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

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DAY 2 – 17th November 2018 – Panel Discussion for Patient Summit:


Panel discussion:


Candid patient perspectives on the good, the bad and the ugly of service design

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Other panelists:

  • Teresa Ferreiro | Patient Advocate
  • Trishna Bharadia | Patient Advocate | eyeforpharma Award Winner
  • Paola Antonini, MD, PhD | AISC Scientific Committee Member, Head of Clinical Research & Training Initiatives | AISC

Moderator: Paul simms | Chairman| Eyeforpharma

  • How do patients really experience pharma’s services?
  • Can pharma better build trust with patient communities to develop productive collaborations?
  • Innovation is supposedly the ‘silver bullet’, but where do patients really see the opportunity for change?

PUNCH LINES – Messages for pharma: 

As panellists we were each asked to provide a ‘punchy’ line for use as introductory slides. 

Naturally, I provided more, in fact four to be precise. It must be said that I did also give instructions to pick one of the four and let me know which one was being used.
Little did I know that all four would make it onto my slide. 

Later on there is a section that discusses those 4 statements of mine in more detail because I had brain fog issues that hindered my memory recall during the panel discussion.


Here are the messages for pharma from each of the panellists


Teresa

We need to build a real two-way discussion between patient and practitioner, to empower between patient and practitioner, to empower both of them and grant patients the power over their illness.


Trishna

Let’s discuss…… 
“CULTURE”
“COMPLIANCE” 
“INFRASTRUCTURE”


Paola

Meaningful patient involvement will result in better patient outcomes and the most appropriate use of drugs


Carole

1 – ‘Structure your infrastructure’ 
2 – ‘It’s time to educate in order medicate’ 
3 – ‘You know what to do’  
4 – ‘It’s time for doing and stop saying’




Please remember that I write this based on my own opinions, and the feelings that I felt whilst taking part.  My opinions are just that!  They are not necessarily the same as everyone elses’ as we will all have our own thoughts about what happened during this panel discussion.

What is a Patient Expert?


Just a few things to say!…


It was certainly a different type of experience than I was expecting, but then again, I don’t think anyone was expecting to witness what happened during our panel discussion.

The subject of what classifies a person to be a patient expert by one panel member soon got a lot of animosity and negative responses, not just from panellists, but from those in the audience too.

The phrase, “We must remember that Everyone is entitled to their ‘own’ opinion, whether we like it, or not”, is definitely an appropriate one to use with respect to this debate.
To be honest I did mention quite candidly that I’m not opposed to the term myself because I was ‘given’ the title not once, but twice, also a patient ambassador etc… they are titles that help to give ‘guiding -lights’ to people looking for support… a bit like lighthouses guiding in ships through the rocks in a storm.

What readers must understand is that this argument spanned across the whole discussion, it just kept creeping back in…
… right to the end.!


“There are so many disclaimers on my website that anyone who doesn’t see them obviously doesn’t care about them.

They are there to guide people, so they know what to expect from my site. One of those things is not to expect a medical professional’s opinion, or guidance, unless it is stated they are such.”



~ DOES IT REALLY MATTER? Carole, CEO FibroFlutters, MBS.



Does it really matter?


I mean, I am not a medical professional and have never claimed to be and one of the first things I said when I discovered that I was revered as a ‘patient expert‘ was in fact “I’m not a medical professional”. There is a reason for that! That is because the term does in fact accompany the professional medical person who is an expert with patients, or, is a patient themselves whilst being a professional.

No s**t Sherlock! Really!

