#ChronicillnessVOICE SPECIAL EDITION ‘PHARMA’ APRIL 2019 | eyeforpharma Barcelona review

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#efpawards and Pitching Day 11th March

The eyeforpharma awards are designed to recognise people and companies within the pharma industry who are truly making a difference, whether it’s through innovation, patient engagement, collaboration and even a life-time acheivement award, plus others. There is also an award for Patient Advocacy and although I didn’t make the final I was still invited to attend the ‘Awards Pitching Day’ by eyeforpharma Chairman Paul Simms and awards Director / Organiser Lucy Fisher.

The welcome that I received from Paul and gratitude for being there was lovely, the team was fabulous and the day was full of amazing presentations. What was really great was getting the chance to sit and chat with Paul for a short while and catch up with each other before the conference was in full-swing, a rare opportunity to discuss my impending panel discussion and also upcoming projects and the mini-magazine reviewing #efpLondon that spread like wildfire across the globe. It’s the little things like this that really make a difference to my confidence and being there alone, through my own choice, I was struggling with social anxieties… just a little to make me nervous! Knowing I was within a safe environment certainly made all the difference and I was made to feel that all week!!

For those of you that know me you all know that I’m not good at self-recognition and vying for awards is something that I find difficult so not getting through to the final was upsetting, but also a great relief. However, fellow friend and patient advocate ‘Teresa Ferreiro, breast cancer survivor, did get through to the Patient Advocacy final, with ‘Baby Beatles’, so to be there when she pitched for the award was fantastic, not just to hear her, but to be there as moral support too.

Teresa went on to jointly win the award with Catalina Cernica, Director of Health & Happiness Studies, LEO Innovation Lab, which is amazing and I am so pleased for her. Teresa’s health coaching and patient empowerment work really does make a difference for fellow female cancer survivors who wish to start a family and face the difficulties of conception after chemo, also health, advice and support regarding resources and places to get help. You can learn all about Teresa, and Baby Beatles, by following these links. Teresa founded the Baby Beatles organization  to help mothers without resources who have had cancer. 


Certified Co-active Coach (CPCC), executive coaching, patient empowerment. Speaker. 

A huge congratulations to Teresa from FibroFlutters.
European Prize – Patient Champion EyeforPharma 2019


It is no secret that eyeforpharma Barcelona is an excellent place for networking and I can honestly say that I met some brilliant people on the day who I got to speak to, and spend time with at other points during the time of the whole Barcelona conference event.

The team from Norgine were really supportive, especially Kym Jacks-Bryant, Global Digital Marketing Lead at Norgine – Leading commercial digital strategy. They let me join them during networking on the 11th at the Hilton, and also at the ‘W’ Hotel event on the 12th. A really great bunch of people who pitched a fabulous chatbot called ‘AVA’ at the awards, which I felt my groups followers could really make use of. This is something I hope to follow up with them to see if I’m allowed to share it, or not. AVA helps to give advice for IBD health and bowel related issues, it is user friendly and gives credible information, something that is important in the industry of patient and health advocacy. A huge thanks to the Norgine team ~ Carole


It would be incredibly rude not to mention some other key players from Pitching Day that caught my interest and made me think, ‘they’re worth watching’, ‘keeping an eye on’.

  • AVA the patient Chatbot – Norgine
    • Norgine used AI to develop a patient chatbot to provide timely, accessible information to help support patients.
    • Useful for people with Crohn’s. Diverticular disease, cancers, other bowel disorders for information and a reminder service.
      • Kym Jacks-Bryant, Global Digital Marketing Lead, Norgine
      • Veronique Segura, Global Brand Manager, Norgine
      • Hannah Thompson, Senior Central Medical Affairs Executive, Norgine
    • Nominated for – Most Valuable Patient Initiative

Watch this short video

Ava the patient chatbot – Norgine

  • Speak Your Migraine – Novartis and Health Unlimited
    • Together they built an online digital community to empower patients and improve dialogue between them and their Healthcare providors.
      • Dimitra Mastrantoni, WorldWide Associate Brand Director Migraine, Novartis
      • Brendan Manning, Account Director, Health Unlimited
    • Nominated for – Most Valuable Patient Initiative

