What is Patient centricity in 2020?

It’s 2020 and a new decade, time to dust off the old and bring out the new.

With this is mind this section is aiming to bring ‘Patient Centricity’ back to the forefront of conversation.

Also, a peek at patient engagement not being patient centricity

Backtracking to my introduction and thoughts about patient centricity, I decided to look into what patient centricity is today to remind people of what it means and the purpose of it.

Included amongst it all I also, briefly, touch upon how that patient engagement and patient centricity are different despite many companies from across the industries claiming to be ‘patient centric‘ because they are ‘engaging with patients’. It’s not an analysis, just a reminder of what they both are!

Also, to point out that patient engagement is in fact only part of the overall toolkit a company needs in order to attain a true patient centric identity. I have done the aforementioned by providing a series of article links for both topics.

Regarding ‘what is patient centricity?‘ I ended up contacting Paul Simms, Chairman from eyeforpharma for what his thoughts were and he has helped to author edit part of this special section.

Why question it? I hear you ask, well that’s obvious really because looking at it as a patient somehow the reasoning’s and translations have become skewed in a way that mirrors a game of ‘chinese whispers’. Naturally, I don’t expect people to believe in my thoughts and ideas directly, or take them literally… because I’m not pharma, but to at least consider them.

Before we get stuck into it I want to say that I’m not bothered how you refer to it as long as the context remains the same in the fact that patients are placed at the centre.

During the last 12 months I have noticed that I’m not the only one to notice a shift into patient centric silence, or ‘slump‘ as Paul Tunnah Founder and CEO of Pharmaphorum refers to it and I give you his article to read below.

Patient Centricity appears to be disappearing in terms of conversation and being replaced with digital this, AI that, person centric, human centric and even customer centric. As a patient who is trying to keep up with pharma and the drug development scene, medical devices, clinical research, biopharma and more… I find the levels of inconsistencies make it difficult to know what to call what?!

Remember, I am an advocate who is trying to get fellow patients, sorry people, to understand that pharma is changing into an industry that they can not only trust, but to work with as partners. It isn’t easy to do that when you don’t know what terminologies are the current ones to use, which isn’t made any easier by the fact different sectors of the industry, and company types appear to have their own languages as well. With memory issues to contend with a lot of chronically ill patients get confused easily! Also, they don’t speak pharma!!

Without intending to over criticize even the eyeforpharma Barcelona conference agenda uses the kinds of terminologies such as ‘human centred‘ and ‘customer centric‘. In my opinion it’s terms like these that contribute to why the term ‘patient centricity’ appears to have become less important, and more subdued, within the industry conversations of late.

Personally I know that different areas within the industry have different endgames, working processes and therefore require different approaches and terminologies. However, when you’re not familiar with pharma it can be complicated and people switch off when you try to explain to them why they should get involved. Don’t forget as an advocate it is part of my role to do that and I really do have first hand experience of people wanting to know more, but then just not keeping up with it all. Also, I am a patient partner myself, and the members of FibroFlutters, who choose to get involved when required for elements of research projects, are also partners.

Patient centricity has been aiming towards centralising their efforts around the patient, and yes, it’s great that there appears to be finally a shift towards words becoming action. However, I much prefer to be a partner myself and if that is what ‘patient centricity’ stands for in 2020 then bring it on!

Example of someone else’s opinion, Paul Tunnah from Pharmaphorum, who unlike me… is from pharma!

You can read via this link to an article by Paul Tunnah – Pharmaphorum, ‘Where next for patient centricity in pharma?‘ how he feels patient centricity seems to have fallen into a slump, and he discusses what companies need to do in order to deliver on their promises. You can read this article via the link below.

https://pharmaphorum.com/views-analysis-patients/where-next-for-patient-centricity-in-pharma/

Just a note to remind people that patient engagement (PE) and patient centricity are not the same thing!

Here are a few articles about patient engagement in pharma for our non-pharma readers, but also to remind our other relevant, medical healthcare, and pharma, related stakeholders about what it means and entails.

The importance of patient engagement

By Craig Bradley -January 28, 2019 https://pharmafield.co.uk/

Advancing patient engagement

Published in PharmaTimes magazine – October 2019

Making the most of patient engagement

22-Jan-2019 By Barbara Lopez Kunz, global chief executive, DIA

The practice of incorporating the voice of the patient into clinical development has gained significant traction over the past decade, and rightfully so.

https://www.outsourcing-pharma.com/ARTICLE/2019/01/22/MAKING-THE-MOST-OF-PATIENT-ENGAGEMENT

After evaluating my year of advocacy during 2019 it became clear to me that the term ‘patient-centric’ was beginning to get a bit blurred, as mentioned earlier, silenced out. The way that people are using other phrases such as human-centric, person-centric and customer-centric has been boring a hole in my brain all year and the reason why is because it feels like people are trying to be ‘politically correct‘ and therefore losing focus on what the end-game actually is.

