HIFA Voices tackles information poverty to improve global health
Healthcare Information for All’s new program aims to provide greater access to health knowledge where it’s needed most
By Neil Pakenham-Walsh, MD Posted on 4 June 2014
Every day, thousands of people around the world — including 10,000 children — die needlessly as a result of failure to receive basic, low-cost preventive or curative interventions that are often locally available. A major contributing factor is the unavailability of appropriate, reliable, basic healthcare knowledge, especially for citizens and frontline health workers. People are literally dying for lack of knowledge.
In India, for example, many children with diarrhea are given less to drink that normal rather than more, increasing their risk of dehydration and death. There, the average child experiences three episodes of diarrhea each year, and in 2012, 140,000 children died from complications caused by diarrhea, according to a 2013 report by GBH Health.
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Dr. Neil Pakenham-Walsh is the coordinator of the HIFA campaign (Healthcare Information For All) and co-director of the Global Healthcare Information Network. He is also currently chair of the Dgroups Foundation, a partnership of 16 international development organizations promoting dialogue for international health and development.
He began his career as a hospital doctor in the UK, and has clinical experience as an isolated health worker in rural Ecuador and Peru. For the last 20 years he has been committed to the global challenge of improving the availability and use of relevant, reliable healthcare information for health workers and citizens in low- and middle-income countries. He is also interested in the wider potential of inclusive, interdisciplinary communication platforms to help address global health and international development challenges. He has worked with the World Health Organization, the Wellcome Trust, Medicine Digest and INASP (International Network for the Availability of Scientific Publications). He is based near Oxford, UK.
Many health professionals caring for children in low- and middle-income countries have inadequate knowledge for managing important childhood illnesses, exposing their patients to ineffective or even harmful treatments. Another major example of poor quality care is the use of medicines: the World Health Organization estimates that "more than half of all medicines are prescribed, dispensed or sold inappropriately, and that half of all patients fail to take them correctly," according to their 2012-13 report "The Pursuit of Responsible Use of Medicines: Sharing and Learning from Country Experiences."
Appropriate access to and use of healthcare knowledge is a prerequisite to address these global health challenges. That's the challenge the HIFA campaign is trying to overcome.
HIFA Voices will support global efforts to improve the availability and use of timely, relevant, reliable healthcare information. The initiative builds on the growing success of HIFA (Healthcare Information for All), a global campaign launched in 2006 at the 10th Congress of the Association for Health Information and Libraries in Mombasa, Kenya.
Through HIFA Voices, we aim to answer three critical questions:
- What are the healthcare information and learning needs of different groups of citizens and health workers in different settings?
- What are the barriers and drivers to meeting those needs?
- What must be done — and how — to improve the availability and use of relevant, reliable, actionable healthcare information?
The answers to the above questions are complex; there is no single solution to the global challenge of healthcare information poverty. Improving the availability of healthcare knowledge requires a systems-thinking approach, bringing together the experience and expertise of all those involved in the provision and use of healthcare knowledge (Godlee et al: "Can we achieve health information for all by 2015?")
HIFA now supports five global discussion forums in three languages (English, French, and Portuguese) with more than 12,000 members in 174 countries. We collaborate with the World Health Organization (WHO) and other organizations such as International Child Health Group of the Royal College of Paediatrics and Child Health and the Zambia UK Health Workforce Alliance. Our vision is that every person and every healthcare provider should have access to the information they need to protect their own health and the health of those for whom they are responsible.
There have been important steps forward in the past 15 years: innovative electronic access models such as the HINARI Access to Research in Health Programme, part of Research4Life; the rise of open access publishing; and increasing availability of information and communication technologies, especially internet access and mobile phones and tablets. At the same time, there have been dramatic improvements in key health indicators such as child mortality, due largely to increased delivery of basic, life-saving interventions.
But we are still a long way from where we want to be as we approach 2015. People are still suffering and dying for lack of access to healthcare information. As technological boundaries fall away, the priorities for the future will center more on facilitating access to relevant and reliable content, appropriate to the needs of different groups of end users, in different languages, in different settings, and with different levels of literacy and education. This is particularly important in low and middle income countries (LMICs), where "911" is not an option and specialist help is rare – and may not even exist. In LMICs in particular, the decisions of a citizen or primary health worker can mean the difference between life and death – decisions as simple as whether to give a child with diarrhea more or less fluid.
HIFA seeks to address the complex issue of how to improve the availability and use of healthcare information in LMICs through a 3-part strategy. The first part, the forums, is now fully developed. The forums continue to grow, bringing together providers and users of healthcare information to explore information needs and how to meet them. HIFA members include health professionals, researchers, journal publishers, indexers, systematic reviewers, international and national guideline developers, producers of reference and educational materials, health educationalists, librarians, information professionals and many others.
HIFA Voices is the second part of the strategy and will harness the experiential knowledge that is shared every day on HIFA forums, so that knowledge of information needs — and how to meet them — is available to planners and implementers of health information services and products.
