Page 8
Other advocacy efforts throughout 2019
NEWLY ADDED Patient advisor to FindMeCure Foundation
Throughout 2019 I was advising Daniela Shikova at FindMeCure in a patient capacity as the Foundation researched and developed their new ‘FindMePatients’ platform. It was an honour to be asked and also to help along with many other patient representatives that live with chronic and rare diseases.
“The treatments that are already available are not your only option. Inform yourself about clinical trials happening worldwide right now. We are here to provide you free access to future treatments.”
https://www.findmecure.com/
FindMeCure is a platform to help patients find clinical trials and they did design me quite a specific widget for this website, however I have been unable to get it working as yet. Our widget will enable a person to look for any health condition and not just for health condition and I am determined to reconnect with FindMeCure to iron out the coding so that we get it launched.
“We Help You Plan
Successful Clinical TrialsThe best clinical trial strategies need the most reliable and essential data.”
FindMePatients is a platform aiming to bring clinical trials closer to patients and to also to enable CRO’s from within pharma research sector plan their clinical trials. Personally speaking after following the development and work of this I believe the two platforms will work in tandem to complement each other. Maya Zlatanova, who is the CEO of both platforms, gave a fantastic presentation at the Patient Engagement Open Forum explaining all about what the purpose of this platform is and you can check that out via the link provided on the September Section.
Inform yourself about #clinicaltrials happening worldwide right now. We are here to provide you #freeaccess to #futuretreatments. #patients #drugdevelopment #clinicalresearch @FindMeCure
Tweet
Social Media Sponsorship roles
RCGP’s 7th Health and Justice Summit: Journeys Through Justice – Leadership and Transformation (sponsored)
UPDATED SECTION
Throughout 2019 I was a Social media sponsor for Covenzis National Conference Experts | Conferences UK for the event listed below where I shared and promoted the event across FibroFlutters social media network. I was offered a ticket to the event but sadly could not make it so will hopefully be attending a different event at some point this year.
RCGP’s 7th Health and Justice Summit: Journeys Through Justice – Leadership and Transformation |November 25-26, 2019
Supporting public health issues that can affect any one of us is a natural response by anybody. For me everyone has the right to healthcare and this summit tackled some key issues facing the UK at the moment with respect to public health issues. Such as women in prison, children, and even transgendered people. Issues that need a lot of support and I’m happy to to give them that.
Many thanks to Daniel Snape, Director at ‘Convenzis Group Limited, for giving me this opportunity and I’m looking forward to aiding them in future campaigns. Also like to mention Sean McLaughlin who is a Director and Head of Partnerships & Programme Development at Convenzis Group Limited.
Convenzis Group Limited is a family ran business that provide politically accurate conferences to advise senior managers on current changes in policy, visit the website via the link below
Link to my sponsored post: NOT LONG NOW! RCGP’s 7th Health and Justice Summit: Journeys Through Justice – Leadership and Transformation (sponsored)(updated)
Social media sponsor for AIMed
Throughout 2019 I was also a social media sponsor for ‘AIMed‘ where I shared and promoted the following 2 events across FibroFlutters social media network and was offered tickets to the AIMed Europe event. However, this event clashed with my Brussels event so sadly didn’t get to attend. There is scope for me to attend a different one though!
AIMed Cardiology / Radiology 17-19 June CHICAGO AREA
AIMed Europe London, September 2019
These events are designed for clinicians and health professionals, which is one of the reasons I wished to get involved and support AIMed. Other reasons include the fact that it gave me the opportunity to learn a bit about AI in medicine myself through attending their webinars and breakfast meetings via live streams, even their conferences.
Radiology is something that people with chronic and rare illnesses rely on quite a bit especially in terms of diagnostics, and future precision / personalised medicines. To learn how the technology is advancing was important to me so that I could share this information with fellow patients and peers.
“The AIMed portfolio is instrumental in reshaping the mindsets of individuals and the future of medicine.
https://ai-med.io/
Join us as we lead the revolution to discuss, educate, innovate and change.”
WEGO Health
WEGO Health Award judge for selecting finalists for final judging.
WEGO Health Award nominee for two awards, Patient Hero & Healthcare Collaborator – Patient
Closing thoughts
When I started to write this journey of advocacy for 2019 back in October I didn’t realise quite how much that I had done. It has taken me a few months to complete, but in fairness a lot of other things happened during that time like seven weeks of really poor health, other writing commitments and life in general including 2 weeks of festive holidays.
In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. I was involved with many types of advocacy work from speaking on panels, moderating roundtables, online campaigning, sharing news cross-functionally and cross-industrially, having my story told in a magazine, and physically taking part in projects with people from varying sectors of the medical healthcare industries, including pharma, health professionals and other patients.
My advocacy also spanned varying areas of the industry, pharma, AI, public health, clinical and medical research, PPI and rare disease. Of course mustn’t forget the support and advice side of FibroFlutters either, which also plays a big role in our work as advocates when we are supporting charities and organisations through sharing their health information, and advice about where to get advice! Funny thing is that I know there are things missing too, if I remember them I’ll try to remember to add them in.
At this point I wish to thank all the organisations, companies and people who I have shared this journey with during 2019. You all helped to make it special, and to me, very memorable. Thank you.
Casting my mind back once more to the beginning of 2019 when I chose to try and achieve advocacy at a ‘multi-stakeholder level’ I now sit back and ask whether, or not, I was successful. A huge part of me would like to think that I have been.
However, you guys, my readers will be far better judges and so I leave it up to you to decide whether I was, or not!
Finally, many thanks for taking the time out to read this I know it is no small read, but given the amount of things I got up to last year I’m not surprised. Take care everyone and wishing you all wellness, as always.
Carole
[…] Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton […]