Dear Joseph,
Many thanks for your message, where you ask:
"Permit me as I wonder that as a non profit in collaboration with the WHO, for almost three years (if I am correct), is it not time that WHO information and notices and advisories should automatically contain the HIFA vision statement on universal access to accurate health information? Is there something that HIFA has not done, is not doing, or needs to do within the mutually beneficial collaboration to make such automaticity happen?" https://www.hifa.org/dgroups-rss/who-publishes-who-medically-important-a...
Great questions! I address this issue in an interview I had with The Scholarly Kitchen (TSK) in August 2023 to publicise our global survey on stakeholder views on access to reliable healthcare information and how to accelerate progress. Extracts below and full text here:
https://scholarlykitchen.sspnet.org/2023/08/21/universal-access-to-relia...
TSK: "Please can you tell us a bit about HIFA, including the history, purpose, and goals of the organization?"
"HIFA is a global campaign for a world where every person has access to the information they need to protect their own health and the health of others. It is administered by a small non-profit called Global Healthcare Information Network (GHI-Net), based near Oxford UK. HIFA emerged following the publication of a 2004 Lancet paper, which argued that the global evidence ecosystem isn’t working, due largely to intrinsic weaknesses in the system itself, with consequent and pervasive lack of availability of timely, relevant, reliable healthcare information at all levels of care, especially in low- and middle-income countries. The paper called on the World Health Organization (WHO) to champion the goal of universal access to reliable healthcare information. WHO encouraged GHI-Net to take the lead. Our primary purpose is to champion universal access and strengthen the intrinsic weaknesses — poor communication and coordination, poor understanding, and poor advocacy across the global evidence system — as identified in the Lancet paper. We started with a donation of £2,000 from The BMJ, which we used to develop and launch HIFA in 2006 in Mombasa, Kenya. We were confident that we could make a difference, thanks to the recent emergence of group email communications, which enables us to facilitate in-depth global discussions among thousands of people on a wide range of topics relating to information needs and how to meet them. Our approach is based on Wenger’s ‘community of practice’ concept and, within weeks, enabled us to connect 1,000 professionals representing all parts of the global evidence ecosystem. Our network continues to grow and we now have 20,000 members in 180 countries."
TSK: "Looking ahead, what do you see as HIFA’s greatest opportunity (or opportunities) over the next three to five years?
"Today efforts are fragmented, and high-level political and financial investment is almost absent. For example, there is no single funder and no government that is committed to universal access to reliable healthcare information. The world’s doctors [through the World Medical Association] are the only stakeholder group to have a collective policy declaration on universal access. I predict that all of this is about to change, and I am excited by it.
"The driver of change will be WHO. I repeat the clarion call of our Lancet article in 2004. The greatest opportunity that we are focusing on right now is for WHO to explicitly commit to the goal of universal access to reliable healthcare information. This would be a game-changer.
"The concept isn’t new to WHO. Universal access is implicit in WHO’s Constitution, published 75 years ago: ‘The extension to all peoples of the benefits of medical, psychological and related knowledge is essential to the fullest attainment of health’.
"Throughout its history, WHO has arguably been the world’s leading publisher of health information. However, when I worked there as an editor in 1995, the focus of the staff I talked to was on their role as a publisher and provider of information. There was no initiative to convene stakeholders. This changed to a limited extent in 2000, when I attended the launch of Hinari, an initiative launched by WHO in collaboration with publishers, to improve the availability and affordability of e-journals (and, later, e-books). The initiative has thrived and remains relevant and important. But it only addresses one aspect of the global evidence ecosystem.
“We’re not just fighting an epidemic; we’re fighting an infodemic,” said Dr Tedros, Director-General of WHO at the Munich Security Conference in February 2020. In response WHO set up an Infodemic Management unit and convened social media and tech companies to find solutions. Today it is clear that the concept of universal access is now at the highest levels of WHO as seen, for example in the title of this May 2023 paper co-authored by the Deputy Director-General of WHO Dr Zsuzsanna Jakab: 'Universal health information is essential for universal health coverage’
"I believe there is now unstoppable momentum for WHO to explicitly champion the goal of universal access to reliable healthcare information."
TSK: "How will you make this a reality – what are the biggest challenges/barriers?"
"We have taken the first steps by becoming an NGO in official relations with WHO in 2022. We have agreed a collaboration plan with WHO... The centrepiece of the consultation is a global survey..."
UPDATE: We are now writing up the report of the global consultation for submission to WHO. We are grateful to the many organisations and individuals who have helped to make this possible, recognised on our landing page: https://www.hifa.org/projects/hifa-who-global-consultation-2023
2,410 people responded to the survey from 136 countries, representing every aspect of the global evidence ecosystem (those who generate, publish, synthesise, package, find and apply evidence). The responses demonstrated overwhelming support for WHO to make a public commitment to accelerate progress towards universal access to reliable healthcare information and support stakeholders to develop a strategy for universal access. We believe this could become a reality within the next 1-2 years. WHO would take the lead in driving whole systems change across the global evidence ecosystem. The vision of universal access to reliable healthcare information would no longer be dependent on the actions of a tiny NGO with 1.4 staff but would be actively promoted by the world's leading global health agency. HIFA is far too small to achieve this vision alone, but I am confident it is possible if WHO takes the lead, with support from HIFA and other partners.
One final point: The agreed HIFA-WHO Collaboration Plan describes 10 activities over 2022-2024, budgeted at a total of USD$340k. In 2023 we raised $USD15k (from Oxford PharmaGenesis, Elsevier Foundation, National Institute for Health and Care Research (UK) and others). This allowed us to proceed and complete Activity 1: A global consultation of stakeholders, as described above.
We are now seeking a further USD$15k to deliver Activity 2 in 2024: 'To identify a set of concrete actions and steps that may support efforts to accelerate progress towards achieving universal access to reliable healthcare information'. Note that WHO has agreed here that our common goal is *universal access to reliable healthcare information*. The next step would be a public commitment by WHO to this goal and proactive support to develop a strategy to achieve it.
I would like to say a last word about HIFA finances: HIFA urgently needs funding to continue our work in 2024. I invite all HIFA members and organisations to contribute through our dedicated fundraising page: https://hifa.online-donation.co.uk/general/
Please feel free to forward this message to anyone who may be interested to help realise the HIFA vision: a world where every person, every health worker and every policymaker has access to the reliable healthcare information they need to protect their own health and the health of others.
With thanks, Neil
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