Our innovative approach, developed in consultation with WHO and others, is to capture short, verbatim extracts — "HIFA Quotations" — from HIFA discussions. HIFA Quotations are being collated into HIFA Voices, a simple database that allows filtering across different parameters: healthcare providers (e.g., Community Health Workers), health issue (e.g., child health), geography (e.g., Kenya), and stage in the knowledge cycle (e.g., production of reference and educational materials). In addition, HIFA Voices will collect HIFA Citations reflecting the professional outputs (formal and informal) of health information and library professionals in low-income countries. A model bibliography for Kenya is currently under development, coordinated by Association for Health Information and Libraries in Africa (AHILA) president Nasra Gathoni.
Full functional linkage will be established to a range of databases including IntraHealth's Global Resource Center (GRC), the world's leading database on Human Resources for Health, allowing users of the GRC to "drill down" their searches into HIFA Voices, and vice versa.
HIFA Advocacy Programme
HIFA Voices will in turn support the third component, the HIFA Advocacy Programme, which aims to persuade government, civil society, private sector and others to commit to improve the availability and use of healthcare information.
Over the coming months, with sponsorship from Elsevier, we shall include thematic discussions on the health information needs of researchers and higher-level professionals, and how these needs can be more effectively met. This will include discussion around HINARI and other access initiatives, as well as existing and future ways to fund open-access research. The outputs from these discussions will then be tag-worded and captured in the HIFA Voices database to help inform future health information programs and services. By the end of 2014, the HIFA Voices database will have substantial content on the health information needs of researchers and higher-level professionals, and how these needs can be more effectively met.
The above will complement development of other parts of HIFA Voices, including content on the information and learning needs of community health workers and other primary health workers, sponsored by mPowering Frontline Health Workers and Intel. And the development and maintenance of the IT infrastructure of the database is enabled by sponsorship from The Lancet. [divider]
Who will use HIFA Voices, and how will it make a difference?
HIFA Voices will be used by:
- Health information services implementers, managers, and librarians
- WHO and other organizations that produce and disseminate guidelines, evidence and health information
- Health systems researchers
- Researchers specializing in knowledge translation and implementation science, publishing and librarianship.
HIFA Voices will:
- Help inform, and thereby progressively increase, the individual and collective effectiveness of diverse health information programs worldwide, ranging from WHO publications and HINARI, through to mobile phone and grassroots health education initiatives
- Promote increased collaboration and cooperation, and decreased duplication among health information projects and services worldwide
- Build the evidence base needed to provide confidence to funding agencies and governments to invest in health information and knowledge services that meet the needs of healthcare providers
- Harness knowledge of diverse stakeholders around critical issues on human resources for health.
Dr. Simon Lewin, a member of the technical team developing the WHO guidelines on Optimizing for Maternal and Newborn Health, stated: "As the HIFA Knowledge Base evolves over the coming years, it has the potential to become a leading source of practical and experiential data to help inform future international guidelines by WHO and other organisations, on a range of issues relating to health systems, human resources for health, and availability and use of health information."
The International Medical Informatics Association (IMIA) has offered to provide technical assistance. Expert advisers include Ian Roberts (Head Librarian, WHO Headquarters), Pascal Mouhouelo (Head Librarian, WHO Africa Regional Office) and John Eyers (Emeritus Librarian, London School of Hygiene and Tropical Medicine (LSHTM) . AHILA, IMIA, IntraHealth International USA, LSHTM, and WHO Africa Regional Office Library are all HIFA 2015 Supporting Organisations.[divider]
Elsevier's support for HIFA Voices
Following on The Lancet's longtime support of HIFA, Elsevier has pledged an annual sponsorship for HIFA Voices to support the development of this global health resource. Two strong Elsevier proponents are Anne Kitson and Ylann Schemm, who will work closely with the network this year from a health publishing and corporate responsibility perspectives. One goal is to form a working group on meeting information, access and usage needs of researchers, policymakers, health professionals, and citizens in low- and middle-income countries.
Kitson, Executive VP of Health and Medical Sciences, noted:
As a publisher of critical health information, I'm very aware of the role that Elsevier can play in supporting the foundation of evidence based healthcare in developing countries. Working with HIFA also provides us with an important new channel to understand the needs and circumstances experienced by health care providers and health information professionals in the field. I welcome our collaboration.
Schemm (@ylannschemm), head of Corporate Responsibility for Elsevier, said:
Over the past seven years, HIFA has emerged as a key global health information forum bringing together grassroots needs, cutting-edge research and access solutions. Supporting HIFA's work in further developing the resource is an excellent fit with our own corporate responsibility goals to build research and health capacity in low- and middle-income countries. I'm also excited to reach out to our Elsevier Foundation medical library grant recipients and Research4Life communities to see how we can contribute to this project on different levels.