Don’t get me wrong I don’t care what you call it as long as that end-game of improving patient outcomes is achieved. After all, the hope of personalised medicines is a driving force behind some of my advocacy and when said in that ‘context’ I find it used appropriately. It is very easy to jump onto the latest trending phrases, and terms, but if you don’t put them into the correct contexts then what’s the point!?

It is time for me to be honest about a few things and how I currently feel regarding patient centricity because right now it doesn’t quite have the same feel about it as it did back in March 2018.

Also, after spending this last 2 years, or so, getting used to the idea of being a ‘patient’ it has now become a myriad of other terminologies as, yet again, everyone has to have their own way of describing things.  This is of great annoyance to me as an advocate who feels that I have to refer to each one in order to be taken seriously and it even had me questioning whether, or not, patient centricity was still an ‘aim’, ‘final outcome’, or rather an ‘umbrella’ term for all the others, speaking of course about, person, human and customer centric approaches that have become quite prevalent of late.  It’s not really too hard to realise that as a presumption as someone looking in!

On a different note, as I previously mentioned though, the idea of patient centricity meaning patients are viewed as partners, recruited as partners then fantastic… but how does that place us in the centre? This is something that could be a discussion point in Barcelona!

With my mind full of inconsistencies regarding what to think anymore I decided to ask Paul Simms, Chairman of eyeforpharma, what he thought patient-centricity meant to him now, in 2020?

I’m often in email conversation with Paul about ideas and what’s going on, but really felt nervous asking him about this one!

Looking back to this article, published on eyeforpharma’s website Dec 10, 2014 (referenced below) that discussed patient centricity and ‘why pharma hadn’t achieved it yet’ is great and gives a sound backboard for patient centricity, something you can read and use to remind yourself about it.

Patient centricity: What is it – and why aren’t we there yet?
Patient centricity: everyone wants it; not everyone gets it. (2014)

Zuzanna Fimińska

https://social.eyeforpharma.com/patients/patient-centricity-what-it-and-why-arent-we-there-yet

At this point I kindly ask you to read this article about patient centricity from the eyeforpharma website, which was posted back in 2014.

Then I’d like everyone to ponder over what they think it means today?

What is patient centricity these days? Does is it still mean something?

or do you think companies are getting bored of it?

I’ve included a few other articles further down about patient centricity too that I feel are worth reading.

I felt a huge necessity to ask considering the changing pharma landscape, and use of new terminologies within pharma language.

What does ‘patientcentrity’ mean to Paul today, in 2020? (mentioned above)

Paul

“To me, I don’t think patient centricity has been achieved by many companies yet. Despite all the talk.”

“If you take a literal definition, that patients are at the centre of everything you do, then you have a very high bar: For example:

• To be patient centric, would you give every patient your treatment if they needed it, irrespective of whether they can afford it or access it? (For example, how developed are your access plans in developing areas, such as rural Africa?)

• Is every decision made at the company designed with the patient’s interest before the company’s interest?

• Does your company focus on patients before it focuses on scientific research? In other words, is it patient-centric or science-centric? Both models are difficult to co-exist in the same way that it’s difficult to have two centres of a circle.

The answers to the above questions are clearly no, yet I don’t think even patients (or people) would expect that because a company would quickly become unsustainable.

But I do think companies need to be more honest with their strategies. As companies mature, some will pursue science as their true vocation. Others will start with patients and work backwards. Of course, right now everyone is trying to be everything to all people, but just as when politicians try to do it and fail, this becomes a real source of mistrust and confusion.”

Via email Q & A with Paul Simms.

It is difficult to contest his answers really, in terms of business and making a profit whilst keeping everyone happy!  His response didn’t surprise me too much and he continued by explaining it bit further…

Paul continues…

“What we need is a balance, a pharma-patient equilibrium of sorts, what some people call a social contract (which is upheld). That social contract needs to be one between all key stakeholders, not just pharma and patients. Because until we have a system where health and wealth are truly aligned, we aren’t going to get anywhere. We need a system where a pharma company tries to do the MAXIMUM possible for a patient because that will provide the MAXIMUM reward.

We aren’t there yet, but simply by measuring the outputs (ie patient outcomes) rather than the inputs (number of patients treated), which we are doing more, we will get closer.

Otherwise we’re all just guessing and arguing and trying to be nice while not actually focussing on what matters, i.e. curing people.

The problem with data is that it’s private, it’s personal and it can be used for bad as well as good (and bad can include simply ‘advertising’). So, by definition it’s protected and siloed. By finding a way to make this data more fluid and accepted, and by realising we’re all on the same side rather than pharma vs everyone else, we will break the deadlock.”

Via email Q & A with Paul Simms.

After reading this response from Paul a few times to try and break it down, for the purpose of this eyeforpharma Barcelona Special, I decided that what Paul had to say was truly important, and also that I was in agreeance with most of it. Some of the points being touched upon in my original introduction that opens up this #efpbarca 2020 special.

I could have interrupted it and wrote my opinions in amongst it all, but I felt that it would take away some of the essence of what he wrote.

