There’s no ‘Me-Me-Me’ in Advocacy!
It is that time of year again when as Patient Advocates we celebrate the work of each other as peers and in a few cases friends too, the kind who become family. Whilst this post is purposefully designed to highlight why I should be endorsed through sharing some of the things I have been getting up to I also can’t write it without mentioning those who I admire and support. A chance for me to say thank you to them and ask you kindly to also check out their #WEGOHealthAwards profiles and please press endorse.
Please Endorse by clicking our names and following the link there’s only 24 hours left to show us your support
Carole Scrafton / FibroFlutters
Back Pain Blog / Barbara McLullich
Michelle Curtis is a Zebra like me
Melissa Nerdy Talwar / Support Fibromyalgia
Thank you to those patient peers above for being there, and giving support when I’ve needed it.
Thank you to Wego Health for providing patient advocates with this time to celebrate their work and recognise their own self-worth,
Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards
FibroFlutters (FF) is a Patient Advocacy Organisation and Social Media Community Network for chronic & rare illness providing support & advice when requested from people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare diseases & others both at a local level in Sunderland NE UK & across the globe VIA our social media community network.
We are there for everyone #notjustpatients and by this we mean that we include caregivers, healthcare providers, clinical researchers, students, pharmaceutical industry, Medical industry and any stakeholder with an interest, or connection, to the medical and healthcare industries.
Offering friendship, support & advice, locally, in Sunderland, NE UK & across the globe VIA our social media community network. Carole is an Expert Patient for fibromyalgia, musculoskeletal & chronic pain and FF Motto for their Fibromyalgia advocacy is: Let’s help to make ourselves visible
Carole is always campaigning for better healthcare pathways for patients with multiple conditions, and continuously advocating for a Multi-Disciplinary approach to all aspects of medical healthcare industries. Her campaigning and advocacy is aimed at patients; healthcare; pharma; HCPs; medical; academia; clinical; research. Carole pursues this mission through speaking at events, online campaigning & raising awareness across FF Social Media Channels regarding topics such as health literacy; clinical trials; disease awareness; patient engagement; disability rights; public health. Despite many people thinking FibroFlutters is a solo show… Carole does have help from other founding members and a number of supporters, and other Group owners, who each have their own interests and spend time advocating for health, and research, away from social media and within their own health chronic health and rare disease groups.
The social media community network grew accidentally from a communications avenue that Carole created, and developed, to help keep FibroFlutters support groups members connected. It was initiated back in 2014 with Twitter and Pinterest and in 2015 the website and Facebook were advantageous additions. Today it incorporates many platforms and news feeds including Nuzzel, paper.li, feedspot, for sharing news, articles, health and medical communications, latest research and pharma news out to all stakeholders, and not just patients and their caregivers.
Sharing health information out to members that is relevant is a key aspect of educating where we can as an organization. Aside from that, over time health information often changes due to research finding new things, for example new symptoms may be uncovered, or new methods are found, or technologies developed which alter the way, or improve, the way a condition is diagnosed. Getting this updated information out to those who need it can be crucial and not just beneficial. Carole created the #chronicillnessVOICE as a means to share information across the FF community network and as a newspaper / newsletter set up it is a way to feed information and news to the medical and healthcare industry as whole and #notjustpatients. The nuzzel and paperli are very different in format, but both represent the same ethical concepts, and desire to work at a multi-stakeholder capacity.
The #chronicillnessVOICE Daily Paperli
Every effort is in the name of advocacy as a way to create better patient care, patient outcomes, and improve patient engagement so that patients and pharma can begin to collaborate and create better products, better and more trusting, ‘long-term’, relationships and partnerships and in general help to create better healthcare for all. Encouraging a multi-disciplined approach using multi-stakeholders from within the medical and healthcare industries to work together and find solutions. Influencing and connecting others who may be able to co-create and collaborate.
At the same time advocating for better health literacy, the release of research outcomes to those who participate, and helping to educate the urgency of patient inclusion wherever relevant and possible. As a team we work on and offline with other founding members and co. Ian Foulger, Mark Anthony, Elaine Hanson, Sonia Hawkins and Vicky Green.
Carole is also taking part in pharma / research events as patient voice, leader and expert on behalf of FibroFlutters Community.
