Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton


Me addressing the floor with my messages to pharma

“Many companies still haven’t added Social media channelling to their infrastructures, which is a huge concern for me as it is getting to a point now where actions speak louder than words.”

Structure your Infrastructure, Carole Scrafton, CEO & Co-Founder, MBS

My messages to Pharma in detail.

These messages are really quite self-explanatory, and also send a very strong message to those of us within the realms of the changing medical healthcare industry, be it for pharma, as a healthcare professional, scientific researcher, or a patient advocating for those changes to take place.

Me adressing the floor with my messages for pharma

1 – Structure your Infrastructure

Infrastructure is key to overall balance and if a company does not keep its infrastructure bold, and tidy, then the additions will just make it buckle and crumble. It is common business sense to know where to place your bolstering points within an infrastructure and to keep it up to date so that when making big changes it won’t cost as much each time. The cost to completely restart an infrastructure will far outweigh the costs of regularly reviewing it and making changes as you go along.

Many companies still haven’t added Social media channelling to their infrastructures, which is a huge concern for me as it is getting to a point now where actions speak louder than words. If you’re a pharma company, or an organisation moving within this system of change then I think you could get left behind if you don’t act soon. Slapping social media onto an unstable infrastructure is a huge risk to take and not one that I advise any company to do.

It’s time you embraced social media and start using it for what you want in order to gain the results that you need!

Structure your infrastructure’s to incorporate it, channel the platforms into your infrastructure’s, learn how to use it and begin to engage.

You have asked us as patient communities what we want and where to find us, and we keep telling you the same answers so, I suppose it is really up to you to decide one way, or the other, isn’t it?!

“It’s time you embraced social media and start using it for what you want in order to gain the results that you need!
Structure your infrastructure’s to incorporate it, channel the platforms into your infrastructure’s, learn how to use it and begin to engage.”

~ Structure your Infrastructure, Carole Scrafton, CEO FibroFlutters, MBS.

2 – Educate to medicate

This is actually a serious statement, which I had a lot to say about, but unfortunately, I was having dreadful difficulty with brain fog all day, typical, this day of all days!

However, at least I get to speak about it here in my synopsis and just hope that the message still gets out there. I know that my fellow peers on the panel all agree that medical education for HCP’s is important regarding clinical trial information, drug prescribing and passing information onto patients regardless of there being info leaflets in with medications. Patients struggle with the scientific language and jargons even when they begin to use ‘Google’ for finding answers, and I know that Trishna, Teresa and Paola also campaign for this to change. Something all four of us spoke about during our time at some point on the panel.

It is way past time for a new ‘universal-language’ and this was a very clear message this week during the Patient Summit, with ‘Emma Darcy Sutcliffe’ strongly stressing this message as well as other Advocate Speakers during the Im-Patient Conference where it also came out again, during the roundtables, like it did at the eyeforpharma Barcelona conference which myself, and my colleague Sonia, participated as facilitators. 

It is also fairly clear that things are always taken out of context as well, which can really change the meaning of something.  This is because of the language barriers and lack of education given across channels.  Cross-channeling was discussed at the Summit and is something I like the idea of because it’s what I do, but call cross-networking instead.  I have a different language so I often find that these processes are the same as mine just called something different.  My opinion is that cross-channelling is a great idea but understanding each other and everyone being on the same page will be essential for it to work effectively and efficiently.

What is also important, though, is how ‘you’ as companies ‘change’, and develop into using Social Media. Incorporating / channelling it into your infrastructure’s, your ‘staff’ may need to be re-educated, or go for refresher courses, or post MBA courses that are specifically designed for modern day pharma marketing. St Joseph’s University is a fine example of an institution that supplies courses designed as such.

The Post MBA course was so enticing at St Joseph’s, even for myself as I did actually qualify as an applicant, got invited to apply by the Dean, and even almost applied… and I’m not a pharma employee. However, that doesn’t matter because I have an MBS, Master of Business studies, and have already completed many of the proposed modules. This will apply to any employee that you have with an MBA level education.  A refresher would be great!

Due to the fact I am now immersed in this new World of Pharma the course would have been ideal for me to make my already, ‘unique’, skillsets even more unique! However, I don’t have the means to pay for it, but ‘you’ as companies do. No Excuses, and this is just one example take a look and you’ll find others out there.

The course can be done on site, or online, and you pay for each module as you do it meaning it is almost pay-as-you-go studying! The courses are rolling so you can choose when to do each module and you have 5 years to complete the whole course.

Find out more about St Joseph’s University in Philadelphia (US), and their post MBA courses via this link >>>

back bus education school
Photo by Pixabay on Pexels.com

3 – You know what to do

This is self-explanatory, and I think I said that when speaking on the panel.

‘We have given you the answers that you asked for’ is the key message here from Patients to Pharma.

It is true! and honest!!

It doesn’t matter how often you ask, the answer will remain the same, so, why can’t you get past this stage of the development…?

Well that has an easy explanation from my perspective, one that may not be too obvious to the person sitting making the decision. Channelling Social media needs to be done carefully, and not to throw yourself at it, so I can understand why companies are being shy about dipping their toes into it. But it’s necessity, in my opinion, for reaching more patients for pharma.

  • Are you scared of making a mistake?
  • Will that mistake be too costly financially??
  • What if you don’t get it right???

Well the above questions are normal, aren’t they?! Any company that is going through changes will be asking these questions, it is normal business practice isn’t it?!

My advice is to begin with Facebook and / or Twitter and create a company blog, which is regularly updated and that you can schedule posts to go out to those accounts. Once you have those key platforms set up and running then you can create other links to Instagram, Pinterest, etc as well.

