforms, but as a patient wish there was one platform for all of them rather than insular separate ones. I believe that compiling resources and knowledge could lead to better results. Plus, it would make them easier to find.
If it is possible for me to build a community platform map for all the support and care services for the North East UK, which is a project I shall be embarking on later this year then it is possible to produce a pharma community map too. FindMeCure is embarking on such a community map for clinical research purposes for pharma so it would technically have a place on both maps.
If I were to intertwine my ‘patient community map’ with theirs it would create a parallel of patients and pharma exchanging information and building relationships for engagement purposes as well as clinical trial recruitment and improved market access, not to mention that introducing issues regarding RWE and technological advancements / innovations will also be a possibility.  Patient opinions are just as valuable for these topics as patient engagements and discovering new medicines.  Surely this would be a great step towards having everything under one roof, which is my chief and primary dream as a patient and that of many others.

I can visualise this, can’t you? Many people that I spoke to in Barcelona agreed that this would be indeed useful, and is in fact a great ‘essential’ requirement in this changing pharma landscape! Although it must be stated that education and training is imperative before that happens.

There’s no room for insular business behaviours anymore!
(Later on during my panel discussion review I will discuss ‘why have a dog and bark yourself’)

Paying attention to Corporate responsibilities is also something that I firmly believe in as a ‘patient’ who can see how ‘pharma’ can improve its patient relations, and with that the scope for market access within patient communities, and platforms whether they are pharma, or, patient based.
With respect to attaining true patient / person-centricity showing that they are responsible and rebuilding their reputations will become a ‘benchmark’ for all companies, not just within pharma. It is no secret that pharma needs to improve its status regarding CR, and hopefully they will understand why patients are more likely to begin trusting them if they can see pharma respecting it, and all stakeholders not just patients. Is it time now for pharma to get validated? (Impatient Round-table discussion regarding this topic is later in the issue)

4 …Prevention becomes unpreventable.

This one is common sense to any patient, easy for me to say isn’t it?! However, as patients we spend most of our chronic lives preventing the triggers that set off illness symptoms and flares. Check out this post of mine to read my health journey with chronic pain, inflammation and hypersensitivity to anti-inflammatories to read about my daily struggles that involve prevention methods for varying illnesses >

https://fibroflutters.com/2019/03/30/the-burdens-of-pain-management-inflammation-and-sensitivity-to-anti-inflammatories-carole-scrafton-27-march-2019/

Paul is correct to bring this type of patient’s health to the forefront but I feel it goes a lot deeper than what is perceived. Preventative medicine, precision medicine, or therapies, are hardly a new concept to patients, but clearly to the world of pharma and healthcare in general they have some catching up do. If they took the time time out to talk to us they would know how preventative measures & medicine work wonders for us, we just haven’t had the proper support from the right places all this time and that is in the hands of HCP’s.
Time has moved on, and methods of treating patients with it, we now have the technologies to help predict diseases which didn’t exist during the 25 years it took for me to get diagnosed.

However, this concept by Paul also refers to the prediction of diseases through ‘phenotyping’ / ‘Digital Phenotyping’ which takes into consideration such factors as lifestyle, environment and behavioural choices and their affects on the genetics, rather than just ‘genotyping’. (Something that I do not know the science of, so apologies if I get the wrong end of the stick!)

Therefore gaining earlier diagnosis, which in theory should give HCP’s the opportunity to help prevent a disease from getting to such a ‘bad-state’ from a patient waiting years to get a diagnosis by which time are needing tons of, ‘costly’, medications and treatments when they could have been prevented.

Technology and machines are helping to create a world where our health can be predicted so that we can then be programmed into prevention treatments to allay any impending diseases that we are genetically susceptible to. A fantastic innovation for healthcare and people with chronic illnesses. Precision medicine is also part of it, some might say they mean the same thing!

Of course environmental, and behavioural factors, should be considered, and not just genetics and genotyping, surely, it is noted that our symptoms etc change over time and if we look back to Darwin’s theory of natural selection and how we change to suit our changing environments then this is quite a sensible ideology. We are continuously adapting to new environments and everything within, or connected to it. Add this notion to the progression of technology, innovation in the realms of data analysis and processing with respect to a future of precision medicine within pharma then it makes it only right for people to assume that prevention will become unpreventable.
A very valuable notion regarding Global Health especially in parts of the world where certain illnesses are rife and controlling them is difficult, diagnosing them is difficult not to mention treating them. Prevention is necessary in some places.

Naturally, my own opinions!

So phenotype, ie the interaction of genes with environment which change throughout a lifetime, may be more actionable than simple genotype.quoted from Paul’s article
“today’s leading proponent probably being Janssen’s Prevention Centre and World Without Disease Accelerator.
quoted from Paul’s article


5 bold predictions for pharma – opening presentation and article post conference by Paul Simms, eyeforpharma Chairman.

This makes perfect sense to me and something that I naturally support being a patient with a ‘genetic rare disease’, and I waited until I was 39 years old to discover it after years of agonising healthcare consultations most of which deeming me a hyperchondriac with a borderline personality disorder!

‘Prevention, is better than a cure’ is a phrase that I’ve used for over two decades.

5 …The first patient-created medicine will arrive.

Admittedly, an area that I don’t know much about!
Paul explains this really well though!

As mentioned previously the idea that people will soon be able to create their own medicines isn’t too far off as technological advances and AI make it easier for people to track, and monitor, their own health data.
Mieke Kerremans (speaker on Im-patient Gender Gap youth panel discussion) has already done this because her two children have a very rare disease that even doctors knew very little about. After being left without anywhere to get the enzymes required for her children she had to go through the process of charting and using food diaries to find out what it would take to get the medicine they needed. It took a lot for her but eventually found somewhere that would create what her children needed. So in essence this is kinda already happening.
Also it is possible to 3D print medications these days which is how it can be said that it will impact on the relevance of pharma, especially if people can easily make them without even having a science degree! I think this would need to happen at an epic scale for it to ever disrupt the pharma business.

Take a read of this article from last year!


“The only way to reverse pharma’s irrelevance is to immediately change our priorities: instead of a focus on the romantic premise of internal R&D, we must prioritise partnership as the greatest USP of a company. Prioritising partnership might sound like a strange thing to do, but it’s what the most valuable companies of today do – as platform companies.”


5 bold predictions for pharma – opening presentation by Paul Simms, eyeforpharma Chairman.

Well, I have responded to Paul’s 5 Bold statements and can only hope that I have understood them correctly, though I’m sure people will sharp put me right if I haven’t!

You can read these ‘5 bold predictions’ of Paul’s via this link to his Linked In Article.


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