My experience – First face-to-face event in 2 years!

Patient Centricity and Collaboration Global Congress 2021 – My experience

This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.

Getting ‘suited and booted’ felt like a novel thing after it being so long since I last had to do it. Thankfully the suit and jacket still fit… despite the pandemic pounds. It was good to feel like I was part of the scene again. Virtual events are not the same, I attended a lot those from my bed and often in pyjamas… couldn’t do that at this congress!

A number of friends ‘old and new’ have been name-dropped for their support and encouragement. Also, for the fact it really was amazing to see my friends, colleagues and peers in person.

Aside from that I also share a few take-aways of the content and discussions that happened with my perspective of the event.

There’s still so much to say!

Old friends and new

There was an awesome atmosphere filled with excitement because we were all overjoyed to see each other.

My excitement had been building for quite some time before the event. I knew that there were people who were going to be there that I hadn’t seen for two years. People who I had worked closely with, other advocates, friends and connections that I only get to see at events.

I was also going to get to meet some connections for the first time face-to-face.

Just to name a few!

Jocelyn Raguindin Conference Director at Paradigm Global Events who was a fabulous host, and after communicating so much via email it was lovely to meet in person. My good friend and colleague David Ross, a Rare Disease Advocate and co-founder of a rare disease mental health group for men. He experienced speaking at a real-life event for the first time as a patient advocate. Ash Rishi of COUCH Health who’s passion for diversity and tending to the needs of everyone is addictive. Professor Lara Bloom President and CEO of The Ehlers-Danlos Society and who works tirelessly for ehler’s-danlos syndromes and someone that I admire for what she has achieved.


Networking is so much more enjoyable and easier when face-to face. That is something that I heard many attendees say. Before the congress I said umpteen times that networking at online events just didn’t do it for me. To hear my colleagues and peers say the same was quite reassuring.


Getting back to normal was a little weird to begin with, the whole…

Do we hug or not?

Do we wear a mask or not?

Do we sit too close or not?

…was an issue for a short while, and soon forgotten with exception to masks in certain situations.


One very funny incident happened during breakfast when I heard an excited young woman say hi Carole I knew you were going to be here. I couldn’t wait to see you! The problem was that she was wearing a mask and so I couldn’t tell who it was, until she said it’s Claire Nolan, Patient Engagement Lead at MediPaCe. She is also a patient advocate supporting patient communities and organisations. She said I heard your voice and knew you were in the room at which point I laughed. It was fabulous to see her and catch up.


It was incredible to see how we all reacted when seeing each other, and yes, in some instances squealing with delight did occur.

After being quite isolated I had experienced a few difficult episodes of depression during the pandemic. Despite attending many events it did not feel like I was really getting to be socially active. Networking was not something I felt comfortable doing online… especially with strangers. I never invite strangers into my home at first meeting and it just felt like that was what I was doing. That feeling of there being an invasion of privacy.


At the event we were all on neutral territory!


There were many people speaking and attending that I couldn’t wait to see and I must thank them all for helping me to get the best experience during the event. For their support, encouragement and general friendships.

Seeing my fellow working group members from Patient Focused Medicine Development – PFMD for short was a great experience. We had worked together for two years prior to and during the pandemic and catching up was really fantastic.

Oleks Gorbenko, Global Patient Centricity Director, Ipsen / Natasha Ratcliffe, Research Involvement Manager, Parkinson’s UK / Thierry Escudier, Chairman, DCRIPT / Claire Nolan, Patient Engagement Lead at MediPaCe

And having Nicholas Brooke Founder and Executive Director The Synergist.org & PFMD.org as a panel moderator was a real pleasure.

