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


DAY 2 – 17th November 2018 – Interactive Roundtable – Im-Patient


Of course, my fellow #patientvoices all stand alone as fabulous people but when they/we are all together, boy! can we make the right noises to the right people at the right times.

The Impatient Conference proved that, and I feel proud of the Steering Committee for the work that they put into it, which was a ‘premier’ event on 17th October, and deserved the ‘standing ovation’ that it got.

The Im-patient Conference was also very well put together, designed and co-ordinated!

If truth be told!…

When this idea developed in Barcelona earlier this year I was arguing tooth and nail that America needed it more than UK & Europe.  “WHAAAAAAT!?” some folks regarded me as some kind of ‘traitor’ for not thinking we needed it here at much as they did over there.  It is the truth though, the system is far more messed up than here with patients committing suicide due to the fact they can’t live without the pain medications, opiates, that they have suddenly had taken away from them.  A political system that has been making some very strong changes to how patients can access healthcare and the medications that they need, okay, since March we have seen a lot of that here too.  A healthcare system, in the US, that doesn’t actually exist so really shouldn’t call it that, plus patients have to pay for it. Something that we are waiting to happen here in the UK, especially with the BREXIT fiasco that is and money being a huge issue regarding funding the NHS.   

Personally speaking I find people here in the UK to be too ‘apathetic‘, full of LOUD comments and requests but not prepared to get up and help create the necessary changes that they shout for.  However, in Amercia it is so bad that the rigour of patients to get the help they want and very much need makes them eager to push for changes, lobby governments for what they need.  My American buddies were all ‘champing’ at the bit to have such a conference and low and behold Paul Simms ended up taking it there!

I still firmly believe that my ‘All-stakeholder‘ approach is one of the the ‘key’ answers to patientcentrity and one which ‘kinda’ got attached to the Impatient idea back in March.  Lobby together as a united front to get governments to see that they also need to speak to patients and look harder at how to make drug legislations friendlier for pharma, HCP’s and patients.   

All stakeholders need to be person / patient centric in order to acheive this, but like everything else written this is just an opinion of mine formed through observations, and active conversations within communities across the Globe… so what do I know!?

It wasn’t an idea that I didn’t support, I just felt the location was wrong at that specific timing, regarding ‘priority needs’!  Being a harsh critic of course of my own homeland!!

The Steering Committee had a difficult task designing this conference with many things to take into consideration, but they did it!

KUDOS ~ goes to the following #PatientAdvocates, I’m sure you will all recognise a few names! And don’t forget Anza, the Project Director from eyeforpharma who did a marvelous job co-ordinating everything alongside ‘The eyeforpharma Patient Summit’.

Im-patient Steering Committee October 2018

Matt Eagles
Patient & Patient Advocate & Head of Patient Engagement at Havas Lynx, Matt inspires everyone he meets. This is Matt’s story of living with Parkinson’s.

Head of Patient Engagement at Havas Lynx, Matt inspires everyone he meets. This is Matt’s story of living with Parkinson’s.

“I’m not pissed! I’ve got Parkinson’s” 

WEGO Health Award winner for Patient Healthcare Collaborator in 2017

Simon Stones

An award-winning patient leader, advocate and researcher from the United Kingdom.

Award-winning Patient Advocate and Consultant
Postgraduate Researcher in Child and Family Health

Cecile Tardy-Srinivasan
Patient Advocate & Consultant | Healthcare/Pharma

Erin Moriarty Wade
Rare Disease Carer & Savvybassador

Inês Alves
Patient Advocate & Carer

Patient expert, Opinion leader & Consultant. EUPATI fellow. European Reference Network BOND patient representative

Richard Stephens
Patient & Carer

Consumer Lead and Chair of Consumer Forum, NCRI

Margot Vanfleteren
Patient Advocate / Expert in diabetes healthcare

The agenda was packed with many interesting things >>>

Open innovation – when patients come up with their own solutions

Roundtable discussions – Connecting patients with clinical trials

Stakeholder panel – Improve patient adherence by becoming a true healthcare partner

It’s raining apps! – Why your digital solutions aren’t as special as you think

Thought boards – What do pharma want patients to know? What do patients want pharma to know?

There were some amazing speakers who touched on these topics throughout the course of Im-Patient.  Sharing the voices of their own lives, and some the lives of the ones they care for.

Amongst the speakers, round table moderators and panellists were the Steering Committee Members plus, Andrew Warrington, Jess Mills, Dom Raban, Lisa Pape, Emma Lawton, Pooja Merchant, Axel Vanderperre, Emma Darcy Suttcliffe, Richard Stephens, Birgit Bauer, myself and Sonia Hawkins

Cecille, Matt Eagles, Simon Stones and the other steering committee members utilised the combination of their skills to perfection providing a couple of hours of very interesting things to learn from.

What did patients learn from it all? what did pharma learn from it all? Well I don’t know if anyone else is writing about it?! but it would be great if my opinion wasn’t the the only one writing about it… from a ‘patient’s perspective’.

A lot of the above topics were debated and discussed during the roundtables 
To hear it all in-depth as it happened and you will need to visit the ‘On Demand’ section of eyeforpharma website.

