Anne-Marie Green
Anne-Marie Green
Communication Manager, Wiley
HIFA 2015Neil Pakenham-Walsh, co-founder and coordinator for HIFA.org (Healthcare Information For All), spoke with us recently about why he started the organization and why it's so important.

 

Q. What is HIFA2015 and what is your role?
A.
HIFA2015 stands for Healthcare Information For All by 2015. It is a global campaign launched in 2006 whose aim is to ensure that every person and every health worker worldwide would have access to the basic healthcare information that they need to protect their own health and the health of others, by 2015. The date 2015 proved to be hugely over-optimistic as efforts to improve the availability and use of healthcare information are a marathon rather than a sprint,. Thus, we are now becoming HIFA (HIFA.org) in recognition that this is a progressive process that may never be completed.

 

Neil Pakenham-Walsh
Source: Neil Pakenham-Walsh
I am a co-founder and the coordinator of HIFA, and jointly administer four other related forums: CHILD2015, HIFA-Portuguese, HIFA-EVIPNet-French and HIFA-Zambia. Together we count more than 12,000 members on five discussion forums in 3 languages. I support one part-time staff, the HIFA Steering Group, several HIFA working groups (HIFA volunteers working on specific projects), and 150 volunteers around the world, of whom 100 are HIFA Country Representatives. HIFA is funded by small and medium donations from more than 30 health and development organizations and publishers worldwide, and its current turnover is about 40,000 pounds sterling. Our main funder is the British Medical Association.

 

Q. How did it come about – what problems are you trying to solve?
A. Every day, tens of thousands of children, women and men die needlessly for want of simple, low-cost interventions – interventions that are often already locally available. A major contributing factor is that the parent, family caregiver or health worker does not have access to the information and knowledge they need, when they need it, to make appropriate decisions and save lives.

 

For example. A thousand children die needlessly from diarrhea every day in India alone, due to basic errors in care from parents and health workers. A literature review by us, published in 2009, concluded that there is “a gross lack of knowledge about the basics of how to diagnose and manage common diseases, going right across the health workforce and often associated with suboptimal, ineffective and dangerous health care practices.” (Pakenham-Walsh & Bukachi, 2009).

 

Importantly, this situation is not the fault of healthcare providers. Healthcare providers can only function effectively if their basic needs are met, including their need for reliable, actionable, appropriate healthcare information.

 

As a medical student in the early 80s, I visited my mother who was at that time teaching English in Djelfa, a town on the edge of the Sahara in Algeria. I spent a day with doctors in the emergency room of Djelfa Hospital, and I was moved by the huge difference between the care and facilities (including information) there as compared to St Georges Hospital, London, where I was a student.

 

Later I went to Peru as medical officer for a large archaeology project about 20km from Macchu Pichu, where I was also responsible for the primary care of the local population. I felt truly out of my depth and professionally isolated. My current career, after a few more years as a hospital doctor in the NHS and as a medical editor at the Wellcome Trust and WHO, now links back to those times in Algeria and Peru. For me, the frontline health workers (and indeed the citizens) who are promoting health and caring for the sick in low-resource settings are the unsung heroes. My work is all about trying to empower citizens and health workers to deliver safe, effective care and thereby reduce avoidable death and suffering, of which there is still so much in the world.

 

As the late James Grant, former director of UNICEF, said back in 1993, “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."

 

Q. What tools and techniques does HIFA use to inform caregivers and health workers? What has been most successful and why?
A.
The role of HIFA is not to educate caregivers and health workers per se (although some learning takes place incidentally), but to bring providers and users of healthcare information together in large, multidisciplinary forums, so that we can exchange experience to answer three fundamental questions:

 

  1. What are the healthcare information and learning needs of different groups of healthcare providers in different settings?
  2. What are the barriers and drivers to meeting those needs?
  3. What must be done - and how - to improve the availability and use of relevant, reliable and actionable healthcare information?

 

We are also building a unique repository of knowledge relevant to the above three questions. HIFA Voices is a database that brings together the key points expressed in HIFA discussions, together with health information and libraries literature pertaining to low- and middle-income countries. We are currently seeking funding for HIFA Voices. To date, The Lancet and Elsevier have pledged support, as well as mPowering Frontline Health Workers and Intel Corporation.

 

Q. There are striking examples on the HIFA website of the health consequences due to insufficient knowledge in some developing nations. Is this exclusively a developing world problem?
A.
The problem is more profound in low-income countries than in middle- and high-income countries, but lack of the ability to access healthcare information is indeed a global problem. For example, any low- resource setting in any country is likely to include lack of access to healthcare information (for example, a remote rural setting – indeed a whole journal is dedicated to “Rural and Remote Health”).

 

Furthermore, most information on the internet is in English and the majority of the world’s population does not speak English. Language is a real barrier to many, many people.

 

Also, there are hundreds of thousands of health websites and many of these contain misleading or incorrect information.

 

It is important to note that we are about to miss a huge opportunity regarding the health internet, as the World Health Organization calls it. The “.health” top-level domain (TLD) is very likely to be sold this year to a commercial entity without adequate public health safeguards. We and others, including WHO, have called for a moratorium, but the auction is now scheduled for September this year.

 

Q. Are there ways in which the academic research community can support HIFA?
A.
Yes, there are several ways that academics and their institutions can help accelerate progress towards the HIFA Vision. For example:
First, the realization of the HIFA vision is fundamentally dependent on high-quality, relevant research across the biomedical and social sciences. Cumulative synthesis of research (systematic reviews) is especially important but often overlooked. Implementation research (the scientific study of methods to promote the uptake of research findings) is of course especially relevant to HIFA. Also, library and information science research is critical, to understand better the global healthcare knowledge system and the drivers and barriers within the system in relation to the production, availing and use of appropriate, reliable healthcare knowledge.

 

Second, more specifically, HIFA forums include large numbers of individual academics doing research and supporting students in all the research areas described above. Academics take a very active role in the HIFA forums. Many academics are among the 100-plus HIFA Country Representatives, promoting HIFA within their own countries.

 

Third, many academic institutions have chosen to support the HIFA Vision, and are listed among our 200 HIFA Supporting Organizations. A few of these have provided financial contributions to HIFA.

 

Q. What do you see as the future for the availability of reliable healthcare information?
A.
The two key issues are access and content. Thanks to the rapid spread of internet access and mobile phones, the barriers to access are rapidly being taken down and more and more people have access to more information. Over the coming years, we shall need to give much more attention on how we can strengthen the production and sharing of reliable, appropriate, actionable content, in the right language and format, for citizens and health workers. And we shall need better tools to enable people to find it.