Below are the notes of my presentation yesterday at the Launch Event, for the benefit of those who couldn't participate. Thank you everyone for your support.
PRESENTATION: Universal access to reliable healthcare information: a global stakeholder consultation
Neil Pakenham-Walsh, HIFA Coordinator
Countless people are dying or suffering every day as a result of failure to access and apply reliable healthcare information. They are being denied the benefits of medical knowledge, even at a basic level.
First, I would like to clarify what we mean by 'universal access to reliable healthcare information'. We use this term to have a wider meaning than it suggests, namely that it is the information people need to protect their own health and the health of others. By definition, such information should not only be accurate and up to date, it should also be unbiased and reflect, as far as possible, the cumulative evidence based on robust research; it should clearly be in the right language, technical level, and format; it should be relevant and applicable to the person’s immediate situation (which is always changing); and the person should be empowered to differentiate it from the barrage of misinformation that does not fulfil these criteria.
Today we are launching the global consultation on Universal access to reliable healthcare information, in official relations with the World Health Organization (WHO)
Why are we doing this consultation?
HIFA has been promoting universal access to reliable HI since 2006. Last year we became an NGO in official relations with WHO. We now have a collaboration plan with WHO to accelerate progress. The plan has 10 activities, and HIFA is responsible for raising the funds to implement these. We now have partial funding - £4k ($5k) - to undertake the first activity: a global stakeholder consultation.
Our objectives are twofold:
1. We want to get stakeholder perspectives on universal access to reliable healthcare information, ways to achieve it, and specifically what WHO and HIFA might do differently in 2024 and beyond. We are directing our consultation to all stakeholders in the global evidence system, and this includes those who apply evidence, such as health workers and patients, as well as those who produce or disseminate evidence, such as researchers, publishers and librarians.
2. We need to demonstrate massive public support for universal access, because this is the surest way to secure the high-level political and financial support that is currently absent. Since HIFA started in 2006, more than 450 individual health and development organisations worldwide have endorsed the goal of universal access as HIFA supporting organisations. But this is not enough. There is no single funding agency that is committed to universal access. Thanks to advocacy by HIFA, the World Medical Association representing 10 million doctors now has a policy statement on universal access. But this is not enough. Other stakeholder groups in the global evidence ecosystem have yet to do so.
But all of this is about to change, and we are excited by the prospect. We are confident that WHO itself will imminently commit explicitly to the goal of universal access. And this would be a game-changer.
Why are we confident that this transformation is imminent? First, universal access is embedded in WHO's Constitution; second, WHO already has a strong track record on health information initiatives such as Hinari; third, the Deputy WHO Director General recently co-authored a paper titled "Universal health information is essential for universal health coverage". The goal of universal access to reliable healthcare information is already firmly in WHO's DNA. It just needs a spark.
And that spark is the global consultation that launches today. We - individually and collectively - can provide that spark by demonstrating massive public support for universal access. We need 10,000 survey responses to ensure that this spark is big enough to catch light.
WHO rather than HIFA would be the leading champion for universal access, and HIFA would have a supportive role. WHO is the only organisation that has the authority and remit to convene stakeholders to develop a global strategy, a global action plan to strengthen the global evidence ecosystem and deliver universal access to reliable healthcare information.
What is the survey about? The survey has 21 questions asking people's views, based on personal experience, about the importance of universal access to reliable healthcare information, pathways to universal access, and what specifically WHO and HIFA can do. The survey is available in nine languages.
We are grateful to our main sponsors (£2k), National Institute for Health and Care Research (UK) and the Elsevier Foundation, and bronze sponsors (£100): Instituto Antonio Vidal (Honduras), eCancer, Enablement, and International League of Dermatological Societies. We are also grateful to HIFA members Vikram Patel and Geoff Royston for personal donations. We still need £7k to cover our costs and invite your support.
Special thanks to our technical partners who have been amazing: JBI (formerly Joanna Briggs Institute), IFLA Evidence for Global and Disaster Health, and Costello Medical Consulting. Thank you also to The BMJ, The Lancet and the World Medical Association for complimentary publicity.
HOW YOU CAN HELP
1. Please complete the survey yourself: www.hifa.org/survey2023
2. Forward the survey to your colleagues
3. Become an organisational sponsor or make a personal donation: https://hifa.online-donation.co.uk/consultation
In summary, universal access to reliable healthcare information is only achievable if all stakeholders work together. HIFA alone cannot do this. Now we are working with WHO and this represents a huge opportunity for global health. Our first test is to demonstrate massive public support by getting 10,000 responses to this survey. We are counting on you to help make this happen.
HIFA 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