Joint winner of Patient Champion Award

  • Catalina Cernica, Director of Health & Happiness Studies, LEO Innovation Lab
    • PsoHappy Project has changed how healthcare systems look at the impact of chronic conditions on patients quality of life. It also helped to influence health policies and treatment plans, thanks to Catalina Cernica.
    • Joint Patient Champion award winner with Teresa Ferrreiro

  • Scott Williams Head of Patient Advocacy and Strategic Partnerships
    • Scott has many years of patient advocacy under his belt and has used this to establish a ‘first of it’s kind’ patient advocacy function within Merck KGaA that influenced global policies and changed the lives of both patients and care-givers, through coalition style advocacy.
      • I was grateful for the opportunity to speak with Scott and will hopefully at some point in the future be able to speak further about how we could collaborate on advocacy related projects. Being associated with Vanessa Pott, (our fireside chat moderator for Im-Patient care-giver panel), as her boss it was fantastic to speak to them both at the same time. Both involved with initiatives that are doing great things for patients.
    • Nominated for – Patient Champion

It was a great experience to see how the awards pitching day works so that in the future, if I apply and successfully get through to the final I know what to expect, how I will need to pitch my work and projects, and also how scary presenting might be for me. It is terribly off-putting, and whether I will ever be able to do that in that manner and context is something folks will have to wait and see…! Another mental health hurdle that I must face and jump!!


REVIEW: Impatient Barcelona 2019

To begin with I want to say a massive thank you to James Mackintosh, Product Director for eyeforpharma, for everything that he did to help the steering committee to design and implement the ‘Im-Patient’ Barcelona Conference.


Finding out that I’d made it onto the steering committee was a real ‘wow’ and I felt privileged for the opportunity, so I did throw myself into it… literally!

This ‘steering committee’ experience was huge learning curve in many, different, ways, some positive and some, really, bad. However, it was brilliant to be part of the committee and to work with like-minded advocates whilst we designed the agenda, but it didn’t come without hurdles and negativity. Afterall you cannot expect us all to want the same things, or to agree on everything without a little debate!

Nonetheless, it’s the negativity that makes it all appear ‘sour’ to me and what has spoiled the whole experience. It hasn’t put me off doing it again, it has taught me a lot about conference design and what it entails. There is still much for me to learn and it was my first ever role on a steering committee and the first proper teamwork role that I’ve experienced in a number of years due to my social anxieities so I am celebrating the success of surving it.


Conference structure
Conference Layout and Im-Patient
Roundtables

It appeared that Pharma weren’t interested in ‘Im-Patient’! Poor Marketing / Lack of marketing are big factors behind it.


Regarding conference infrastructure, the way that ‘Im-Patient’ was set out with the roundtables being first, before the panels and speakers on stage, it made it difficult to open our conference. We were in a noisy EXPO hall with no platform, or microphone, and no-one from eyeforpharma to introduce us. After 2 1/2 days talking to people and speaking etc, I was losing my voice so not having a microphone was a problem because I could barely speak.
This was a little disappointing but things do over-run, plus unfortunately Paul went to the wrong room and missed us, which he has apologised for profusely.

In my opinion, it would have been better to have an opening speaker, and a panel and then have the roundtables.  Following that… the rest of the speakers and panels, and ending with a closing speech. Another option would have been to just have the roundtables after all the speakers, I suggest this because the ‘Pink’ patient track room was at the other end of the long corridor of the conference centre, and quite a walk for people with mobility issues, such as myself, and many of the other Im-patient steering committee members.

As mentioned earlier the Roundtables were ‘located’ in a zone which was very noisy, and distracting, next to the coffee station where attendees would stand and talk.  Aside from that the general noise from the EXPO hall ‘per-se’ was distracting during the roundtables, especially when someone speaking on the microphone on the Innovation stage at the other end of the hall.
An oversight left us with a lack of audio and microphone which meant we couldn’t open the sessions properly, or, have someone going around the tables for take-aways afterwards.

In my opinion, regarding conference design, one suggestion would be to close it off with some type of Gazebo canopy for noise reduction purposes, or to move it out of the EXPO hall altogether. The room is huge with very high ceilings, which is why sound carries as much as it does, the canopy would help to deaden it a little especially if it were to have sides attached to it as well that could be easily rolled up so that the space could be used for other purposes when roundtables weren’t occuring.