Or, alternatively look for software that will help you to multichannel, there are plenty of new alternative ”toolkits’ for doing this type of thing. I don’t suggest that you omnichannel until you have the basic infrastructure built and knitted into your business model.

Naturally, you have to upgrade each social media account so avoiding having them all to do at once so staggering them into your infrastructure is the best business common sense thing to do. Unlike me where FibroFlutters needs to upgrade everywhere and don’t have any funds to do it… yet!

However, technology is advancing so it is becoming easier and easier to acheive without going to the trouble I did when connecting my network!

I recently attending a webinar through eyeforpharma and Agnitio who helped produce the webinar. I want to share it with you because I feel that it is something worth watching and listening to.  There are solutions out there and I give you this as a great example 

Expert insights: Market access’ hidden digital opportunity

Panellists:  Sachin Kamal, pfizer / Dr Grace Jennings, NICE / Matt Portch, Sunovion Pharmaceuticals / Mads Bjarni Korbech, Agnitio

Moderator:  eyeforpharma Chairman Paul Simms

Watch the recording below.

‘Thanks to Agnitio, providers of multichannel customer engagement solutions’


CASE STUDY: Market access: Seven ways to apply digital technology | Agnitio

To see what digital communications can do for you, here are seven ideas to get you thinking.

Mads Bjarni Korbech  from Agnitio relays back some feedback from the post webinar survey  >>>

60% of webinar survey respondents were unaware of the digital opportunities in market access or were unclear on how to act. Clearly, there’s lot of scope for companies to start working in this area – and catch up to the early movers who are already gaining commercial advantage.

FibroFlutters are officially accepted supporters of Agnitio and their work towards helping pharma with digital opportunities.

selective focus photography of person holding turned on smartphone
Photo by Lisa Fotios on Pexels.com

4 – It’s time to start doing and stop saying.

It’s all talk, talk and more talk!

It’s the same questions, the same topics for discussion and in my own opinion this is a sign of ‘stagnancy’, which is not good for any industry, not just pharma.

What is the problem with taking responsibility for your company and all its assets? That’s right, Corporate Social Responsibility is making a comeback meaning pharma needs to work hard in order to re-instil it into their infrastructures and this is where the predominant problem lies within the industry, in my opinion, and why patients don’t trust pharma! it’s not just about the money!!

Patient’s don’t trust pharma! How do you solve that issue?

Corporate Responsibility is the most sensible answer here and has changed so that it includes all areas and aspects of a company’s business. An all stakeholder approach to responsibility!

Thus, meaning it isn’t just about ‘patients’, ‘buyers’ and ‘payers’ anymore, but also your staff and trades people you trade with.

Trust is what you are trying to gain with patients so really this section of your CR should already be in place if you’re seriously going to add Social media platforming to your business models, and infrastructure’s, in order to try and engage.

In 2018, only one company—Googlemanages to attain a strong CSR score. The rest of the companies sit in the average range. Among the top 10, there are 5 new companies: Natura, Novo Nordisk, Canon, Michelin and IKEA join the top ranks. BMW, Intel, Cisco, Rolls-Royce Aerospace and Colgate-Palmolive slip from the top 10 since last year.

Based upon: Reputation Institute’s release of Global CSR RepTrak 2018.

According to RepTrak ‘Novo Nordisk’ were the only pharma company in top 30, which they pointed out several times during the webinar that I attended. There weren’t many pharma companies in the list tbh but I did see Sanofi, Lilly, P&G to name some within the top 100.

Based upon: Reputation Institute’s release of Global CSR RepTrak 2018.

Click the button below to read the report

An ‘all stakeholder approach’ is something I believe in and advocate strongly for because of my desire to see ‘multiple disciplinary centres for people with multiple chronic conditions’.  All stakeholders have a ‘corporate responsibility’ to each other for anything ‘centric’ to work, my opinion but it is really just ‘common sense’!  As patients with multiple conditions we rely on all stakeholders to keep our worlds ticking over so why shoudn’t all stakeholders be involved at a more direct level where impact would be of better importance and effectiveness.

Pharma have been striving for ‘patient-centricity’ for two decades and still haven’t found that ultimate answer as to how to acheive it.  A great start would be to re-instil CR into their business frameworks and to begin working towards the goals that the likes of ‘REPTRAK’ have in order to gain that ‘stamp of credibility’.  Patients should see that ‘stamp of approval’ as a good sign of change and  and will then think harder about whether they can ‘‘trust’ you because of it.  You are more likely to be respected if you do.  After-all you are requesting ‘patient champions’ with stamps of credibility so why shouldn’t we ask the same of you?

Why, should patient-experts come under so much scrutiny when pharma companies that don’t follow the basic responsibilities sit there and get away with treating patients like nothing more than cheap commodities?

See our About Us pages  >>>

Think about it!

What you ‘do’ isn’t really changing,

It is ‘how you are doing it’ that is changing, but you do have a huge responsibility to all of your stakeholders to get it right!

  • Speaking of financial costings and what platforms you decide to use?
  • Where is the best platform for patient engagement and pharma marketing?
  • Compliancy and regulatory frameworks?  well that is understandable!

Well in my opinion, all of them!

Different genres of people use differing #SoMe platforms and if you wish to get ‘optimum reach’ then you need to consider developing an ‘omnipresence’ so that you reach all platforms.  

However I must remind you to make sure that you have strengthened your infrastructure first!

Show you are responsible, prove you are worth trusting by doing so, and regain patient’s trust.

Stop talking about it and get on with it.


“For Lode De Wulf to congratulate and praise me is something that I will always have to remind me that I must have said the right things!”

Accreditations, Carole.

Please use the page navigator below to move onto the next page

Page 5