Meeting the information needs of Researchers and Users of health research
The WHO Constitution “enshrines the highest attainable standard of health as a fundamental right of every human being. The right to health includes access to timely, acceptable, and affordable health care of appropriate quality … as well as the underlying determinants of health, such as … access to health-related education and information.”
Increasing the availability of health research is fundamental to global health and the progressive realisation of the right to health. Researchers, policymakers, health professionals, and citizens need access to peer-reviewed research, relevant to their context, and in a language they can understand.
There is a growing momentum towards free (and open) access to research. Also, in the past 15 years there have been several important initiatives such as HINARI, eIFL, PERii (INASP) and the WHO Global Health Library, all of which have helped to improve the availability of research in low- and middle-income countries.
The trends are positive, but there continue to be many limitations and exclusions. There is a long way to go before all, or even the majority, of health research is freely available to all those who need it. (By ‘health research’, we refer mainly to research published in peer-reviewed journals, but also including related publications such as editorial and readers’ commentaries, research communication pieces, research syntheses, and policy briefs.)
HIFA Access to Health Research working group
The HIFA Access to Health Research working group is a group of HIFA volunteers who lead the HIFA community in exploring ways to improve the availability and use of health research. The group is building on the legacy of HIFA discussions 2006-2015, and especially the major thematic discussion on these issues held in 2015 (below). The current members are:
Claire Allen is Operations Manager at Evidence Aid, UK. Professional interests: Evidence Aid (www.evidenceaid.org) provides evidence for people in disaster preparedness and response to make better decisions. Areas of interest = humanitarian crises, natural disasters and major healthcare emergencies (disaster = when a country is unable to cope with the disaster/crisis or emergency). callen AT evidenceaid.org
Virginia (Ginny) Barbour is Executive Director of the Australasian Open Access Strategy Group, a position she has held since 2015. In 2004, she was one of the three founding editors of PLOS Medicine, finally becoming Medicine and Biology Editorial Director of PLOS from 2014 until 2015. She has a part time position split between the Library and as Professor in the Office of Research Ethics & Integrity at Queensland University of Technology (QUT). She is Chair of COPE (Committee on Publication Ethics). She has a medical degree from Cambridge University, and a DPhil from the University of Oxford. She has been involved in the development of a number of reporting guidelines including CONSORT, PRISMA and TIDieR statements. She has been and is currently involved with a number of Open Access, publishing, and ethics initiatives. She has an academic title as Professor in the School of Medicine at Griffith University, Queensland and is also an honorary Professor at the University of Queensland. She is based in Brisbane, Australia. Her ORCID ID is: 0000-0002-2358-2440
Jose Florencio F. Lapena Jr is President of both the Asia Pacific Association of Medical Journal Editors (APAME) and Philippine Association of Medical Journal Editors (PAMJE). He is Professor of Otorhinolaryngology at the University of the Philippines and Attending Pediatric Otolaryngologist, Cleft and Craniofacial Plastic Surgeon at the Philippine General Hospital. He heads the Mentoring Program of the University of the Philippines Manila and is on the Editorial Board of and a reviewer for 6 journals and reviews for 6 others.
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 (www.dgroups.info), a partnership of 18 international development organisations promoting dialogue for international health and development. neil.pakenham-walsh AT ghi-net.org
Anne Powell is Programme Manager, Information Access and Publisher Liaison, INASP, Oxford, UK. INASP is an international-development charity that supports the access, communication and use of scholarly research. INASP works with over 80 countries, providing focused support to partners in 23 of those countries. Anne has a special interest in developing and implementing INASP’s access activities, supporting libraries and consortia with access to and use of e-resources. She works with publishers to offer affordable, sustainable access to online research literature, within INASP principles (see www.inasp.info/en/network/publishers/responsible-engagement-publishers/)
Ylann Schemm (@ylannschemm) serves as the Elsevier Foundation Program Director which, provides partnership grants to advance global health, research and sustainability in developing countries and promote diversity in science. She is also the chair of the communications team for Research4Life, a unique UN-pan publisher partnership to provide free or low cost access to researchers in the developing world. Ylann is based in Amsterdam.
Isabelle Wachsmuth-Huguet, MSc, MPH has been working for World Health Organization (WHO) since 2003 and has 20 years of expertise on international network promoting and implementing knowledge management solutions in both high and low income countries. She is currently Project manager, Health Systems and Innovation Cluster, Service Delivery & Safety (SDS), Emerging Issues, Quality Universal Health Coverage (QUHC), at WHO Geneva. She is also the coordinator and lead moderator of the WHO Global Francophone Forum – Health Information For All (HIFA-Fr: www.hifa2015.org/hifa-evipnet-francais).
Thematic discussion on access to health research 2015
The HIFA forum brought together more than 8000 health researchers, publishers, librarians, policymakers, clinicians and information professionals to focus on key questions around access to health research (below). The discussion (selected highlights here)provided a unique opportunity for HIFA members worldwide to contribute their experience and expertise towards the drafting of the MANILA DECLARATION ON THE AVAILABILITY AND USE OF HEALTH RESEARCH INFORMATION, launched in Manila, 26 August 2015.
The discussion was supported by COHRED, APAME and The Lancet as an official activity in the run-up to the Forum 2015 Global Forum on Research and Innovation for Health, Manila, 24-27 August 2015, held in conjunction with the Asia Pacific Association of Medical Journal Editors 2015 Annual Convention, Manila, 25-26 August 2015. Help us to publicise the discussion.
The discussion continues 24/7… Join the HIFA email discussion forum here.
What can be done to accelerate progress?
1. How can health research from LMICs be made more visible and accessible?
2. What more can be done to make research freely available to users in LMICs?
3. How can research be made available in the right language, both for producers as well as consumers of health research?
4. How can we improve access to different formats required by different users in different contexts (eg abstracts, full text of research paper, commentaries, policy briefs)?
5. How can we improve the availability and use of health research in LMICs through non-traditional dissemination channels (eg social media, communities of practice, blogs, mobile phones)?
These and other questions were explored on the HIFA forum. The key points from the discussions were presented at a Special Session on Access to Research at Forum 2015, on 26 August 2015, and provided input for consideration at Forum 2015 and any declarations that may emerge.
We are grateful to The Lancet, COHRED, and APAME for supporting the thematic discussion in 2015. We are also grateful to Elsevier and The Lancet for their ongoing support for the HIFA Voices database (hifavoices.org).
Elsevier has provided funding for the HIFA Access to Health Research initiative. This funding goes solely to pay for the time of the HIFA coordinator and not to any of the working group, all of whom are volunteers.