Im-patient summit Roundtables

  • Creating inclusion across country, language, culture and ethnic barriers – the evolution of patient story telling
  • How to improve ethnic representation in clinical trials
  • Discuss best and worst case examples of pharma-patient group collaboration
  • Disjointed relationship between pharma and med-tech and impact on patient lives
  • An in-depth look at the efforts made in pain management and how we can better create access to physical therapies
  • The changing space of patient advocacy/organisation corporate responsibility (CR) as influence, regulation and onlookers increase
  • Building an experience-based framework to accelerate the growth/improve chances of success for start-up patient groups and organisations
  • It’s raining digital applications – increase use through more targeted collaborative effort, driven by patient need

Roundtable facilitators included:

  • Rick Harris, Patient Advocate & Ellly
  • Henny van Zuidland -Ordelman, Patient & Advocate
  • Alan Thomas, Ataxia & ME
  • Andrew Spiegel, IAPO
  • Carole Sian Scrafton, Fibro Flutters
  • Linda van de Vliert-Duijts, Patient & Advocate
  • Birgit Bauer, Patient & Advocate

Pharma failed to show up

  • When asked if I could share the roundtable sign up link for ‘Im-patient’ roundtables I was informed that I couldn’t market them.
    • It was for a good reason due to only attendees being allowed to register for them and keeping the process easier to manage for eyeforpharma staff.
    • However, considering no pharma reps signed up for them I am slightly peeved.
  • There were no pharma reps on the tables taking part in the discussions due to the first point above!
  • Not knowing what we could share and post across social media was indeed frustrating for me considering I’d spent so long promoting the event across my own social media channels, naturally I wasn’t the only committee member to feel this way. Being so close to the conference we should have been posting as a committee / team to help raise awareness of the event, and via ‘Im-patients’ own communication channels.
    • There was not enough time to promote it!
      … due to the lack of social media channels which didn’t get set up and utilised.
  • Fortunately, I re-structured my roundtable to fit the people who did sign-up and we still had a fabulous discussion regarding CR and pharma.
  • After the roundtables I went around each moderator to get feedback and they each managed to have great discussions… without pharma.
  • What is the point in setting pharma an agenda for them to ignore us?
  • Sharing the link to our roundtables was not allowed so how were we supposed to get pharma to sign-up?
  • Overall great conversations were had, but no-one has given summaries, or take-aways, so they have become a pointless exercise!
  • Solution would be to communicate better between the committee and eyeforpharma well in advance so that rules are laid out for what we can, and cannot do, regarding promotions and marketing.
  • Solution Create the steering committee earlier and start planning earlier

Round-table: The changing space of patient advocacy/organisation corporate responsibility (CR) as influence, regulation and onlookers increase.
Moderator: Carole Scrafton

A bit of background:

In London at the eyeforpharma Patient Summit I spoke about how ‘Corporate Social Responsibility‘ was making a comeback. Only it is now called ‘Corporate Responsibility‘ as all things are now to be respected meaning all stakeholders as well, companies don’t just have a ‘social responsibility anymore.

As people with diseases and chronic illnesses, or patients for short, we have become less trusting of pharma and in order to regain our trust they must make changes as an industry. Patient engagement will be difficult if we aren’t interested as patient groups, or organisations.

Also, as advocates we come under scrutiny all the time about what constitutes a patient expert and winning fancy awards appears to be the way to prove ourselves to pharma, and other healthcare industries. Why?!

My counter-attack, as a ‘patient-expert’, is to say that if we as patient experts have to be validated in some form, or another, then so should pharma. The way that I think they could, or should, do it it is to start rebuilding their CR policies and their reputation’s and start getting validation because then they will become more desirable as companies and more attractive to patients so they will be more likely to want to engage.

Also, 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 #notjustpatients.

Is it time now for pharma to get validated?


You can check out what CR represents today by following the button link below:


The discussion:

It was quite a subdued discussion compared to what I had hoped for due to poor sign-up numbers, for all tables not just mine!
So! we didn’t get the opportunity for a feisty debate, which is what I had been looking forward to. There were no pharma execs to debate with, and to be honest, this was the huge ‘negative’ for me because it was such a disappointment and it left me feeling cheated out of what I went there to do.

However, it was still a great conversation and I was pleasantly surprised to be sat with a bunch of lovely people who were all pro-corporate responsibility. We decided to change the course of the conversation and look at the new CR criteria and discuss which areas we thought pharma should address first. Well, there was no point crying about things not going according to plan, just create a new plan, adapt it to be better fitting!