As well as that Carole is a Core Team Member of two working groups with Patient Focused Medicine Development (PFMD) on two project initiatives that are creating ‘How-to’ guides for implementing patient engagement into the clinical trial process The purpose is to help educate and guide all stakeholders into what each phase of a clinical trial is from ‘Early stage and preclinical’ through to the end phase of the trial. Carole is participating, and collaborating, in the Preclinical group and the education and training group, both of which are multi-stakeholder teams from across the globe with different backgrounds and expertise within the world of research, medical and pharma. Together we collaborate as we develop the guides. The hope is to increase patient trial recruitment and retention through improving the patient engagement processes.
On June 26th Carole co-presented at the PEOF2020 on behalf of working group one.
Session A: How to engage patients in the early stages? (workshop) and the resources can be found on the link provided above! This was Carole’s first proper presenting role so it was a little nerve-wracking and to be honest Carole wasn’t feeling positive about giving a good performance as a result. It took a lot of valuable support from her co-presenters and PFMD team members to get her through it. Although it was quite scary she did it, and now it means any following presenting roles should be a little easier for her now that she has broken the ice.
This work is important to Carole as being a part of the rare disease landscape improving patient retention and recruitment is the only way to improve the success and feasibility of drug development. The other aspect of importance is her persistence at pursuing that all-stakeholder approach to patient centricity and patient engagement as a tool to make the clinical trial process more effective through ensuring trust is gained right from the start of a trial in the early developmental and preclinical phases. She is always encouraging patients to take part in trials and help them to understand why they are important.
It has been, and still is, an honour for me to be a member of the Core Team for both groups that I am involved with.
Reflecting back! A snippet of my advocacy efforts in 2020 so far.
My co-presenting team on 26th June #PEOF2020
- Nick Hicks supports advocacy leaders within life science companies to build & implement their patient engagement strategy and is Principal Consultant
Company Name: Commutateur advocacy communications in Paris - Dr Oleksandr Gorbenko
Global Patient Centricity Director at Ipsen based in UK - Oana BERNARD
Directeur Medico-Scientifique -R&D | Servier in Paris - Merlin Williams
Senior Consultant at Executive Insight, Healthcare Consultants
Greater Zurich Area - Chi (Nguyen) Pakarinen
Program Manager at The Synergist/ Patient Focused Medicines Development (PFMD) and Co-lead at PARADIGM (IMI initiative)
Brussels Area, Belgium - Carina Prelucan – tech and event support.
Program Coordinator at The Synergist.org
Belgium
Of course there were many other people involved that did not present on the day including:
Natasha Ratcliffe who has played a major role in the development of this module, but due to being furloughed as a result of covid-19 was unable to present.
Research Involvement Manager at Parkinson’s UK & based in London
David Feldman key contributor
Medical Project Director National Kidney Foundation
Greater New York City Area
You can watch the PFMD session at PEOF 2020 – ‘How to engage patients in the early stages’ presented on 26th June 2020 via this link:
The glory of technology… we couldn’t unmute ourselves!
Please check out this link to learn more about PFMD and their initiatives on Synapse platform
https://synapse.pfmd.org/organizations/pfmd
And my profile on Synapse where you can read about the initiatives that I am involved with
https://synapse.pfmd.org/experts/O6wWb7Kd
FibroFlutters on Synapse where you can read about the initiatives that we are involved with
https://synapse.pfmd.org/organizations/fibroflutters
Patient Focused Medicines Development website:
With a keen interest in corporate responsibility, and governance, Carole has also been working with Envision Pharma on a project about how much pharmaceutical companies are in fact there for patients and whether it is all just talk. She was approached in November 2019 by Envision with this opportunity to collaborate on this research project, which began in January 2020.
Researchers and Authors:
Professor Karen Woolley
Global Lead, Patient Partnerships, Envision Pharma Group
Australia
Carole Scrafton FibroFlutters
CEO & Co-Founder Patient Advocacy Organisation & Online community support network at FibroFlutters
Sunderland, England, United Kingdom
Amanda Boughey
Global Patient Partnership Director at Envision Pharma Group
Antrobus, Cheshire, United Kingdom
Lauri Arnstein
Patient Partnership Scientific Liaison at Envision Pharma Group
London, Greater London, United Kingdom
A project that delved into whether a top-down approach had been used and if ‘yes’ whether there had been an increase in ‘true’ patient engagement between 2008 and 2018. This was carried out by looking at the annual CEO reports from the top 10 noted pharmaceutical companies in accordance with ‘Patient Review’ reports. The research involved looking at how patients were referred to within the text of those annual reports to see if the companies were doing things with, or for, patients and highlighting how the use of words can matter.
