Patient Engagement Day! Did you miss it?
The webinar and patient video links from Patient Engagement Day can be accessed in this post. Including our CEO of FibroFlutters Carole who was really honoured to be asked to participate. This post has been updated on 30th September to include an article by Olivia Kersey, Patient Strategist, at PEP Talks. The article outlines the highlights of the very first annual Patient Engagement Day.
Putting patients at the heart of the drug development process to deliver value and improve outcomes
On the day…
On the day there was a webinar discussion with Shona Davies and Laura McKeaveney. It was hosted by Emma Sutcliffe Senior Vice President, Patient Insights and Solutions at Prime Global. Together they discussed what it really takes to amplify the patient voice in healthcare.
Shona Davies is a Mind Advocate, and she campaigns in the mental health space. Shona also consults and coaches both individuals, and organisations, to ensure everyone that needs support, gets it.
Laura McKeaveney is Chair at Tiny Life – The Premature Baby Charity for Northern Ireland. The charity offers practical and emotional support to parents of premature and sick babies in Northern Ireland
Did you miss it? Follow the link below and you can watch the webinar on YouTube
View the on-demand recording of the Patient Engagement Day webinar on ‘Amplifying the Patient Voice in Healthcare’:
Carole was involved as a patient partner in the recent brand new event ‘Patient Engagement Day’ by Prime Global. It was held on 1st September 2021. The theme for this year was #AmplifyThePatientVoice.
Other patient partners that took part were Trishna Bharadia an expert patient for Multiple Sclerosis, and Lynn Wilks who is an expert patient for Alopecia. Carole is an expert patient for MSK related conditions such as the rare disease Ehlers-Danlos syndrome, and Fibromyalgia.
Patient Partner Interview with Carole, Ehlers-Danlos Syndrome
Patient Partner Interview with Trishna, Multiple Sclerosis
Patient Partner Interview with Lynn, Alopecia
Patient Engagement with Prime Patient
Check out this page on our site for patient engagement toolkits >
Flutters and Strutters
FibroFlutters and ZebraStrutters
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
The UK’s First Network of Connected Community Maps by It’s A Doddle
Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and Wales. Reg. No. 14065901