Between us after weighing up the pro’s and cons of ‘CR’ and what should happen next we decided the following, with my thoughts added:

SOCIAL – Regarding patient engagement, and gathering patient opinions, pharma need to start involving patients throughout the whole process and begin to develop longer term relationships, or even partnerships, in order to build on trust and compliance.
Consider utilising patients as early as possible as they could prove to be beneficial during those earlier phases and hopefully lead to better continuity in the process, whilst also promoting good ethics.
Regarding socially responsible ethics and governance most companies should already still have some in place, so dusting them off and giving them an upgrade to cover ‘all-stakeholders’ and not just employees shouldn’t be too much of a problem.

EMPLOYER – This area of CR is quite important for many reasons because as employers your reputation will precede you!

Looking after your workers is not enough, there are other things to consider such as the CEO’s being charitable, supporting relevant causes and being seen to have everyone’s welfare at heart.

Regarding patient-centricity the employer must decide what it means to them, how will they define it, is it called the right thing? Shouldn’t it be person-centric not patient-centric? Are the companies and employer partners with genuinely person / patient-centric like they are? to reflect their commitment to putting patients / people first?
Building better relationships with HCP’s, finding better ways to communicate with them and people with chronic illnesses and diseases is also something to focus on.

The employer is the one at the top of the food chain and the one that people will look at so looks are very important. Their ethics must reflect a respect for diversity and equal opportunities, respect for showing responsibility and generally good governance towards all stakeholders.

ENVIRONMENT & SUSTAINABILITY – Well these areas are just plain common sense and should always be up there as responsibilities any company has, #notjustpharma. Taking care of the environmental impact your company has will show a huge commitment to CR, especially at a time when this topic is hot on the agenda everywhere across the Globe.

Ethics and Governance regarding environment and sustainability should be of high priority!
Citizenship scores reflect how environmentally conscious your company is, what your carbon footprint says about you and also how you are enhancing the world by respecting such issues. Naturally transparency is key here.

Recycling, selling on waste materials such as off-cuts, left-overs, or products created at some point during your company’s processes, that could be used somewhere else building partnerships with companies that work in sync to yours, utilising skillsets that are already there in your company, or one of your partners, stakeholders… again! “Why have a dog and bark yourself?”

It would have been great to have more to give you to read on this topic, and this discussion, and I really do hope that I get the opportunity to take it up a peg and get to debate it out properly with pharma sometime. Who knows? It might get taken seriously!


“Not one single pharma exec signed up for our roundtables, I’m disgusted by this!”

HOWEVER

“The quality of speakers, content of presentations, and subjects of panel discussions were commented on with great positivity, and high regard.”


“I speak for myself!
I am always just ‘myself’. “
Carole ‘candidly’ commenting


Alan and Carole on Monday night meeting for the first time – we had quite a giggle throughout the week even though we were both busy ‘schmoozing‘ the conference, and networking quite fiercly. Great bloke to ‘wobble‘ around with… and I did plenty of that!

Topics, Speakers and panels

Our speakers and panels are what made the ‘Im-Patient’ conference in Barcelona and we were fortunate to draw some fabulous people to take part.

We have James to thank for arranging for them to join us.

General feedback from talking to people afterwards, and on 14th, was that the discussions were ‘really’ good, and the speakers portrayed their messages well across the audience.  Plenty of questions were asked and answered.

The quality of speakers, content of presentations, and subjects of panel discussions were commented on with great positivity, and high regard.


Im-Patient gave me the opportunity to meet ‘Ruth Wilson’ and ‘Richard Stephens’ two people who I admire for their mindsets and the way that they fight for patients.
Getting to see and hear ‘Lode Dewulf’ again is always a bonus and knowing that we are still in tune 12 months later is fabulous.  He is such a lovely man and I love listening to him speak. A valuable voice that many people admire.


Ruth Wilson opened up the Im-patient stage >>>

Societies perception of health is broken – let’s build a new one
#PersonBeforePatient initiative is changing societies perception of what health means.
A fantastic presentation from Ruth, who only last year was at #efpBarca as a Pharma exec, this time she spoke about a secret she’d eem hiding… she is a ‘patient’ with a rare disease. Sorry! she’s a ‘person before patient’ helping to change how people view health, view their own own health and the impact it makes. Looking beyond the therapeutics and deeper into the value of ‘self’ and ‘healthcare’ what do they mean, to you the patient, and to pharma?