It is important to point out that Carole was involved from the start & all the way through (ie, co-designed, conducted, & reported) this exciting & novel research project, which was taken as a poster abstract and presented at DIA virtual conference in June 2020. Apart from gaining prestige from being involved in such novel research Carole is now a Patient Author, and also a contracted Freelance Patient Researcher with Envision Pharma for the next five years. This research is hopefully going to advance further so it is a ‘watch this space’ kind of project!
This research was presented as a poster abstract at the DIA Annual conference in June 2020 and can be seen by visiting this link on Figshare where you will also find our DOI: https://figshare.com/articles/What_pharmaceutical_company_leaders_say_and_what_patient_leaders_think/12570365
Words CAN matter. This research indicates that pharmaceutical company leaders (eg, Board Chairs and CEOs) could help drive a patient-focused culture by enhancing the frequency and context of their use of the word ‘patient’ in their Annual Reports.
https://figshare.com/articles/What_pharmaceutical_company_leaders_say_and_what_patient_leaders_think/12570365
This is our poster below, but to view it correctly as the presentation please click the poster, or the other links provided to get access to the full presentation and virtual poster with embedded audio voices of Carole giving the ‘Patient Perspective’, and Karen giving the ‘Medical Communications’ perspectives.
What pharmaceutical company leaders say and what patient leaders think
Poster posted on 26.06.2020, 08:20 by Karen Woolley
Authors: Karen L. Woolley, a; Carole Scrafton, b; Amanda Boughey, c Lauri Arnstein, c
In March 2020 Carole was asked by Rita Prota from ‘The Future of Healthcare’ if she would mind taking part in an interview about FibroFlutters and herself, and her opinions about what lies ahead for the future of healthcare taking into account the emergence of digital health technologies and the rapidly changing pharma landscape. Asked to express her thoughts about how patients are impacted by Corona, patient empowerment and Pharma companies communication to patients. Please note that this was just as the coronavirus global pandemic began to spread!
Patients’ corner: Carole Scrafton and FibroFlutters, patients advocacy organisation
Free Inspiration by The Future of Healthcare May 13, 2020
The interview questions:
1. Can you tell me more about FibroFlutters?
2. What do you offer to patients? Can you give me an example?
3. What do you think about the current situation? What will be the impacts for patients?
4. Do you think pharma companies give enough importance to patient empowerment? Do you think it improved these lasts years?
5. What could pharma improve in their communication to patients?
Read Carole’s responses to the interview questions here:
Find out about the organisation The Future of Healthcare by visiting their website: https://thefutureofhealth.care/
Carole was quoted in this following article which discusses the different ways to amplify the patient voice when looking to achieve patient centricity within Medical Affairs and Life Sciences. Increasing patient recruitment and retainment for clinical trials is something that many Clinical Research Organisations, and Pharmaceutical companies are desperate to improve and also something as a research advocate Carole has been voicing and advocating for on behalf of patients and research / pharma for a few years now. Read what they wrote about my thoughts on this subject by following the article link below
How Medical Affairs Can Amplify the Patient Voice
MAY 26 2020 | ANJU Life Sciences software
How can pharma engage with patients better to improve the drug development process? The article provides a great insight!
https://www.anjusoftware.com/about/all-news/patient-voice
Understanding patients’ needs as well as the lived reality of treatments would help pharma make more patient-centric decisions during drug development.
https://www.anjusoftware.com/about/all-news/patient-voice
Webinars and events are a great way to keep up to date with what is happening in the medical healthcare industry and with the industry now having so many sub-elements to it there are plenty to choose from.
Carole and a few of FF Team members attend a wide variety of webinars from pharmaceutical companies, digital health companies, research institutions, charities and health organisations and the same applies to the events that they register for too. Webinars and events give them the opportunity to ask questions or voice an opinion as advocates, raise the voices of those who cannot do it themselves. So, they register for as many as they can that are both relevant, and advantageous, to the aims and missions of themselves, their followers, members, supporters and FibroFlutters.