A special mention to the following folks a mix of ‘old and new’ friends / connections, who in my experience, are all lovely people:

Pascale Cavillon, Global Patient Centricity Director, Ipsen / Liz Clark, Independent Pharmaceutical Physician / David Edward Rose, Ultra-Rare Disease Speaker (1 in 300 million), Rare Revolution Magazine / Mark Bradley, CEO & Founder of Visiblegy™ / PeopleWith™ / Lindsay Weaver & Josie Godfrey, Co-Founders & CEOs Realise Advocacy / Sandeep Bagga, Research & Operations Lead, MediPace / Lidewij (Eva) Vat, Researcher & Lecturer Meaningful and Sustainable Patient Engagement, Athena – Research and Education Institute / Sumira Riaz, Lead Health Psychologist, Open Health Group / Dr Jennifer Harris, Head of Research Policy, ABPI / Tara Whittam, Patient Engagement Lead, Novartis

Image – KEYNOTE PANEL: The Age of Advocacy: The importance of patient voice in the new normal

Patient Centricity and Collaboration Global Congress 2021: 
KEYNOTE PANEL: The Age of Advocacy: The importance of patient voice in the new normal

Panellists from the left: Victoria Hayes, Public Affairs Director, Kyowa Kirin / David Ross, Patient Advocate, Rare Disease Mental Health / Markella Boudioni, Patient and Public Involvement and Engagement Lead, The Royal Marsden NHS Foundation Trust / David Edward Rose, Ultra-Rare Disease Speaker (1 in 300 million), Rare Revolution Magazine / Moderator: Liz Clark, Independent Pharmaceutical Physician
Image taken by Carole Scrafton

Panellists from the left: Victoria Hayes, Public Affairs Director, Kyowa Kirin / David Ross, Patient Advocate, Rare Disease Mental Health / Markella Boudioni, Patient and Public Involvement and Engagement Lead, The Royal Marsden NHS Foundation Trust / David Edward Rose, Ultra-Rare Disease Speaker (1 in 300 million), Rare Revolution Magazine / Moderator: Liz Clark, Independent Pharmaceutical Physician

Image taken by Carole Scrafton

It was a real honour to be attending as a speaker and having the opportunity to voice a few messages that I wished to put across. 

For those who know me, I’m not shy at being insightful or being a provocative patient voice. I always look forward to participating despite the fact I have underlying anxieties and fears. Somehow, I manage to surpass them and enjoy the event.

On Monday I was a panellist on two panel discussions and I presented as well. I thoroughly enjoyed each experience despite the paranoia about whether I’d covered my points well enough. Something that always bugs me!

I provocatively posed


1) Patient centricity

This term has always implied that patients are centred to a point that we are surrounded by industry staring at us and picking off our insights when you feel like it. I know what it means and represents, but it isn’t correct! Okay, so I scrutinise the semantics of it but it is one that I share with others.

“We don’t want to be at the centre with you all staring at us – we want to work WITH you! We wish to be partners!”


2) Is it time for an industry standard for all stakeholders to follow regarding patient centricity, not just pharma? 

The feasibility to do this wasn’t there before, but there is now a wealth of patient engagement (PE) best practices guidelines and toolkits available.  These patient engagement (PE) best practices guidelines can be used to define and develop that industry standard through using multi-stakeholder / cross-functional collaborations and a cross-industrial committee to develop it?

Industry has made it clear that it needs to know that it is engaging with ‘expert-patients’, usually those who can prove their legitimacy through undertaking relevant certifications.

However, there is no regulated industry standard, yet, that gives patients the option to see which industry players are really hitting the mark with their PE practices. It would also let all stakeholders see who is using PE best practices and not just patients.


Example: 

  • Patients are frequently getting involved with companies to only be disappointed when their needs aren’t respected and no relationship develops after they discover the company sends out one survey and that is the last they hear from them. It is wrong for such companies to claim to use PE best practices and reduces the chances of patient involvement due to lack of trust.

  • It would be beneficial for such a standard, and industry stamp in order to begin highlighting compliance regarding meeting Patient Engagement Best Practices. Not just for patients, but in a world of multi-stakeholder projects it would benefit everyone to see who is worthy.  

