To begin with a few words from me …

… Carole Scrafton CEO fibroflutters.com

Introduction

Since 2017 I have had a keen interest in this event for the way that it approaches the need for patients within the pharma landscape. Okay, I hear a few ‘cynics’ sighing and saying under their breath “it is easy to plonk a few patients on an agenda and say that you’re patient friendly isn’t it?” Well you’re right, it is easy to do that, but that is not how eyeforpharma operate and it is something that I can validate through personal experience.

With a ‘patient-centric landscape‘ finally beginning to look like it is developing not only in Europe, but across the Globe in many other areas, as well as pharma, it is fair to suggest that patients had something to do with that. I know that I can hold my hands up and say that I helped, well at least so people keep telling me anyways.

My views should be quite well-known by now about how patient healthcare as a whole should be operating due to the nature of the ‘patient landscape’ relying heavily on each, and every, stakeholder for their survival. Okay, I will say it again just in case there are new readers out there. In other words for our lives to go on we need ‘all-stakeholders’ so that we can live through the illnesses that we do every day. Whether it’s pharma, clinical, medical, digital, HCPs, diagnostics, research, and so on… Pharma, in our world is only part of the solution, but the changes and developments that I have witnessed since 2017 have been huge by pharma, even though they’re only little in reality with a lot of work still left to do.

Don’t be misconceived because taking the ‘all-stakeholder’ approach into consideration appears to have been accepted across many sectors of the medical healthcare industries and #notjustpharma!

It is partially because of this that it is ‘my opinion’ that patient centricity has been easier to navigate. Of course, we are obliged, if not ushered, in current day to call it ‘person-centricity’ just as much due to everyone being patients, patients being people first, and generally because patients are #notjustpatients, in fact often caregivers, workers, or volunteers like I am who spend time advocating, raising awareness, running support groups and supporting / advising the needs of those who are chronically ill.

Before I entered the world of pharma as an advocate I didn’t see myself as a patient, in fact I saw myself as a ‘person with multiple chronic illnesses, including rare diseases‘. I’ve spent a short while adjusting to being referred to as a patient, trying to get our members, etc, to also view themselves as patients only to now have to readjust back to how it was before. Patient centric ideals are all working towards placing patients at the centre regardless of what you call us, and it must also be remembered that everyone is a patient, you don’t have to be chronically ill!

When I began using the hashtag #notjustpatients it was because we’re not, but it was also a ‘double entendre‘ and this is something that I’ve explained before. FibroFlutters have always had an ‘all is welcome‘ policy and we turn 6 on May 12th. We were not influenced by pharma, or medical per se, in fact our decision as Founding members was based purely on our personal experiences as people and our needs in life living with chronic illness.

The irony of discovering the pharma ideal of patient centricity could be called ‘an omen‘, ‘coincidence‘, or just a plain simple ‘flow‘ of circumstance. It is a discovery that has changed my whole life, with the help from eyeforpharma, as it opened my eyes beyond the ‘patient‘ window to see that our ideals existed in other areas of the medical and healthcare industries. We were not fighting our fight alone!

However, on the other hand it would be unfair to ‘not’ discuss the fact that the whole ‘dance’ about patient centricity appears to have become subdued as the industry takes on board the whole change towards implementing digital and AI technologies.

I’m not suggesting that this change to the industry landscape isn’t required because in order for medicines development to become more economical, and personalised, ‘digitalisation’ is proving to be an essential component. The talk of virtual trials for instance to help with trial retention by connecting patients who live in far away locations, or are too sick to leave the house. The introduction of telehealth services would be extremely beneficial. Digital healthcare services are not currently viewed as marvelous by patients, but it is something we will have to learn to like. Our data isn’t safe, well at least that is the general consensus. However, everyone is happy that they don’t have to repeat their medical biography every time they see a healthcare professional.

It is time to move onwards and focus on sorting out those data silos, training everyone how to engage with digital health as I’m fairly certain that we are all on the way to sorting out how to build relationships and engage with one another. Yes, there’s still work to do, but my point is that we know how to do it now so let’s just get on with it so we can figure out solutions for another bottleneck that is blocking progress ie: data silos for example.

None of it, in my opinion is attainable without remembering to implement patient / person centric approaches, though, so they should still be portrayed at the forefront of company strategies. At this point I remind my readers that although I am not a ‘pharma’ executive or experienced in pharma, I do know about business strategy, supply chain strategy and corporate ‘social‘ responsibility, taking these business aspects to help design a more aesthetically pleasing company by means of building reputation. (It’s called corporate responsibility now, social was dropped and the term means responsibility to all)

Read this article

Breaking out of data silos in commercial | eyeforpharma | By Ulrich Neumann on Oct 21, 2019

Pharma’s commercial teams have much to gain if they can overcome technical and cultural blockages that prevent data sharing

Breaking out of data silos in commercial

On page 3 of this #efpbarca special there is a bonus Q & A with Paul Simms, Chairman of eyeforpharma when I asked him what he thinks ‘Patient Centricity‘ means today in 2020 compared to back in 2014

Okay, previously I mentioned CSR, Corporate Social Responsibility, which appears to be viewed as an ancient toolkit from 20+ years ago, but in my opinion it is useful in the modern day of 2020.

Something that businesses seem to be slow at understanding is that Corporate Responsibility is at the heart of reputation building, which has been proven to increase trust within stakeholder relationships. No business can survive without those relationships no matter who the stakeholder is. This to me is why all stakeholders should be included in company manifestos and supply chain strategies. Pharma supply chains, to me, are complicated so require an intense structure that can carry the weight of what they hold.

It is common sense to me that reducing all potential bottlenecks before implementing new supply chain strategies is a necessity so adhering to social responsibilities from the beginning is also common sense.

What effect will purpose have on your reputation this year?

Higher Purpose and Data Privacy Rise in Importance in 2020 Global Trends Report Download the Infographic…

https://insights.reputationinstitute.com/blog-ri/higher-purpose-and-data-privacy-rise-in-importance-in-2020-global-trends-report-infographic?

Read the report – 2020 Global Trends in Reputation

https://insights.reputationinstitute.com/ri-reports/2020-global-trends-in-reputation

I’m pleased to see that the agenda is addressing many areas, including elements of CSR, and I will have the opportunity to experience for myself how it works out. It appears that dealing with patients is the core responsibility that will be addressed. However, there are many other aspects that can help a company to boost its reputation. Building stakeholder relationships ‘per se’ of course, and not just with patients, is also being tackled, but it is time to consider other things, and new ideas would freshen up the changing landscape. With it being a new decade it is rather an appropriate time to make those changes.

What I want to hear is how companies are approaching the other social responsibilities and will be listening closely to find out. Just because I’m a patient doesn’t mean that I am only interested in the ‘Patient Track!

Yes, I have a complimentary patient pass, my flights and accommodation are booked and I can’t keep my eyes of the ever developing agenda.

So, why do I write all this in accordance to the 18th eyeforpharma Barcelona Conference 2020?

That is an easy question to answer considering what is on their agenda and the fact that I believe you all need reminding about what is the strong centerfold behind it. What is the key driver that helped to produce the progressional changes to begin with… which was that urge and desire for patient centricity!