Therefore, arguing over the ‘ambiguity‘ of the turn of phrase of something like this appears to be a waste of panel discussion time, and “what a confusing argument for an onlooker from ‘pharma’ who wanted to knowwho to trust‘ as a patient expert when they’re witnessing different types of ‘patient-expert‘ arguing about what constitutes one.”  ~ Carole

An argument that also clearly spanned beyond that panel and possibly before it even began. Call me ‘old-fashioned’, but, there’s a time and place for such ‘banter’. It is this opinion, which stopped me from opening my mouth and jumping into it, something that both my colleague Sonia Hawkins and Chairman Paul Simms were mightily impressed at. Yes, that is correct I kept my mouth shut and my criticism probably wouldn’t be so harsh if it had ceased when the Panel Moderator, Paul Simms, asked it to stop.

Neither answer was wrong, because the term, also, applies to patients who are long-experienced with their conditions, people like me, my fellow panellist Trishna and many other long-term chronic patients. I do understand the potency of exaggeration that you can get from people, who are within communities, who aren’t experts that claim to be. In fact I see it everywhere, but isn’t it part of our responsibilities as ‘patient-experts’ to help guide pharma away from those people?!

There are so many disclaimers on my website that anyone who doesn’t see them obviously doesn’t care about them.  They are there to ‘guidepeople, so they know what to expect from my site. One of those things is not to expect a medical professional’s opinion, or guidance, unless it is stated they are such.

Incidently, Paul Simms did comment afterwards that in the 16 years of running that conference he has never experienced such a frenzied patient panel before…

Well they do say there’s a first time for everything!


Education for all stakeholders clearly required


“what a confusing argument for an onlooker from ‘pharma’ who wanted to know ‘who to trust’ as a patient expert when they’re witnessing different types of ‘patient-expert’ arguing about what constitutes one.”


~ Does it really matter? Carole, own opinion!



As you can see by the photo below the topic for the panel was in fact ‘Candid patient perspectives on the good, the bad, and the ugly of service design’, and not, ‘what classifies a patient expert?’ 

Although many found it to be an interesting ‘squabble‘ it actually had only a little part to do with the discussion directly, yes definitely worth mentioning, but not scrapping about. I don’t think it’s left a tainted mark, or anything as such, but it did take time away from what the panel discussion was about and left two of us sitting like ducks…

… quack quack!!
Twiddle the thumbs for a little while.


However, it is worth mentioning as I just said above.


As pharma companies – in order to get credible data from patients you want to go to credible sources. There are many ways to ensure that they are.

As companies you check the candidates out just the same way as you would do a job applicant, well at least being a business professional that is how I would do it. Surely, it is common sense to do that!? and stating the obvious is something that bores me intensely, along with having to repeat myself!

All in all our panel discussion was very insightful end to the conference where peers argued with peers… and not pharma!

I’m sure that in amongst the squabbling that the key messages got across but like most, things you can never tell with these things and I can’t remember half of what got said because it got clouded by the argument, and I was already having issues with brain-fog that day.  I have of course listened to it all since so I have been able to refresh my brain before writing this mini-magazine.

However, seriously though! we all had the same messages to shout at pharma, all of which I pretty much shared during my turn to address the audience, which you can read further down this article.

Clearly, education is of high priority for everyone!

Teresa pointed out about ‘aftercare’ for patients recovering from cancer treatments / surgeries and how patients could be better educated before leaving the hospital.  It would more likely make them return for follow-up appointments and stick to future trials if needed.  Give the patient the information they need in order to survive life after surgery especially if they get the all-clear after agonising long spells of time enduring multiple treatments and therapies.  They still need support so education before leaving the hospital is quite a vital tool for a patient.  Not only that, they tend to be forgotten about when they go home, there is no contact with doctors or nurses after treatment ends so for some patients it can be isolating and make them not go for follow-up appointments.