Carole does not just attend webinars and events, but also participates as a speaker sometimes just like she did for an educational webinar series by mdgroup International. You can read the recap via the mdgroup blog and watch the webinar via this link below:
Carole was actively raising awareness by taking part in the #AtHomeSuperheroes #FindYourPower a SuperHero Series challenge by Marvel by walking 10 km using her walker and Carole strut her stripes across three days to also raise some funds to update our website. She even used a little more gusto and walked a total of 12.5 Km.
Why? To raise awareness of Fibromyalgia, Arthritis, Chronic Pain, Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorders. Handing out literature and talking to people about these health conditions and other chronic or rare diseases. Also to raise awareness of FibroFlutters Patient Advocacy Organisation & Online Community Support Network to let people know that we exist for our local communities.
Weʼre raising £250 to help fund the re-development of our website & new app to provide a better experience for our chronically ill & rare disease users.
Poster awareness campaigns
Rare Disease Awareness Day Article
Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share? An initiative through Cambridge Rare Disease Network – Jo Balfour
Another way that Carole extended her advocacy was to join The British Society of Rheumatology as a patient member which gives her exclusive access to their webinars and the membership helps her to have access as a patient to other institutional event such as ‘The Royal Society of Medicine‘ webinars and the ‘EULAR‘ events too
Carole is also a mentee on the Findacure Mentoring scheme for 2020/21 as she transitions FibroFlutters into an official organisation for chronic and rare diseases. This is a necessary move in order to gain membership to a variety of Rare Disease organisations and be taken seriously, gain access to their events and much more.
Future speaking engagements
Carole is actively involved as a patient advocate since 2018 with eyeforpharma now known as Reuters Events Pharma and part of Reuters Events. This year is of no exception and isn’t just taking part and speaking on a panel discussion at their Pharma-Patient Summit, but she also aided the design of the event as a patient advisor, other patients and stakeholders have also been involved working with Cameron Kunyeda who has been developing the event.
Carole is taking part on – Panel: How to reach and educate a wider range of patients with an agile social media strategy.
Pharma & Patient Europe 2020
15 – 16 September, 2020 · Digital Conference & Expo
Carole has been invited, she accepted, to attend as a Panelist at the NEXUS “Clinical Trials Nexus Europe 2020” that will be taking place on 26th & 27th of November in Paris, France
Massive thank you from Carole
To Paul Simms for always having my back, supporting me and FibroFlutters and for being a fabulous friend too.
Also, the team at PFMD / Synergist including Nicholas Brooke, Chi Pakarinen, Anne-Marie Hamoir, Daniela Luzuriaga Ubilla, and Carina Prelucan, Bonaventure Ikediashi, #madewithpatients and a huge team of different stakeholders.
The Girls at Envision Professor Karen Woolley, Amanda Boughey, Lauri Arnstein
Rita Prota from The Future of Health.care
Diana Perry for being my Mentor for the Findacure Mentoring scheme for 2020/21
Andy Gurd and Valeria C. Nicoli-Carr of mdgroup recent new connections to our network.
Daniel Snape and the team at Convenzis Group who I run a Social Media Campaign supporting their educational events for the NHS – https://fibroflutters.com/2020/06/13/take-a-look-at-what-nhs-events-convenzis-have-coming-up/
Cameron Kunyeda, Liz Swift, Josh Bramwell, Izzy Gladstone & Matthew Atkinson and the team at Reuters Events Pharma – formerly eyeforpharma
#patientengagement #patientcentricity #patientadvocacy #patients #health #research #clinical #medical #pharma #digital
Massive thank you to friends, family and all FiboFlutter followers for their continued support and for those who have contributed to our fundraiser. Including Michael Scrafton for being my good friend, caregiver and supporting coach, during my #AtHomeSuperheroes challenge. Also for being Artistic Director at FibroFlutters since 2015 and for decorating my walker / rollator for the challenge.
Carole and FF support varying charities & health related organisations incl. Sunderland Mind; Fibromyalgia Action UK; EDS UK; Versus Arthritis; ARMA & others, NIHR, NHS, not all financially!
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