  • See how the #PersonBeforePatient initiative is changing societies perception of what health means
  • What does this mean to both patients and pharma beyond current therapeutic realities

Ruth Wilson | Co-founder & Director | PersonBeforePatient


Many people took part in the ‘Story of Health’


The topic selection was ok and covered some key issues, but I felt that we could have offered more in relation to issues that were highlighted in London at the Patient-Summit.   Keeping the continuity going would have been preferable so it annoyed me as a committee member and as a business professional.
Data sovereignty, GDPR were discussed, and even BREXIT got a dismissive mention, carer voice and it’s relevance to pharma, what are carers?, what do they do? Who are they? youth carer voices talked about the pharma ‘generation-gap’ and attendees got the opportunity to explore their personal health journey’s with Ruth Wilson and Carla van de Gucht with their ‘Story of Health’,


One of those discussion areas from London, in October, that did get brought to #efpBarca was ‘carer-voice’, and I review it in dedication to FibroFlutters Founding Five Member, ‘Sonia Hawkins‘, who due to unforeseen circumstances did not get to attend the event and take the stage. It was her voice that I pushed forwards to the steering committee, her ideas and thoughts as a ‘patient-carer’ and I know that she will be happy at how the Fireside Chat turned out. Very upset that she couldn’t make it and had left a hole in the panel, I felt it would be a nice honour to share what happened. See the next section!


Carer Voice

It was brilliant to get the voice of the care-giver out there to pharma and I’m content at knowing now that it is being considered as valuable.
The Fireside chat was excellent at explaining what the role of a care-giver is and the types of carers who exist and how, why their voices are important when considering things such as drug adherence and general patient healthcare.  
The youth panel was just as good and very energetic with their questions and answers. However, regarding that gender gap their needs aren’t really any different to that of those of us who are older.

Lode DeWulf, Mieke Kerremans, Nicholas Brooke and Panel Moderator Vanessa Pott | Matt at the end was not on the panel

Fireside Chat

Fireside chat: Improve patient adherence with greater collaboration with carers

  • Learn how better to work with caregivers to collect data and insights on the patient journey
  • Discuss the vital role collaboration with caregivers can play in communicating and working with patients
  • How to incorporate carers into clinical trial recruitment processes to enhance timelines and accuracy of patient profiles

Lode Dewulf | Carer | Chief Patient Officer | Servier
Nicholas Brooke | Parent-carer | Synergist & Co-Impact Catalyst
Mieke Kerremans | Parent-carer to children with very rare disease
Moderator: Vanessa Pott | Director, Patient Advocacy and Strategic Partnerships, Merck Merck Group


This panel discussion is one that I personally proposed on behalf of FibroFlutters and our Founding Five Member Sonia Hawkins to highlight the need for pharma to listen to carers.

The discussion began with a short introduction explaining who everyone is and their connections to world of care.
Lode is a long-term care-giver to his elderly mum and he also volunteers at a local Old People’s Home. Nicholas Brooke is a parent-carer for his son who has cerebal Palsy and epilepsy. Meike is a mother of two children with very rare disease and spends her time as a full-time mum-carer, and Vanessa cares for her adult brother who also has a rare condition.

After the introductions Vanessa asked Lode to discuss what and who a carer is?
Lode went on to tell us that we are referring to the ‘unpaid’ carers such as siblings, family and friends who have an important role but go unrecognised. Their roles involve more than just bathing and feeding the patient, or people with medical health problem, or the elderly. Their roles also involve grocery shopping, taking their loved ones to appointments, paying bills and dealing with all the emotional aspects for the patient, but also for themselves. It doesn’t just involve immediate care.