Post conference posing with Simon Stones

This is what Simon Stones had to say about Im-patient:

“Im-patient fundamentally changes the way industry operates, placing patients and carers in the driving seat. This was exemplified at the inaugural Im-patient Conference, which took place during October 2018 in London. Patients and carers are no longer passive recipients of healthcare, but are instead demanding to be actively co-creating solutions to our biggest healthcare challenges. Through spending just a few hours together, the benefit and possibilities from patients and industry working together was visibly clear. I hope that we soon move away from defending ‘why’ patients must be involved in all aspects of research and innovation, moving onto the ‘how can we best’ involve patients in paving the way to a brighter future for society.

Simon Stones, Patient Advocate & member of the Impatient Conference – London Steering Committee

My focus is on the roundtables as it is what Sonia and myself took part in as moderators

Day 2 – 17th October interactive Roundtables ~ Impatient


Win Patient Centricity Champions Techniques to assess the value of sustained support to patient groups and create internal support
How can we work with external organisations better to locate trial patients better?

Sonia and I both worked together to moderate this roundtable as part of the Im-patient conference, another first time event for us because in Barcelona we were facilitators. It was quite daunting to have such a level of control over the group of such ‘esteemed’ pharma Directors that we had on our table, and some of whom we recognised from Barcelona.

For me it was easy because I see everyone as equal so I just kept to that, but poor Sonia couldn’t believe it when I told them all off for bombarding me with questions.  Don’t get me wrong, the questions were all relevant, but it wasn’t the task that the Im-patient team had set for our table and I had to give three take-aways at the end of it! So asking them to ‘address my question’ to ‘them’, because it was what we were meant to be doing, is what I did.

Their faces must have said it all as I did that, jaw dropping experience for everyone at the table including myself.
Then, of course, they replied by saying – ‘ask your question’, which of course was the object of our task, ‘How can we work with external organisations better to locate trial patients better?‘ Naturally, I followed that by stating I would like them all one by one to give their view-points so that we could discuss them.

What did our table of Pharma Director’s have to say? 

Connecting with the patients
Win Patient Centricity Champions Techniques to assess the value of sustained support to patient groups and create internal support

Gaining patients’ trust is what they will need to do before engaging and introducing corporate responsibility into their business models will soon become a necessity if they wish to be taken seriously.  That’s right,… I say it again!  Corporate Responsibility is making a comeback and when I quoted the statistics from RepTrak there were a few sour faces, maybe guilt I don’t know!

Offering incentives is one way to keep patients interested but they don’t always work, do you pay them with money or trade data / information.  I think it will depend on each individual company you cannot expect them all to work the same way.  You could all work from one resource pot though.  Create one platform so everyone knows where to look for co-creators and clinical trial resource pools.

Photo by Pixabay on Pexels.com

It soon became clear that social media was going to play a large role in how pharma would find ‘patient champions’ as that is where we keep telling them to find us.

The questions of how to go about acheiving it were amongst the questions that were initially being asked of me.  The same questions, funnily enough, put to me the day before during the other roundtable which we particpated in. 

There are many patient registries, community platforms and groups / organisations to choose from.  From these areas companies can find patient advocates that could become their champions and work with them to help source patients for trials and to even help co-create.  Another option of course is for them to build / create their own platforms, which is happening already across the globe a great example for clinical trials is Antidote.me

  • Which social media platforms should they concetrate their efforts on? 
  • What method of communication is the best to use?? 
  • DO they issue surveys, or conduct face-to face interviews with only a select number of patients. 
  • How do they compensate them for their time and keep them interested. 
  • What makes a patient expert a credible resource?  There’s that question again
  • Do  they create their own patient platform, and invite patient champions to become members, to keep what they do within a closed environment?

There are many patient platforms available, patient registries, organisations and communities for pharma to access patients for market research and clinical trials, it is up to them to vet them for whether they are credible resources, or not.  

The following link takes you to our #SoMe Patient Platforms section of our website. 

The list is unfinished as there are still quite a few left to add, pharma platforms, research hubs as well as other social media health platforms from the likes of Mayo Clinic, ARMA, European Medical Journal, Siemen’s Healthineers The Pain Network, Psych Central, Patient, Health Unlocked and many more which I have connected FibroFlutters to during the course of the last 12 months….  

“Personally speaking keeping track of so many #pharma platforms is difficult. The idea of co-creating & collaborating to make one platform for all is quickly becoming a really good one!”

Carole Sian Scrafton, CEO & Co-Founder FibroFlutters, MBS

Take a look at this knowledge hub by The Arthritis and Musculoskeletal Alliance (ARMA)

Awarded to fibroflutters.com via Feedspot.com

Once they’ve found ‘appropriate’ patient champions and communities how would they keep them, utilise them, what is their purpose, what could they do to develop that much needed win-win relationship? 

Co-creative projects and collaborations will be essential to moving forwards, but only if their infrastructures are strong enough to sustain the weight of Social Media. 

Looking at the main drawbacks that came to the forefront flagged up the the fact that patients aren’t aware of clinical trials, or the processes that they involve so ‘education’ was going to play a leading role once the connection had been made. 