Trishna discussed how she feels that she doesn’t get enough time to respond to companies, about about the lack of clinical trial information from doctors, and it is something that pharma need to respect in order to win patients over!  Oh! and of course that she isn’t just a ‘patient’ but works as well as take part in advocacy jobs and is also a part-time celebrity who helps to spread awareness for the health condition Multiple Sclerosis that she has ‘long-term’ experience of… and the first eyeforpharma Patient Champion award winner in Europe 2018

Paola candidly expressed her own opinion regarding that pharma should  only be using ‘real’ patient experts, and, unfortunately it did not come out the way she possibly intended it to.  Personally, I wasn’t too insulted, but rather intrigued and I couldn’t disagree with her because she was partly correct.  However, it did draw quite a squabble to the forefront as it was battled out for a while. The key message was that involving patients more would help to lead to better outcomes for clinical trials if patient experts of those specific disease areas  are involved in the beginning. Paola also stated about problems with medical information and HCP’s transferring ill-informed information back to patients.

We all had a snippet to give the audience.


When it comes to drug adherence it is difficult not to have something to say as patients.  Tablets come in different shapes, sizes, and with differing rules.  You can’t just take them all in one go because some are with food, some not, can’t eat this for 3o minutes before, or after taking, blah, blah, and information leaflets that for some reason patients choose not read. Members are constantly asking about the meds they are prescribed , or just read about.  It is important though that they are receiving correct information, which puts a lot of pressure on my head as a support group leader.  It is easy to lead a horse to water… but you cannot make it drink!  I advocate all the time for members to speak to their local pharmacists about medications if their GP’s aren’t too forth coming.  However, not everyone is like me.

I have information booklets and leaflets for a variety of Musculoskeletal conditions and also some for our local ME group etc.  New members are always asked if they require information because it is an essential part of what our business is as an organisation.  It is what we strived to do so it is a natural progression to become a place for resources, or where to locate resources.  Why did we do this to begin with?… because information was seriously lacking when being diagnosed.  However, we cannot give medical advice because we are not qualified so we can’t educate our members about medications ‘per se’, yes, we can advocate the necessities of drug adherence and point them in the right directions for professional advice, but that is all.


Another thing to take into consideration is the fact that patients read the huge lists of side-effects and nothing else!  They will make choices based on those, and, what their chronic friends tell them about their experiences with those drugs.  People will also tell you what they think you want to hear just to get what they want… are you recognising that when collecting and compiling data.

Education goes much deeper than people are recognising, and for me I need to get this message out there to all stakeholders.  It is now the responsibility of us all to collaborate, work together and find the best solutions for the problems connected to drug adherence and clinical trials.


Another key subject matter

Was of course the need to make sure that you are working with legitimate ‘Patient-Experts’ whether they be medically certified, or a long standing patients with decades of experience, or a blend of both. Many patient voices are often “just noise” as stated by Lode De Wulf during his closing speech. (This is covered above and I won’t say any more about it because I’ve already stated my opinion.)

To use social media, or not to use social media?

Well this is this argument behind sourcing legitimate patient candidates isn’t it? who is a patient expert, or ambassador that you know you that you can rely on to pass you to proper sources / patient pools, patient communities and organisations.


  • How do you want to operate as a pharma business looking for trial candidates?
  • What direction is best for you? Maybe social media isn’t the best way forward for your company, so what is?
    • How do you find out what is best for your company?
  • Have you thought about creating a patient platform to accompany your social media channels? A hub to contain the information you wish to keep contained.
  • Do you believe there should be one platform? and companies should stop just creating their own but pool together??

Recognise that we’re #notjustpatients

This is by far one of the most essential things, and is something we all agreed upon as well, some of us work, or are carers for others.

It really is astonishing how companies just expect us to jump when they say say jump and they give us a very small limited time span to complete a survey for instance.  More time should be given and companies should learn to be more flexible full-stop if they wish to engage with patients.  Don’t make the questions over complicated many of us suffer cognitive problems that can hinder our ability to understand things, brain fog, or memory recall from injuries etc, medicines can cause cognitive issues and is a well known side-effect to many of them that we take!