Vanessa then posed a question to Meike, why is it important to pay more attention to carers?
Meike tells her journey without support when she really needed help when trying to sort things out for her children. She had to find things out for herself and figure out her childrens dietry requirements and what food they could and could not eat, all by herself with no guidance from doctors, or pharma.
The illness that her children is so rare that there is very little information out there and what is out there is too complex to understand, or in English and being Dutch she couldn’t understand what she was reading. This is yet again high-lighting the need to do something about language, jargons and translating research into lay language. A universal language would be fantastic and to hear it come up again, and again, throughout the course of the whole eyeforpharma conference as well as Im-Patient proves that there is a need for it.
Meike did eventually find a pharma company to help her make the enzymes that her children need in order to be able to eat food properly, but she had to travel long distance to get it and the assistance from specialists. Carers are the people in charge of other peoples health, their medications and dosages, as well as feeding and bathing, etc. They know a lot about the patient and can give so much information back to pharma if they were involved.

Vanessa’s next question went to Nicholas Brooke where she asked him if he had seen any evidence, or efforts that focused on carers?
Nicholas gave us an explanation of what he suggests as a definition of intention to include carers with regard to Patient engagement and said in theory the answer is yes, but in practise it’s no. Where companies are thinking about including carers the answer is yes, but when it comes to putting plans into action the answer is no.

The next question that Vanessa put forward was to Lode, regarding pharma, where do you see key areas that they should be looking to carers for?
Lode answered by stating that pharma need to recognise what the care-giver role is because as an industry it is still waking up to reality. They already know that patients are fantastic experts, and actors, with their own illnesses and are reliable for information and they can get a lot from them.
However looking into people without symptoms, or people without a medical condition seems ‘odd’. He explains that people don’t have conditions but families do, meaning the family are all care-givers at some point to the family member who is sick and they are likely to know more than teachers, or, doctors, because they spend more time around the family member who is sick.
Pharma need to understand that carers can tell when something about the patient has changed, such as not taking medications, or is even getting better from something.

The next point that Lode makes is with reference to stop calling us ‘patients’, but ‘persons’, another key issue brought forward from London and has been echoed throughout the course of the week. Another great point that Lode brings to the table is that when you ask a chronic patient what can you help them with they will answer provide support for the people who care for me. The ‘carer’s technically have ‘unmet needs’, which as Vanessa stated… is common sense.

Vanessa went on to tell us about Merck’s initiative with MS and the ‘International Alliance of Carer Organisations‘, (IACO), where they surveyed 1000 carers across seven countries. Results found that many of them had no support and had developed emotional and financial anxieties.

Discussing Unmet needs of carers the panel tell us that there isn’t one-size fits all as there are different types of carers with differing needs and problems in accordance to disease and disease status of the patient. There are parent-carers, child carers, Senior carers of their adult children siblings, cousins and friends so setting out a plan for meeting unmet needs of carers will have many issues to address.

A question from the audience by Richard Stephens, Consumer Lead and Chair of Consumer Forum | NCRI – are there any examples of industry helping carers?
Vanessa immediately answers with IACO and MS addressing the carer unmet needs such as not being incuded in discussion about the patients health, being ignored and dismissed not geeting support to help them when the patient gets a diagnosis, how can they cope, or even do something to help the transition easier for the patient. She tells us that Merck have inserted carers into their MS programs but the study is young and there isn’t much to digress with yet.
Nicholas began by telling us that in his own experience when his son developed epilepsy finding support was difficult and filled him with fear. It was through Lode, and peer to peer help, that he was given the resources for the help he needed. Lode was chief patient officer at UCB a pharma company who happened at that time to be working with epilepsy. After seeing many consultants, and doctors, not getting anywhere not having any support it was kind of ironic that he eventually got the help from pharma. He said that this as close as he has come to seeing evidence of carers being involved.

The topic of drug adherence and pharma was brought into the discussion by Lode where he says that pharma could help with this through talking to the patients but in a lot of cases it is the carers who are in charge of medications. Pharma could be helping them to help the patient adhere to medication routines. Lode points out the umpteen Apps for reminding patients about medication time, apps specific foe one disease too but many people take several pills so they end up with too many apps. Again this is something that I brought up in my panel discussion as did Melanie Capewell. One app that covered everything would be tolerated better by patients and carers. Vanessa told us about ‘Jointly’ an app for carers by carers.uk that is not disease specific, it really is time to break the silo’s.

Another question from the audience regarding implementing solutions in pharma and the need for KPI’s being aligned with short and long term goals. How hard is it to create KPI’s around the unmet needs of carers.
Did you take your meds? A common question that carers ask, Apps are always geared more towards patients, not carers, but could do with a KPI related to an app that connects the doctor, patient and carer so that they are all kept up to date and in the loop. Again something that has been said elsewhere during the conference.

