I am glad that the thematic discussion has started as we head to Geneva on 24th March 2020 for the GHF Access to Research Information Conference Roundtable. Neil thanks for kicking the starting ball.
Untapped sources of health information in LMICs (who have less input into original trial and trial results) is a challenge when it comes to production, availability and use of health information. On availability of health Information, LMICs are known to contribute/produce only a small fraction of the world health literature, about 10% in some reports, when considering original trials for a myriad of reasons from poor structure, poor infrastructure, poor funding and so on. Perhaps the time has come to raise awareness in LMICs that it can increase its proportion of available health information by maximizing the advantages of Real World Data ( RWD)
and Real World Evidence (RWE) methods which require less expense, and can be
generated from already existing infrastructure for routine daily health care.
Before use, access to available health information is key. Access is improving even in remote LMICs but a lot more needs doing if health is truly to be treated as a human Right. "The access is still not as widespread as it could be, as the International Agency for Research on Cancer has said: “In 2010, the total annual cost of cancer was estimated to reach US$ 1.16 trillion. Yet about half of all cancers could be avoided if current knowledge was adequately implemented". (Open Pharma).
On the use of data, especially locally gathered and contextual data and evidence, LMICs are uniquely placed to increase RWD and RWE approaches. Since the late 1990s and the advent of the internet, the use of computers and other electronic tools increasingly plays a part in gathering, storage of health-related data. This database holds information that allows care providers, policy makers and researchers to better design and conduct clinical trials in their setting, answers to questions are more easily noticed and provided. Using new more advanced analytical capabilities to analyse the data helps clarity and therefore application of the results to improve care by the clinician, carer and patient. RWD being the data relating to patient health status and/or the delivery of health care, and are routinely collected from a variety of sources including ‘Product and disease registries’, ‘Electronic health records (EHRs)’, ‘Patient-generated data including in home-use/care settings’ and ‘Data gathered from other sources that can inform on health status, such as mobile devices and social media’. RWE is the clinical evidence regarding the usage and potential benefits or risks of a medical product derived from analysis of RWD. LMICs can learn from the HICs, where inspite of almost exclusively having the original trial results and use in policy making and at point of care, are also using RWD and RWE to monitor post marketing safety and adverse events, and regulation. They are also used in guideline development / tools for health improvement, clinical and observational studies and simple trials.
e.g. ‘The 21st Century Cures Act, passed in 2016, places additional focus on the use of these types of data to support regulatory decision making’. Awareness creation is needed in LMICs about untapped sources of health information in LMICs (who make less input into original trial and trial results and have less material and human resources).
There will be no point producing and making available all manner of health information, creating and freeing access across both South and North, advocating the use of evidence for policy making, decision making and treatment if there are no takers: no or not enough trained human resource equipped with relevant knowledge and the skills to work with the information to improve outcomes. Education and training particularly in LMICs, is the answer to the potential challenge. The users will need support to have better access through improved connectivity and cost reduction as more and more users come on line. Information specialists like the librarians are a key support group to provide better understanding and separation of useful from distracting information. Work, on all these stages must go on synchronously to produce the desired result.
HIFA Profile: Joseph Ana is the Lead Consultant and Trainer at the Africa Centre for Clinical Governance Research and Patient Safety in Calabar, Nigeria. In 2015 he won the NMA Award of Excellence for establishing 12-Pillar Clinical Governance, Quality and Safety initiative in Nigeria. He has been the pioneer Chairman of the Nigerian Medical Association (NMA) National Committee on Clinical Governance and Research since 2012. He is also Chairman of the Quality & Performance subcommittee of the Technical Working Group for the implementation of the Nigeria Health Act. He is a pioneer Trustee-Director of the NMF (Nigerian Medical Forum) which took the BMJ to West Africa in 1995. He is particularly interested in strengthening health systems for quality and safety in LMICs. He has written Five books on the 12-Pillar Clinical Governance for LMICs, including a TOOLS for Implementation. He established the Department of Clinical Governance, Servicom & e-health in the Cross River State Ministry of Health, Nigeria in 2007. Website: www.hriwestafrica.com Joseph is a member of the HIFA Steering Group and the HIFA working group on Community Health Workers.
Email: jneana AT yahoo.co.uk