Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

Health and research advocacy were always huge parts of our Mission Statement and now it has grown to include patient, and also pharma advocacy including digital health and AI.

Updated 28 / 01 / 2020

NEWLY ADDED Chronic Pain Support Groups Research, BY Emily Snushall, BSc Psychology

NEWLY ADDED Summary of findings – Chronic Pain Support Groups Research BY Emily Snushall, BSc Psychology

NEWLY ADDED Link to the Patient Summit Roundtable Summary now included

NEWLY ADDED Patient advisor to FindMeCure Foundation

PLUS A few updated sections


  • Page 1
    • Contents
    • Introduction
  • Page 2
    • January
      • Havas Lynx Pride event
      • Impatient Conference – Steering Committee
      • UPDATED Patient-Centricity: An Appraisal | Ross Davies | eyeforpharma | 30 January 2019
    • February
      • UPDATED Sunderland Fibromyalgia Support Groups 25th birthday
      • Fibromyalgia support Tyne and Wear Group’s afternoon Tea-Party
      • Rare Disease Awareness Day
      • NEWLY ADDED Chronic Pain Support Groups Research, BY Emily Snushall, BSc Psychology
  • Page 3
    • March
      • Im-patient conference | Co-chair and roundtable moderator
      • 17th Annual eyeforpharma Barcelona Conference | Panel speaker
      • Personal health advocacy – The burdens of pain management, inflammation and sensitivity to anti-inflammatories. | Carole Scrafton | 27 March 2019
      • Bollywood night at Delhi 6 in South Shields with Tyne & Wear fibro friends night out
  • Page 4
    • April
      • Event – ‘Fatigue: My life, your research’ NIHR CRN NE & Cumbria
    • May
      • Disease awareness
      • Stretch, 1, 2, 3, 4… Bend 1, 2, 3, 4 … | ActivePosture shirt – Product review | Carole Scrafton (sponsored post)
      • IMI pool of expert patients application
  • Page 5
    • June
      • NEWLY ADDED Summary of findings – Chronic Pain Support Groups Research BY Emily Snushall, BSc Psychology
      • Catalyst event – Making sense of Pain 26th June 2019
    • July
      • Patient Focused Medicine Development WG1 Workshop in Brentford
    • August
      • Acceptance onto the IMI2 JU pool of expert patients
  • Page 6
    • September
      • Patient Engagement Open Forum 2019
      • Rare Summit 2019 Patients as Partners / Cambridge Rare Disease Network
      • FibroFlutters Social Media health advocacy and all stakeholder approach to healthcare, across the globe – Peeking at the statistics!
  • Page 7
    • October
      • eyeforpharma Patient Summit Europe | 15-16 October, 2019 | Roundtable Moderator
      • NEWLY ADDED Link to the Patient Summit Roundtable Summary now included
    • November
      • Pharmafocus article giving me the opportunity to tell my journey of life with several rare diseases
      • eyeforpharma Patient Summit Europe | Roundtable Summaries
      • Invitation to become a patient partner on a research project
  • Page 8
    • Other advocacy efforts throughout 2019
      • NEWLY ADDED Patient advisor to FindMeCure Foundation
      • UPDATED SECTION Social Media Sponsorship roles – Convenzis | RCGP’s 7th Health and Justice Summit: Journeys Through Justice – Leadership and Transformation
    • Closing thoughts
  • Page 9
    • FibroFlutters Privacy Policy, disclosures and social links


Living life in the balance as a patient advocate with rare disease and multiple chronic health conditions is frequently a challenging task and is often mis-perceived by onlookers.

In 2019 I upped my game in the World of advocacy to extend my voice outside the laptop and the world wide web to attend varying types of events in connection to patient engagement, healthcare, pharma and research around the UK and even in Europe.  It hasn’t been easy, there have been many painful days and experiences, lots of fatigue in between events and a bit of criticism too… Oh! There’s always a bit of criticism to deal with!!

My year did also involve work within the World Wide Web in the form of Social Media Marketing, Media Sponsorship’s, and Awareness Campaigns, so not all of my missions were held outside the laptop. In fact a few campaigns were carried out via e-mail conversations and online video conferencing too.

Not seeing myself as a ‘patient’ meant that I’d been missing a whole sector of the healthcare industry regarding ‘Health-Comms‘ as a result of everyone using different jargon’s, and languages, and not noticing that they were all talking about the same things. Seeing myself as a patient is horrid, something that I wish I didn’t have to wear the label for; however, it is how the medical healthcare industry refers to us, rather than people.

