PIF’s membership is rich and diverse. There are representatives in hundreds of information producing organisations across the UK, working in every sector.
They have a wealth of experience and skill. Every month we aim to highlight the work of one of PIF’s members.
PIF Member of the Month – December 2018
Neil Pakenham-Walsh – Co-ordinator, HIFA
What is your current role and what do you enjoy about it?
I coordinate HIFA, Healthcare Information For All, which is a global campaign to improve the availability and use of reliable healthcare information in low- and middle-income countries (LMICs). We have 19,000 members from 178 countries, interacting on six forums in four languages (English, French, Spanish, Portuguese).
I am passionate about my work because we are highlighting and addressing what I feel is the biggest global health challenge. Every day thousands of children and adults die needlessly because they do not receive basic life-saving interventions – interventions that are often locally available but are simply not provided due to indecision, delays, misdiagnosis, and incorrect treatment. Many would still be alive today if those responsible for their care had access to basic healthcare information.
What is the key area you are working on at the moment?
One key area is multilingualism. We are working with WHO to address three global challenges relating to multilingualism. First, to ensure that every person in the world has access to the healthcare information they need to protect their own health and the health of those for whom they are responsible – in a language they can understand. Second, to support global health communication in languages other than English. And third, to provide a bridge between English, French, Portuguese and Spanish speakers with an interest in global health.
We are also campaigning to make essential healthcare information available on every mobile phone. There are great sources of basic information such as the Red Cross First Aid app and Hesperian’s Where There is No Doctor, but their penetration into the general population is infinitesimally small.
And we are working to improve the availability of reliable information on medicines – for both prescribers and users of medicines.
What’s your biggest health information challenge?
There continues to be a lack of political and financial commitment to improve the availability and use of healthcare information, at all levels of the global healthcare information system. We pointed this out in The Lancet back in 2004, but the issue continues to be neglected.
Connectivity is improving and mobile phones are (or should be) a game-changer, but such connectivity is leading to dangerous misinformation. Health literacy – including the ability to find relevant, reliable information and to differentiate it from misinformation – is perhaps the single biggest challenge. But we can’t expect rapid progress in health literacy – better ways need to be found to help people find what they need.
What’s the best bit about working in health information?
The best bit is the sense that we are contributing to improvements in health care for countless people. It’s wonderful to be connected with such a diverse community of frontline health professionals, librarians, publishers, researchers, policymakers, patient representatives and others all around the world, and to play a part in facilitating their work.
Why did you join PIF?
I joined Patient Information Forum because I am really keen to learn about some of the amazing work that people are doing in this area in the UK and to share it with others in LMICs.
What was your lightbulb moment in health information?
My first lightbulb moment was in Peru in 1987, where I was a volunteer rural doctor. A mother carried her sick daughter to our village, from high up in the valley, but the child died on the way. The child died from dehydration and could have been saved simply by providing oral rehydration with sugar and salt solution. I subsequently learned that huge numbers of mothers around the world have the false belief that if their child has diarrhoea, they should give less fluid – the exact opposite of what they should do. Hundreds of thousands of children continue to die needlessly from badly-managed acute diarrhoea every year.
My second lightbulb moment in health information was a speech by James Grant, the late, former Executive Director of UNICEF, in 1993. He said: “The single biggest piece of unfinished business of the 20th century is to extend the basic benefits of modern science and medicine … The most urgent task before us is to get medical and health knowledge to those most in need of that knowledge. Of the approximately 50 million people who were dying each year in the late 1980s, fully two thirds could have been saved through the application of that knowledge.” Here we are in 2018 and it is still unfinished business. We are all in it for the long haul.
Previous Members of the Month:
- November 2018: Ben Colman – Information Services Manager, Salford Royal NHS Foundation Trust
- October 2018: Emily Peters – Patient Information Editorial Officer, Bloodwise
- September 2018: Richard Wyatt-Haines – Founder and Director, Health and Care Videos