Thank you in advance for your help to prepare and contribute to a HIFA Roundtable at the Geneva Health Forum on 24 March. You can read more about it here:
As is always the case with physical conferences, only a very few people will be able to attend this event in person, and this is why we are especially keen to invite contributions from HIFA members worldwide through the HIFA forum.
The Roundtable will address five questions and our first question is this:
1. Increasing the availability and use of quality health research information is fundamental to the successful attainment of global health and progressive realization of the right to health. Who needs access and why? What is our vision of access to and use of health research information in LMICs in 2030?
A brief reflection from me: The more I work in this field the more I am persuaded that improving the availability of reliable healthcare information is indeed fundamental to all the health-related SDGs. When we talk of "health research information" we refer especially to peer-reviewed research papers, as typically published in journals. Health research information is in itself a form of 'reliable healthcare information', and also serves as the basis for all other forms of 'reliable healthcare information'. Who needs access to health research information and why? Everyone needs access to health research information, either directly or indirectly. Direct access is needed by the full range of audiences, ranging from researchers and health professionals to policymakers and the general public. Patients are increasingly, and understandably, demanding access to original research papers on conditions that affect them. Publishers, librarians, information professionals, systematic reviewers, health education units, NGOs, UN agencies, journalists... all require access to health research information, which may then be synthesised, interpreted and repackaged in the right language and format to be useful to different audiences.
My vision of access to and use of health research information in LMICs in 2030 is that all, or almost all, health research information will be freely available through open access. I'm not sure this will actually happen, it may take longer. Meanwhile it would be good to see more authors taking advantage of publishers' permissions to self-archive the pre-print or post-print in an open-access repository. I would like to see current challenges largely addressed and thereby no longer a major problem. I'm thinking of issues such as financing of publications, author processing charges, and predatory journals. I'd like to see research more closely aligned with actual needs, including burden of disease, and preceded by research synthesis of available evidence (it's estimated that some 85% of research spending is wasted). It's vital also to maintain and increase both the quality of research, the quality of papers, and the usefulness for those who need it - including being in the right language. HIFA's Multilingualism group has long been advocating for abstracts to be available in the language of the country where the research was undertaken, and I was delighted to learn recently that the World Association of Medical Editors has accepted and adopted this recommendation for medical journals worldwide.
More specifically I would like to see more research on quality of care at all levels (from home to facility). We know a lot about medical causes of death but relatively little about quality of care. A recent Lancet study found that *most* avoidable deaths worldwide are due to poor quality of care. We now need to understand the determinants of such poor care, including the contribution of (lack of) healthcare information.
Above are some preliminary thoughts from me to help get the ball rolling. What do you think?
Please email any thoughts to: email@example.com
The Geneva Health Forum Roundtable is coordinated by HIFA steering group members Neil Pakenham-Walsh and Joseph Ana, together with the HIFA Access to Health Research working group. HIFA is grateful to The Lancet and Elsevier for their ongoing support of the HIFA Access to Health Research project.
Best wishes, Neil
Coordinator, HIFA Project on Access to Health Research - Supported by The Lancet and Elsevier
Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org
HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 19,000 members in 177 countries, interacting on six global forums in four languages. Twitter: @hifa_org FB: facebook.com/HIFAdotORG firstname.lastname@example.org