Education is also key in the world of advocacy and it is not being taken into consideration, well it is but not in the correct context, which in our opinion is what half the problem is regarding communication.  Not just the language / jargon problems.  Yes, education about drug adherence is essential, but  ‘for all stakeholder’s including those within the caring communities, patients and HCP’s, #notjustpatients.  However, pharma need to understand that they need to listen ‘carefully’ and not take things out of their context when analysing the data.

Therefore, Clinical trial awareness would need explaining, the value of them to ‘patients’, as well as to pharma, in order to develop better medicines and products. Everyone involved during the process needs to be re-educated with the new guidelines and research models so that it reduces the amount of bottlenecks that potentially could happen along the processs.  Of course as a business strategist I would recommend that!

Don’t forget our doctor’s could be doing more to promote trials, if they don’t make patients aware of them then they won’t know will they?!

Questions for consideration

  1. Whose responsibility is it for educating patients & their carers, about clinical trials?  Pharma, or HCP’s??
  2. Whose responsibility is it for educating patients & their carers, about drug adherence?  Pharma, or HCP’s??
  3. Do the patient champions work within the guidelines of GDPR, are they compliant? 
  4. Is accessibility to certain patient groups going to be a problem because of restrictive legislations?? 
  5. Do the patient platforms have enough transparency?
  6. Are they working with real ‘patient-experts’?  There’s that question again!
  7. What would be the exchange of invested interests be? drugs, treatments, or even thingas like investment into the organisation or group in other methods of trade resourcing?

So overall, the above pretty much tells you what was discussed at our table. Along with many questions about social-media networking, and community platforms,  because I have successfully managed to begin building a chronic illness portal for all stakeholders to utilise already. It’s my live ongoing project called FibroFlutters.  Everyone, must remember the issues surrounding GDPR and compliance of regulatory guidelines across the globe!

These key take aways were echoed through the other tables as well with education of massive importance, social media networking being essential and also gaining patient trust, how do they do that!?  Conversations about co-creation and collaborations as many companies are already embarking on such ventures, but is that enough?

Not to mention, working with expert patients and their communities building trusting relationships… mmmm they will have to sort out those corporate responsibilities to make progress there!

Roundtable Take-aways with Cecile Tardy -Srinvasan and Matt Eagles.

This is just a little synopisis of what they discussed in the ten minutes where they spoke about the Roundtable key take-aways.  What I have discussed above is with respect to the one roundtable that Sonia and myself moderated.

Cecile and Matt ’rounded’ everything up from all roundtables as each had a different discussion topic.  So, this is it… in brief.

Im-Patient Interactive Roundtable Discussions

  1. Patient preference
    Hear directly from patients on their preference for working with pharma clinical teams, and how do patients prefer to work with them
  2. Connecting with patients
    How can we work with external organisations better to locate trial patients better?
  3. Innovation with Patients
    What innovations can pharma introduce to make the traditional RCT more effective for end users?
  4. Pharma’s perception of patients
    How do pharma perceive patient and where do patients bring most value amongst HCP and doctors?
  5. Patients want to help!
    How can patients help pharma for marketing within the European regulations?
  6. Next generation disease awareness campaign and patient services
    How can the budget be spent more wisely for disease awareness and patient services?
  7. The best approach
    What is a patient friendly approach? What does that mean to patients?
  8. Link patients to pharma
    How can we achieve bilateral benefit by patients talking with decision makers to make change
  9. Improve relation through technologies
    Can new technologies like AI, AR and VR improve the way Pharma communicates?

In order to help co-create the ‘win-win’ relationship with pharma-patient the following things were brought forward during the above listed roundtable discussions

There is great interest from all sides to collaborate, co-create, co-work and engage towards creating better outcomes, for pharma and patients.  However, there appears to be a fear to move forwards with such engagements because of issues connected to compliance and regulatory frameworks, which do differ across the Globe.  GDPR being a great example to use here.

How do they deal with patients, empathy isn’t taught at school and it is important to know the person before the patient.

Companies will always have their KPI’s (key performance indicators) to acheive but they must remember people first not patients and patients will respect you for a person and not a title in return.

Again the utilisation of patient experts, that are people with expert knowledge of their own illnesses, will be quite beneficial the same as the person who is the expert and for who is a patient HCP that is an expert in patients, which most agree that a patient will always know more than the HCP.  It is important to remember to recognise patients as people first.  Or, in our case at FibroFlutters #notjustpatients.

It’s time to stop fearing the unknown because nothing new can be discovered if you don’t, a message to companies shying from taking the next move forwards.

All in all there was a great passion for building a shared purpose, to co-create and work towards making changes that will make the best impact towards successfully acheiving that win-win relationship.

“The passion to make change in this room is genuinely palpable”

Matt Eagles, patient advocate and Chair of Im-patient London 2018

Project Director for eyeforpharma Anza Asahara, Advocates – Axel Vanderperre, Sonia Hawkins, Cecille Tardy-Srinivasan, Simon Stones and Carole Scrafton (me), all looking exhausted post conference

Are you curious to learn more about Im-Patient? then why not visit the website

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

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

Page 7