Re: https://www.hifa.org/dgroups-rss/caregiver-concern-clinical-deterioratio...
Dear Hajime,
Thank you for letting us know about the Confederation of Meningitis Organisations campaign to raise awareness of the early symptoms of meningitis and sepsis.
From the website https://www.comomeningitis.org/ I read:
'The Confederation of Meningitis Organisations (CoMO) is a worldwide network of people and groups who are driven by a shared purpose to defeat meningitis.'
'What we do: CoMO brings together patient groups, health care professionals and organisations, meningitis survivors and families to help prevent meningitis through: Raising awareness of meningitis, Advocating for better meningitis prevention, treatment and support worldwide.'
It is critically important that parents and caregivers are able to recognise the early symptoms. A first step is to understand the extent to which they are currently able to recognise the symptoms, in different contexts and countries. I just did a simple Google search to try to find any papers on this subject, and I couldn't find any. It would also be important to assess the relation between late presentation (associated with failure to recognise danger signs) and subsequent morbidity and mortality. Late presentation appears to be a major cause of poor outcomes, yet it is not easy to get data on this. Thirdly, we need to know how to reach parents and caregivers with the basic healthcare inforamtion they need to recognise symptoms.
For all these challenges, a dedicated project on HIFA and CHIFA could make an important contribution. I would like to propose we plan a joint CHIFA (and HIFA) project on meeting information needs of parents, caregivers, health workers to protect children (and adults) from the devastating impact of meningitis. The Project would include convening a working group of experts and HIFA volunteers; running a deep-dive exploration on the HIFA ad CHIFA forums; and presenting the findings in a webinar or upcoming conference, perhaps on World Meningitis Day (5 October). This project would cost £5000 ($6750), which would not only enable the project itself, but will also contribute to the financial viability of HIFA and CHIFA (two-thirds of our income comes from projects like this).
To see more about HIFA projects: www.hifa.org/projects
I invite CHIFA members to comment and to contribute.
Best wishes, Neil
CHIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org