  • A strategy to implement a regulated industry standard would improve the success of patient centricity for all industry stakeholders and not just pharma. It would help create a more balanced playing field.

Image – KEYNOTE PANEL DISCUSSION: Driving a successful multi-stakeholder collaboration

Patient Centricity and Collaboration Global Congress 2021 - My experience

Panellists from the left: Lidewij (Eva) Vat, Researcher & Lecturer Meaningful and Sustainable Patient Engagement, Athena - Research and Education Institute / Lindsay Weaver, Co-Founder & CEO Realise Advocacy / Carole Scrafton, CEO & Co-Founder Patient Advocacy Organisation, FibroFlutters / Lara Bloom, President and CEO The Ehlers Danlos Society / Moderator: Nicholas Brooke, Founder and Executive Director The Synergist.org & PFMD.org

Image taken by Jennifer Harris

Panellists from the left: Lidewij (Eva) Vat, Researcher & Lecturer Meaningful and Sustainable Patient Engagement, Athena – Research and Education Institute / Lindsay Weaver, Co-Founder & CEO Realise Advocacy / Carole Scrafton, CEO & Co-Founder Patient Advocacy Organisation, FibroFlutters (my experience) / Lara Bloom, President and CEO The Ehlers Danlos Society / Moderator: Nicholas Brooke, Founder and Executive Director The Synergist.org & PFMD.org

Image taken by Jennifer Harris


3) During my experience on a multi-stakeholder initiative it became clear early on that language barriers are not just restricted to patients not understanding literature. 

Different stakeholders use different terminologies to say the same thing. This does not help anyone co-produce effectively with patients.

  • Using different words, terminologies, and expressions to say the same thing is highly confusing to patients & general Jo(e)s. The scope should be widened to stress the importance of every stakeholder communicating in a more universal manner to enhance mutual understanding due to the diverse cross-functional and cross-industrial representativeness of stakeholders.  

  • Time to develop a ‘universal language’ it could help to reduce confusion & misunderstanding of information by all stakeholders & #notjustpatients.

  • Working together united within the industry we can develop a better way to communicate without confusing each other.

  • It is not just patients that become lost in the translation.

  • Doctors do not use the same words as an academic, clinical, or medical researchers when explaining things. Using patients & stakeholders from clinical, medical & pharma can help to reduce many of the current language barriers that exist.

  • Through teamwork & unity of skillsets you can produce the results that everyone is looking for.

  • Cross-functional working is becoming a normality so being able to understand each other is an important step to develop and nurture.

  • A ‘universal language’ could increase the understanding of what patient engagement, patient-centricity, & patient voice is within patient communities. Increase patient involvement in research and development, boost trial retainment/ recruitment levels.

4) Multi-stakeholder initiatives create a special type of collective intelligence from a cross-section of diverse stakeholders.

  • PE can be embedded into the culture from the onset & carried throughout the whole project.

  • opportunity to develop trust & build long-term relationships that can be used again

  • patient partnerships that you can nurture. = Better patient engagement & easier relationship building

  • Multi-stakeholder approaches = increased patient empowerment / amplify patient voice through better patient engagement practices.

Image of me – PRESENTATION: How-to-guide in implementing patient engagement within the early development / preclinical processes of R&D: Patient Experience.

Discussing the multi-stakeholder approach that was used to create the ‘How-to’ guides.

Just about to begin my presentation, the photo was taken by David Ross.

