The Spark Global

Ipsos UK and the Patient Information Forum (PIF) are creating a public-facing documentary on the topic of health misinformation. The documentary will include both the audio/video footage of lived experiences of adults in the UK, and of interviews with academics, scholars and other practitioners working within this area. Participating in this research is completely voluntary. If you do take part, and if you give your explicit consent, audio and video recordings, and photographs of you participating may take place. These photos and/or edited versions of the recordings may be used in presentation of the research findings to Ipsos staff and/or to PIF staff and stakeholders. They may also be used in any presentations of the research findings, which may include publication in journals, on public websites, including social media sites, as well as use in conference presentations. Your name or a pseudonym may also be used in a caption with any photos, audio and film footage. Please be assured that any research footage and photographs will be held by Ipsos UK and PIF solely for the above research. They will offer you the possibility to see the edited video footage of you before it is published publicly. It will be your decision whether you want to review the video or not. If you have experienced health-related misinformation and would like to find out more about participating in this project, please contact Sophie Randall from the Patient Information Forum: sophie.randall@pifonline.org.uk

Great to see this published in Asian Leader newspaper! It's so important that we continue to raise awareness about MS within the South Asian community. Thanks Kaz Laljee for facilitating this and Samantha Banks for helping to put the article together! Asian MS

If you missed the "Sharing your experiences in the media" webinar that I co-hosted earlier in the week with “The Carers Advocate” Simone Bell then it's now available to watch back! It was so great for Asian MS to team up with other organisations on this one! Talks With M.S. The Nerve Of My Multiple Sclerosis CIC MS Society Samantha Banks Olivia Massie Terri-Louise Brown Natalie Diana Busari https://lnkd.in/e8EWPSdM

A great overview of the opportunities and challenges of patient engagement in Africa, via the ISPEP hub from Sarah K. https://lnkd.in/euENGdXt

Ten years ago today, we danced in front of the nation! I can't believe a whole decade has gone by since this aired on BBC1!? Looking back, I'm reminded of just how overwhelmed I was by the love and support shown by everyone. These are just a few of my favourite photos (there's actually loads!) They've brought a huge smile to my face looking back through them! And for those of you who fancy watching some dancing again: Trishna & Aljaz jive: https://lnkd.in/e8yh7aXt People's Strictly group dance: https://lnkd.in/eHhDsT3X

"Reviews of the health of women from ethnic minority groups are sparse and often do not cover the range of health inequalities they face across the life course. This long read starts to fill that gap. It describes the barriers that women from ethnic minority groups experience in preventing ill health, accessing services, safeguarding reproductive and maternal health, managing long-term conditions and ageing well."

Taylor & Francis Group is publishing #PlainLanguageSummaries of Publications (PLSPs). A PLSP is a standalone article that communicates the significance of scientific research in jargon-free language and engaging graphics, making key findings accessible to wide audiences, including healthcare professionals and patients. The move by publishers to incorporate PLSPs into their raft of article types is crucial for ensuring the continued democratisation of scientific information, making it much more accessible to non-scientific audiences. It's why I'm such an advocate for their development and use! You can read one of T&F’s latest PLSP publications by clicking on the image. #PLSP #MedComms #MedPubs #PlainLanguage #Healthcare #Patients #ClinicalResearch  https://lnkd.in/eWFT5GP4

"Patient and public involvement (PPI) in clinical research is well established in the UK, but further improvements are still needed. Earlier this year, the Working in Partnership with Patients and Communities Forum surveyed the FPM membership to find out more about their experiences of PPI. This blog provides a brief overview and interpretation of the survey results."

Yesterday I had the pleasure of presenting in an extended #OpenPharma meeting, all about Patients in Publications. It was a brilliant discussion that started with quick-fire presentations from various stakeholders, including patient advocates (me!), pharma, publishers and PFMD .org , followed by a Q&A with attendees. It was a great opportunity to share best practice, case studies and examples of initiatives, tools & resources, as well as discuss some of the hot topics of the day like patient authorship, compensation, congress challenges and more. Thanks for asking me Sophie Nobes / Joana Osório !And thanks for a great discussion fellow panelists: Catherine Skobe , Louise Roch , Sarah Griffiths , Sophia Walker , Hayley Chapman ! If you'd like to find out more about Open Pharma then go to: https://lnkd.in/ezaHRFtt

If you weren't able to join us live this week for the ISMPP (International Society for Medical Publication Professionals) U webinar entitled "Can health literacy best practices in publications fuel innovation in patient-friendly electronic package information (ePI)?" you'll be pleased to know that it's now available on the ISMPP website. Free to access for members! Great discussion with my fellow panelists Catherine Skobe , Christopher Rains and Behtash Bahador, MS (he/him/his) and well facilitated by the wonderful Chris Winchester. Shout out to Shimon Yoshida, as well as the team at Oxford PharmaGenesis, especially Joanna Louise Donnelly, PhD. for your support with content and the ISMPP team, especially Kevin Lewis for getting us up and running! https://lnkd.in/eZYPCBkh