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MedComms Networking is a not-for-profit initiative building on the work of Peter Llewellyn which seeks to unite individuals and organisations involved in delivering health information. We will do this by listening and by delivering a weekly newsletter and regular online and in-person events. Our group welcomes writers, scientists, editors, educators, project managers, filmmakers, medical journalists, healthcare professionals, researchers, academics, and patient advocates from around the world to join us. The aim is to inform, educate and advance our profession and, ultimately, support patient care. Please sign up to receive our Newsletter and information about future events.
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MedComms Networking is supported by:
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AFTERNOON WORKSHOP - 10 DECEMBER 2019 - LONDON
Involving patients in research and medical writing
Following last year's successful end-of-year meeting, once again we welcomed a lively audience to tackle an important, ongoing topic for the MedComms community. It was also an opportunity to relax with peers, to celebrate the year that is ending and to look forward to the year to come. The event was free to attend thanks to the generosity of the sponsors, Stgilesmedical.
Scroll down for presentation slides, pictures and a summary report, prepared by Michael Achiampong.
Date: 10 December 2019
Venue: Stgilesmedical, Vestry House, 60 St Giles High Street London WC2H 8LG
Timing:
13:00-14:00: Warm lunch (supplied by Franx Restaurant)
14:00-14:10: Introduction and welcome
14:10-14:30 How patients and the public are being involved in co-producing the journal content
14:30-14:50 How can pharmaceutical companies work with patients for patients?
[DOWNLOAD SIMON'S PRESENTATION - PDF]
14:50-15:10 The agency perspective - Patient authorship and plain language summaries
[DOWNLOAD PHIL'S PRESENTATION - PDF]
15:10-15:30 Being part of the team: research and art from the patient's perspective
15:30-15:50 All I want for Christmas... How to write healthcare information for adults and children that 'minds the gap'
15:50-16:10 Writing and testing lay-friendly health information
[DOWNLOAD LAURA'S PRESENTATION - PDF]
16:10-16:30 Question and Answer session
Summary and Keynote:
16:30-17:00 The Patient Involvement Christmas Stocking - Some presents unwrapped
[DOWNLOAD RICHARD'S PRESENTATION - PDF]
Networking
17:00-18:30: Homemade mince pies, bubbly and music from emerging singer/song writing talent Neev-Downes
Some personal, aide-memoire notes, jotted down and shared by Michael Achiampong, BSc (Hons) Pharmacy, MSc, MRPharmS. Locum pharmacist and aspiring medical editor.
1st presenter = Dr Tessa Richards, Senior Editor www.bmj.com
The BMJ readership are "jobbing doctors" and some of her key messages included:-
* The BMJ issue of 18th September 1999 featured an article by Goodacre and Lockwood: "Involving patients in clinical research improves the quality of research" BMJ 1999; 319:724 https://doi.org/10.1136/bmj.319.7212.724
Delegates were encouraged to join the discussion and debate @BMJPatientEd
A passing reference was made to "Rethinking medicine" at the Mayo Clinic, Rochester, MN, USA. [A similar initiative is "Realistic medicine" in Scotland].
2nd presenter = Simon Page. Global medical publications and communications manager, Ipsen Bioinnovations www.ipsen.com/uk [oncology + neurosciences + rare diseases]
* Simon's opening remarks were that we all have a vested interest as patients and parents/ carers that pharma engages with patients as people.
In response to Steven Walker's question: Simon estimated journal costs =GBP000s per article.
Peter's question: comparing Ipsen versus Shire's different OA policies? Simon reiterated Ipsen's commitment to making all affiliated research OA. Potentially, negotiation required when an Independent Researcher approaches Ipsen for research grants.
Delegate John asked a question about the publication of negative clinical trial data [as championed by Dr Ben Goldacre of EBM Datalab and author of Bad Pharma [2012] and Bad Science [2009]. Ipsen have found that pharma/SME start-ups are better than academia/IPOs in reporting negative trial data. Simon suggested that there might be a "sweet spot/middle ground" where OA survives and thrives aka "Coalition S" [Research Information, S/S19]
An interesting BMJ feature is: "unpublished clinical trial of the week".
3rd presenter = Phil Matthews. Portfolio director and team lead, Envision Pharma Group.
Title: "The agency view: patient authorship and plain language summaries [PLS]".
* Explanation of patient authorship w.r.t. Friedreich's ataxia patients and their parents
4th presenter = Tony Pickering. Patient and carer and medical artist. St. Gilesmedical Ltd and Pick Art.
Perhaps the most heartfelt presentation of the afternoon. On being diagnosed with type one diabetes mellitus [T1DM]. Tony's creative and imaginative use of graphic novels and comics to describe his indescribable range of human emotions. And also how art helped him cope with the lifelong diagnosis. Interesting that the "journey of fulfilling a prescription" was completely new to Tony. Perhaps there's a role here for MedComms and pharma here? Resourceful Tony somehow created an image illustrating the duality of "self-harming". But without being too graphic or stereotypical. Bravo! www.Pick-Art.co.uk
5th presenter = Jane Lamprill. Paediatric advisor and specialist medical writing Lay Language communications.
Personally, I found this presentation paradoxical with its overlong title! I did agree with the simplification of the NHS SEPSIS poster alerting parents when to contact 999 or go to AandE. The importance of user testing and feedback. Consider working with artists to optimize the use of colour(s) when writing for young children. In contrast, brief, eye-catching information works better for teenagers. Avoid words with potential double-meanings: e.g. study/trial; bugs/infections; airways/respiratory tubes etc.
6th presenter = Dr Laura Myden. Project manager and Operations director. www.luto.co.uk
Title: "Writing and testing lay-friendly health information".
A resource intensive but continuously iterative user testing focused on patients and the general public interactions. Use everyday words >>> jargon; clear headings; bullet points; table of contents.
Jane Lamprill asked whether "indexing" would also be useful for helping parents in finding emergency info quickly?
7th presenter = Keynote = Richard Stephens. Editor, Research Involvement and Engagement. Veteran patient advocate.
With useful Xmas-related graphics from his 19 y/o son. Perhaps a key lesson is to check and review the slide deck before you presenting them publically! Or risk potentially unwanteed surprise(s)! Research matters for patients/carers. Upskilling the NHS workforce; offers taxpayers’ value for money and credit to pharma. Note also: www.ncri.org/cancerpatients experiences. Grateful for invitation to the annual patient-led congress #efpBarcelona 2020.
* Importance of embracing digital platforms to reach a broader, inclusive and diverse patients in trials. For example, The Digitome [eyeforpharma webinar: 12/11/19]
Thank you very much St.Gilesmedical staff for serving warm lunch and mince pies etc.
Kudos to singer/songwriter Ms Neev Downes for background music on acoustic guitar.
To make sure you're included in announcements about future events just email Peter Llewellyn, if you haven't already done so, to register your interest.
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WHAT ELSE? This meeting was free to attend thanks to the generosity of the event sponsors, Stgilesmedical Companies attending included:
7.4 Limited
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