Thankfully this message has also been filtering through and we are now being viewed as #notjustpatients, a great example of this are Ruth Wilson and Carla van de Gucht and their ‘Person before Patient’ campaign which is taking people on journey’s to better health through story telling. Seeing patients as people first is in fact a huge necessary change in order to gain the trust of people with ‘multiple chronic illnesses’ because we spend our whole lives as patients and don’t often get the opportunity to be just ourselves as people.

This is not to say that I don’t champion the ideal of patientcentricity as a terminology anymore because I do. At the end of the day it doesn’t matter what you call it because the essence is the same for all and that is to design projects, marketing, research and trials etc around the patient, person, human, or customer. Ideally, ‘patient’ is the correct term in the context of what I do and advocate for because it is the improvement of patient outcomes that everyone is basically striving for.

Sharing information has always been a huge part of our ‘Mission Statement / AIMS’ as well.

Since the eyeforpharma Barcelona conference in 2018, and the epiphany which showed me how the work that I had been doing was indeed making an impact without me knowing it, we now have a proper sense of purpose. Now I share a varied selection of news from across the whole medical healthcare industries and out to all stakeholders #notjustpatients via my daily and Nuzzel #chronicillnessVOICE health, medical and pharma related newsletters.

Naturally, this is my way of practising what I preach!

Training and education have also been a huge part of our Mission Statement, so I am pleased that during this last year the message has been filtering through, especially pharma.

It’s no secret that I have spoken quite candidly about the pharma industry needing to pay attention to training and education.

However, in my opinion ‘Pharma’ aren’t the only sector of the medical healthcare industries that requires to address it, something I have been advocating strongly for and a message that I firmly took with me to Barcelona in March, Brussels and Cambridge in September and then London in October when I attended events as an advocate.

Again, in my opinion I strongly feel that using ‘multi-stakeholder’ approaches, collaborative processes and co-creation would all be preferable choices regarding training and education, producing literature that can be understood by all stakeholders is just one example to consider. These approaches can also be applied to many other issues that the medical industries are currently facing. I say this because of the ideals pertaining patient-centricity, patient engagement and how to achieve these things as well as all the other patient centred approaches that pharma companies, medical organisations, research institutes and even including charities and non-profits, are taking.

Taking part in eyeforpharma events again was an honour and I experienced new roles yet again such as being a steering committee member for the Im-patient conference, a pharma event designed and led by patients. The eyeforpharma team and their Chairman Paul Simms were as welcoming as ever at their events in Barcelona and London. Always a pleasure to be an advocate on their behalf as well as myself.

It was an honour to announce that I’d just been made a partner by PFMD (Patient Focused Medicine Development) / The Synergist, on a couple of Working Groups and initiatives as an expert patient and patient organisation. Working with Anne-Marie Hamoir, Chi (Nguyen) Pakarinen, Nicholas Brooke and a few other lovely people.

Projects that involve the consideration of Training and education, patient engagement and with patient involvement throughout their ‘Made with Patients‘ projects. Such projects that are working on #patientinvolvement, #patientengagement (PE) tool kits, ‘how-to’ modules and a repository for where to find PE information around the global industry and who it is aimed at. How to to apply patient engagement to the clinical trial process to enhance the progression of research, improve trial retention, and to educate both patients, and professionals, about clinical trial processes and patient engagement.

Check out their Book of Good Practices

Download their Patient Engagement Quality Guidance

All things you can read about in this end of year report.

“PFMD aims to establish, at global level, a systematic and consistent approach to patient involvement – a worldwide accepted standard for how and when the patient engagement should take place.”

An exciting time with new roles and challenges for me that saw me working with some very fine individuals, other patients, professionals, and other organisations from across varying stakeholders within the world of medical healthcare, clinical research, pharma and patient organisations. Working in alliance and helping to ensure that literature and medical explanations are patient / lay person friendly is something that I will treasure for all time, an opportunity to make a difference at something I campaign for. I’ve been assisting others to create a ‘world’ that patients crave all over the globe, one that they and professionals alike can understand, whilst helping to create standards for ‘patient engagement’ that can be universally followed by all stakeholders…. well contributing to!

Being actively involved in research based activities with NIHR, advocating for clinical research through my involvement with PFMD were crucial to encouraging others to get involved.

Attending the Rare Summit, hosted by Jo Balfour and Cambridge Rare Disease Network and getting us amongst the rare communities and advocates, again an important experience for myself as someone with several rare diseases, and FibroFlutters co-founder having an ultra-rare disease. An event that I hope to attend again in 2020.

What fantastic opportunities and definitely many highlights of my year!!

Extremely grateful to all the organisations and companies, people and advocates that helped my 2019 happen.

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