Okay, Paul gave me quite a great detailed answer to what he thinks about ‘patient centricity’ today, and one that is difficult to oppose.

My response…

Finding a balance is something that I have been advocating for, myself, as a patient looking in on pharma.  I’m still new to the world of pharma, and drug development processes, but am learning every day a little bit more.  In the short 2 years that I have been involved, and predominantly through eyeforpharma as a patient advocate and through my current work with Patient Focused Medicines Development (PFMD), I have witnessed a few changes, and more action than talking starting to happen, however it is still not enough. 

Issues concerning data sharing, data storing and how to analyse data without breaking privacy regulations are still major factors as to why things don’t seem to be able to progress. (Read Whose data is it anyway? link given below for one insight into this issue) Plus, as Paul comments ‘digitalisation of healthcare’ and the creation of so much data is clogging up ‘data-silos’ which need to be broken down for true patient centricity to be attained.

Article worth reading:

When cancer patient Pete started to look into who held records about his illness and treatment, mapping the journey of his data proved to be no easy feat.

Whose data is it anyway?

The problem with ‘data silos‘ is tricky and although I’ve made a brief reference in accordance to Paul’s answer I’m not an expert so cannot really delve into how to fix it as a problem, but I understand enough to say that it is something that needs to be sorted for the reasons that Paul explains. 

I’d like to add at this point that dealing with such issues is one way for companies to show some of that much needed responsibility, especially when it comes to data, data privacy and data silos! A great opportunity to boost your reputations!! If you have read the report by Reputation Institute provided in the introduction you will have noticed that Data privacy is high on the list.

Also, I can relate to the following that Paul says “…, for instance, “realising we’re all on the same side rather than pharma vs everyone else, we will break the deadlock” and it’s something I wholeheartedly agree with. 

It is no secret that I advocate for all sectors/elements of the medical and healthcare industries to work in alliance, as multi-stakeholders, to solve current day problems, collaborate with patients and one another to create new methods of meeting unmet needs, finding out what best practices are, how to communicate with one another in one language, and generally utilise each other’s skillsets together to provide better patient outcomes, customer outcomes, product outcomes etc, as well as solutions and efficient strategies.  This can help to break the deadlock and create a more balanced landscape, in my opinion.

Making patients as partners is common-sense when you consider it because we can provide you with so much information that you need as drug developers, and drug marketeers, the problem of what to do with all the data, how to store it safely and not break our trust by putting us at risk is of high urgency and something that I know you don’t need to be reminded about. I refer back to that ‘Reputation Trends’ report from the Reputation Institute.

Again I need to be mindful of ‘patient needs‘ and ‘company needs‘ and make reference to ‘Corporate Responsibility‘ once more. I must point out that respecting, including and generally collaborating with ‘all stakeholders‘ is one of the best ways to improve your status, as well as give your reputations another boost!

The Patient Engagement Track at #efpbarca is always a good place to tackle these issues, and to hear all the latest things that companies / people are doing to improve it.  However, all tracks have the potential to provide / generate new ideas regarding this, especially the Digital Therapeutics (DTx) and Digital Clinical Trials (RCT’s) that may prove to be complimentary.

In addition to what Paul says I’d like to say that as a patient with rare diseases, and multiple chronic conditions, and as a research advocate, data being siloed is of no use to me. 

Fluidity of data is essential to patients like me in order to get closer to more personalised medicines that will give less side effects and mean less pills to take, whilst preventing all those multi-morbidities that we endure as a result of all the medications we currently take. Using RWE and RWD will both surely help to pursue that endgame… digital or not!

Going ‘Beyond the pill’ is still as much of an essential component for discussion today as it ever was when it comes to patient centricity.

Article worth reading

Maybe the RWE and Big Data track at #efpbarca will help to develop ideas of how to combat the problem!  Alongside these two tracks there are the Digital Therapeutics (DTx) and Digital Clinical Trials (RCT’s) that may compliment them.

The notion of people losing sight of the fact that they’re aiming to cure people is another of those topics that I frequently hear as a patient advocate, but regarding drug pricing and not just related to data silo issues. 

It’s not an unusual concept when you consider the fact, we have become stronger as communities, we have spread our voices far and wide regarding our unmet needs and desires.  It is still firmly believed by many patients that, making money is the most important factor to pharma and, yes, whether we like it, or not, are offended by it as a statement, feel it is untrue…. It is still an irksome factor of pharma-patient relationship life.  Drug pricing is currently hot topic in many areas of the globe and hopefully something that can be settled within the early 2020’s. 

The Commercial and Sales, Market Access tracks at #efpbarca could bring forwards new ways to challenge these issues!

However, looking at the key themes for #efpbarca 2020 I’m unsure if some of the issues that Paul has brought up will reach the table for discussion, but there are always plenty of roundtables and workshops that you can sign up for which may give you the perfect opportunity to get your ideas out there and heard.

Obviously, I ask you to remember that I speak as a patient, and not as a pharma expert!