Well that was an amazing discussion and a lot was brought forward for pharma to take notice of. I am proud of the panel and very happy with how it played out on the day. Being involved with it’s devlopment I had a natural nervousness, but I knew we had a good set of panelists even when two of them joined the panel last minute when Sonia ‘inadvertently’ couldn’t come to Barcelona… last minute! James Mackintosh, of eyeforpharma, really was a superstar!

It would be great to see this conversation continued in London where we try to identify those unmet needs and figure out a few KPI’s for pharma to work with. I will sit and hope, with my fingers crossed, for it to be considered.


Youth panel
Addressing the needs and wants of young patients and how to engage.


Andrea Ruano, Linda Van de Vliert – Duijts, Mieke Kerremans & Brad Gudger providing valuable insight in to how to engage with younger patients

This discussion involved the speakers addressing how they view that they are noticed and taken care of by pharma as young patients. What their needs are, what do they really want to happen?

Patient engagement would be a great start for younger people with chronic health problems in order to find out how to help and support them better. To stop leaving them out of the loop regarding disease information, which should be written, or produced, in a format suitable for the younger generations.

Mieke and Linda were both being the voices for rare diseases and addressing the lack of support and information regarding the conditions they deal with. Linda pointed out that even though her disease is rare and there isn’t much that pharma can do regarding providing information they could still be there for them in other capacities, but I’m unsure in what ways were meant. Linda requests honesty about her condition and what to expect, younger patients don’t always get given all the information, but they do want more.

Andrea spoke about the lack of support after the cancer even though she’s still classed as a patient. Where were the doctors and other patients for a support network. Lack of information for younger people that is easy to read and engaging, meaning research papers aren’t what children want to read. Make it more attractive to read, not necessarily fun, but brighter and more engaging.

Brad being the diplomatic voice of youth asking for young people to be taken seriously as partners by pharma, build networks with proper safe-guarding policies. Language needs to be right for engaging with the younger patient populations and finding them on the right media channels such as social media. Providing access points for young people to find where they can engage. A lot of forums are off-putting for younger patients or have policies that do not allow people under the age of 17 for instance.

A key point to consider was whether children would have a voice for themselves in the future?

All in all this panel didn’t really establish anything different to the older patient generations… personal opinion, especially regarding Language, language language… it really needs to be made universally friendly and easier to read and understand. I have written about this for my panel discussion where I candidly asserted the need for a universal language and for someone to step-up and take charge of starting it. Clearly a topic that we are a united front on!

They want more information just like we do, but for me the question is…
Is it wholly the responsibility of pharma to produce the information?

I found that the conversations were quite ‘insular’, closed and didn’t really dig deep enough into the unmet needs of younger patients / younger people with medical complaints, or diseases. The idea of children taking more control over their own healthcare was discussed as Ruth Wilson highlighted because it is becoming the norm, no, she didn’t directly say that but you know what I mean! She did say though that within pharma and the medical healthcare industry per se, “A patient is patient regardless of age, or gender”, so it’s a question of how do you address that?

With reference to closing the gap between the ‘young’ and ‘pharma’ it is evident that ‘collaboration’ between patients and pharma, and all other stakeholders, to produce, or rather ‘co-create’, the information that they want is essential, not that it got said! but it was certainly implied!!

I remember as a thirteen year old girl being told that I mild scoliosis of the spine, which saw me being referred for physiotherapy and that was that, in fact it has been ignored for the rest of my medical history, and disease history. I wasn’t given any information other than the advice from the physiotherapist. Surely, it is not like that in this day and age, I’m certain that information does get given, although children are usually deemed too young to understand the medical side of things, too sensitive to hear the raw reality of their disease, which is why the information doesn’t get handed out. Well it does, to your ‘parents’, or ‘legal guardians’ and it’s their choice to share that with you because by law they are your voice until you are 16, or even 18 years old and reach adulthood yourselves.

The message was clear, language needs to be addressed, children and younger people with cancer or other chronic, rare diseases want to be more involved and more informed about their conditions. They would like more support even if their condition is super rare and the doctors know as little as yourself. Definitely a discussion that could be continued at another time to assess what the unmet needs of younger patients actually are, possibly make a great round-table topic for London Im-Patient in October! If there is one!?