The main thing though that Trishna points out is the fact that we are busy people, even myself.   We don’t say it to be ‘martyrs’ we say it because people assume we sit about doing nothing but whinge about having chronic illness.  Well okay, there is a massive percentage of patients out there that spend their lives doing nothing but whinge.  However, there is a movement of patients which is growing bigger everyday that want to see changes happen for the good of medical healthcare, not just for themselves, but also for our future generations. 

Although I am at home doing what I do it doesn’t mean I’m not busy, I have gone from running a tiny support group to owning a social media network that is about to transform into a Not-for-profit SME, and all within 5 years. That hasn’t happened by itself, or just by my own fair hands either.  We are busy with life, busy with voluntary work, busy part-time jobs, busy raising families, busy caring for parents and chronically ill members of the family, busy looking after ourselves! Yet, we are still always there looking for ways to help improve the lives of the chronically ill.

“Carers have just as much important patient imput, but from their perspective, which to us is just as valuable as my colleague Sonia advocates as a patient-carer voice.”

Patient Voices

All stakeholders are welcome ‘as well as’ #notjustpatients

At FibroFlutters we encourage, and advocate, the need to open the doors to all ‘stakeholders’ to give the ‘double-entendre’ of #notjustpatients that became a slogan of FibroFlutters after the conference in Barcelona.

As patients we are “not just sitting at home doing nothing” and a strong message from my fellow panellist Trishna who works a regular job alongside the advocacy work she does.  Myself, well I’ve been saying it all year, I said it in Barcelona, and in London and most likely again repeat myself again in Barcelona March 2019.

Also, the need to be more responsible was also a key message, and corporate responsibility is one of my favourite topics so I did not talk about it anywhere near as much as I would have liked to.

“All stakeholder approach is something I advocate strongly for because of my desire to see multiple disciplinary centres for people with multiple chronic conditions.”


~ Carole, CEO FibroFlutters, MBS.

Basically, there are plenty of organisations out there with advocates like those of us who were sitting on the panel, and in attendance, who are ready and willing to help take pharma to the next level.

Well I know I’m ready to help… can’t hear the door knocking though!

When asked to give final comments my brain was fogged and been doing it on and off all day, plus it was also blinded by the argument so sadly, the audience got the ‘ugly’ side of pharma as a closing statement.

That statement being >>>

“I’m sorry, I said this in Barcelona in March, and I will say it again here today. Patient’s do not trust you as they believe you are only interested in money!”


Carole Scrafton, CEO FibroFlutters, Patient Voice, Panel Discussion ‘closing statement’, ‘The good, the bad, and the ugly of service design’, Patient Summit, London, October 17th 2018

And… that was that!

white oval medication pill beside blister pack
Photo by Pixabay on Pexels.com

Very nearly turned out to be a panel discussion about the good, the bad, and the ugly of patient advocacy!

Thankfully, it didn’t resonate that, and hopefully the audience got some valuable answers to take away and work with.

An interesting first time experience of taking part in a panel discussion that initially left me paranoid about my worthiness as a patient expert, patient voice and advocate. Luckily, I was surrounded by people who soon took that paranoia away and helped me to get my positive state of mental health back.


Would I do a panel discussion again?

Yes, and it is already in the pipeline for eyeforpharma 17th Annual conference in Barcelona, March 12th -14th 2019.

Would I recommend this type of advocacy work to my fellow patient leaders / advocates?

Yes, because it is the best way to get your voice heard and to get amongst the people that initiate the changes, nurture those changes and bring those changes to ‘real-life’.

Criticisms

It would have been good to have had a proper pre-conference meet up with the fellow panellists to discuss our viewpoints etc.

Pre-conference communications were often a bit lax for my liking with periods of time left hanging waiting for information.  However, the team at eyeforpharma are extremely busy and it amazes me how they put their conferences together. I have learnt a lot this year and understand that at times they are too busy, just the same as I can be!


eyeforpharma Chairman Paul Simms, Teresa , Carole and Trishna post panel.  Paola had to leave so missed the photo.



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