Key takeaways from the event – My patient experience

There was a general feeling that co-creative collaboration type of approaches are the key to moving forwards. The need for cross-functional working is being realised, and becoming more utilised. You all have the shared purpose to creating something to improve patient engagement practices that uses collective intelligence. Plus, you can ensure that continuity and sustainability, ‘cross-functionally’, across the different stakeholder groups are more achievable with you all following the same page.
Using multi-stakeholder approaches can be really beneficial to all participants.  There is VARIETY of skills and knowledge available. Each stakeholder member of the team is utilised doing what they know best. = Better task division
Multi-stakeholder approaches = increased patient empowerment / amplify patient voice through better patient engagement practices.
Progress at designing patient engagement best practices has been happening with varying options now available to guide industry stakeholders. There are some great frameworks and toolkits out there.
There is no real way to measure patient engagement good practice. No easy way for anyone to really know who is doing it well, and who is just doing a good job of looking like they’re doing it. Idea of industry standard / stamp was well received.
The realisation of including patients from the onset is occurring, but there is still a long way to go before it can be said that it is normal practise. Making the move to see us more as partners is the request from patients and for us to be treated equally. There is value to having patients as partners from the start and at each stage of the process.
Regarding compliancy and regulations, are companies genuinely prevented from progressions with patient engagement because of them, or are they just using them as an excuse?
Communication and language barriers extend beyond Plain Language Summaries and it is not only patients that have problems. The idea of a universal language was well received. Better communication = better understanding and better practices that lead lead to better education, improved engagement and more likely to succeed.
The pandemic happened and brought a few issues to the forefront regarding drug development processes and whether decentralisation is doable? Will the hybrid model be the future of trials for a few years to come?
Digital innovations were happening before the pandemic, but indeed… they have excelled due to necessity as a result of covid.
Mental health support should be included as a patient need.
What is the future after pandemic? The jury is still out!
Acronyms are annoying!
There has been a huge undertaking to tackle Diversity, Equity and Inclusion (DEI) respecting the need to involve people of all races and cultures. This is wonderful news and I fully support any work addressing this. However, whilst I genuinely support DEI > Why aren’t they including disability? I have many chronic illnesses and disabilities and have fought for a long time for inclusion and to become visible, only to become invisible once more.  It is an element of diversity, equity & inclusion based discussion that groups keep ignoring.
I find it a huge step backwards for those of us with disabilities to be left out of the diversity, equity and inclusion discussion. At times depending on what mindset I’m in it can be offensive and disappointing.
Trust remains an issue, but if there was an industry standard then trust will improve. If patients are included from the onset then trust will develop as the relationship develops and can be built to last for the long term.

There were many presentations, panels and discussions across both days and I can’t tell all in this article. So, I have shared what stuck out the most to me – My experience.



Please remember that I am a patient so this is given using my interpretations, my opinions, my experience, and importantly my patient perspective.


Carole Scrafton - patient advocate standing with her rollator mobility aid
Carole Scrafton – patient advocate

My views should be quite well-known by now regarding patient centricity and how industry should be operating due to the nature of the ‘patient landscape’ . 

…for our lives to go on we need ‘all-stakeholders’ so that we can live through the illnesses that we do every day. Whether it’s pharma, clinical, medical, digital, HCPs, diagnostics, research, and so on…

Pharma, in our world is only part of the solution,…so collaboration using multi-stakeholder approaches makes the most common sense!

Finally, a massive thank you to Jocelyn Raguindin the Conference Director and Paradigm Global Events for providing us all with the opportunity to take part. Despite the odd technical hiccup, that are always expected, it was a fabulous two days covering some fabulous content by amazing speakers.


Many thanks for reading my summary, my experience, and for your support



#patientcentricity #patientengagement #collaboration #notjustpatients #industryexperts #multistakeholders #patientexperience #patientperspective #patients #patientadvocates #caregivers #healthcare #clinical #pharmaceutical #medical #drugdevelopment #drugdiscovery #clinicalresearch #clinicaltrials #researchanddevelopment #pharma #healthcareindustry #medicalindustry #biopharma #diseasemanagement #healthsolutions #health #diversityequityinclusion #healthcomms #medcomms #patientneeds #bestpractice #collectiveintelligence #universallanguage


Check out this section of our site

https://fibroflutters.com/2021/09/23/patient-engagement-with-patient-focused-medicine-development/
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FibroFlutters

We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.

To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.

The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.

Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients



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