Matt, Carole, Elly, Birgit and Alan – Steering committee members at the end of the conference

In summary

  1. Regarding being a steering committee member there were a lot of communication issues, and breakdowns, with respect to sharing information, and just keeping in touch.
    This couldn’t be helped due to the fact that we all do other things so were incredibly busy. #notjustpatients!
  2. Regarding ‘Impatient’ it was a necessity to set up Social media channels, but sadly there just wasn’t enough time to sort them out properly.
    This had an adverse effect on marketing the event before the conference.
  3. Noise was a distracting factor for round-tables, a solvable problem!.
  4. We did get great feedback regarding our speaker choices and panel topics.
  5. We projected several key messages during the panels, including carer voice.
  6. In my opinion, there wasn’t enough time to prepare this conference, the committee should be selected earlier, and, begin work sooner.
  7. Personal experience Negativity, negative atmosphere, and animosity created out of ‘misunderstandings’ and lack of ‘common-sense’, or plain ignorance, at times was over bearing.
    Nothing to do with eyeforpharma!
  8. There was a distinct impression that neither eyeforpharma, nor pharma were interested in ‘Im-Patient’. This was upsetting for ‘Impatient’ after the work that we had all put into it, however, ‘impression’s’ are often mistaken and misunderstood.
    It’s not that there isn’t an interest… it just wasn’t promoted enough! Solvable problem!
  9. Personal experience left me feeling more negative than positive after the ‘Im-Patient’ Conference. The round-tables play a huge role in ‘patient-engagement’ at events so for these to not attract attendees was quite sad and a lot of healthy debate that could have happened… didn’t.
    Tomorrow is another day! We’ll just have to take them back to the next one… if there is one!?
  10. Suggestions of what to take forward regarding possible topics include ‘recognition‘ and ‘validation‘ through utilising the new CR criteria to regain their reputation, and patient trust at the same time.
    Assessing the unmet needs of carers, those who care for people with chronic illness, or disease – (Beyond the pill). Vanessa Pott would be a great candidate.
    Prevention is better than a cure! with the pharma landscape changing into a world of technology, apps and AI it would be great to see such technologies in action. Demonstrate how they will be the future of precision medicine. As patients it isn’t something you see being demonstrated in the patient track.
  11. Recognise person first, patient second, or in the words of FibroFlutters #notjustpatients. Also, bring back Ruth and Carla with their ‘Story of Health’, preferably with more space for them to lay out the path.

Please note that this is an evaluation of my feelings, thoughts and general opinions and not in ‘anyway’ meant to hurt or offend. Feedback was given back to eyeforpharma and everything said in this review has been said directly to the Chairman and his team so that improvements could be made.

Please also note that Impatient is still a baby in the world of conferencing and it’s design and development will continue to alter as it grows. All issues are fixable!

Thank you for understanding, and reading the review.


Carole – Patient Advocate / Expert
CEO / Co-Founder FibroFlutters
Steering Committee ‘Im-Patient’ Barcelona Conference 2019


Many thanks to the other steering committee members
and to Andrea and Elly for sorting out our conference leaflets


Im-patient Steering Committee for Barcelona March 2019


Matt Eagles 
Patient and Patient Advocate

Positivity activist & Head of Patient Engagement at HAVAS LYNX, Chair of Im-patient London October 2018


Carole Sian Scrafton 
Patient, Advocate and im-patient founder

Founding member FibroFlutters support group’s – Health / Patient / Research Advocates #notjustpatients FibroFlutters has a fabulous social media communications avenue / chronic illness portal for everyone, all stakeholders & #notjustpatients.


Alan Thomas
Patient and Patient Advocate

Founder of Ataxia and me – a patient focused rare disease support group.


Brigit Bauer 
Patient and Patient Advocate

Journalist, Digital Health & Social Media Expert, Speaker. EUPATI Fellow, Blogger.


Elly Aylwin-Foster
Patient, Advocate and Writer

Writer, digital strategist and lifelong patient with a career background in communications and market research


Candace Lerman 
Patient, Advocate and Of Counsel

Face of HR 1223, the OPEN Act, which would incentivize pharmaceutical companies to repurpose products for rare diseases


Andrea Ruano Flores
Patient and Patient Advocate

10 years cancer survivor after childhood diagnosis


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