This article is brought to you thanks to the collaboration ofThe European Stingwith theWorld Economic Forum.
Author: Habiba Al Alsafar, Associate Professor, Department of Biomedical Engineering, Khalifa University of Science, Technology and Research (KUSTAR) & Elizabeth ODay, Founder and Chief Executive Officer, Olaris Inc
Diagnosing diseases can be complex, because illness is not a fixed state and has to be considered in context. We may be born with factors that predispose us to disease, but our lifestyle dictates if and when undesirable symptoms will manifest themselves.
For example, our middle-eastern forefathers were relatively healthier than us because of a nomadic lifestyle which was considerably more active. Our genes have remained unchanged in our recent history, yet the prevalence of a number of lifestyle diseases such as diabetes and obesity has risen in contemporary middle eastern countries. This is in part due to a shift towards more sedentary lifestyles. The environment and our lifestyles are working in concert with inherent elements (that is, the products of our genome) to contribute to the status of our health.
The intersection of genetics and lifestyle choices is playing an increasingly significant role in managing the health of middle eastern populations. The prevalence of chronic disease, in particular diabetes and its associated complications, is alarmingly high throughout the Gulf States. According to the 2017 report from the International Diabetes Federation, 11% of the population in the Middle East and North Africa (MENA) region has diabetes. Disturbingly, the prevalence is higher in the population of countries like the United Arab Emirates (UAE), where 19.3% of those between the ages of 20 and 79 have type-2 diabetes. A number of major co-morbidities are linked to diabetes and of these, cardiovascular disease is the highest cause of mortality in the UAE, accounting for 40% of mortalities. Non-communicable diseases (NCDs) in total are responsible for 77% of all deaths in the UAE. Both men and women are dying prematurely, resulting in a profound impact on families specifically and the community on the whole. The impact is not only limiting progress and development of the nation, it has a bearing on government spending as treating end-stage disease carries significant costs.
To manage the health of a nation we must shift our attention to examine both genetics and the impact of lifestyle choices.
A recent audit of the worlds genomic data showed that the predominant genomes in public databases belong to Europeans (81%), while only 0.08% of the genome inventory represents ancestries from Arab and Middle Eastern populations. The genomes of people of Asian and African ancestries at 14% and 3% respectively were also relatively low.
A breakdown of non-European genomic data samples
As alluded to above, the genome is a key part of the puzzle that is required for understanding disease within a population. Efforts are clearly being made to increase our understanding of the genomes of people with middle eastern ancestries and the genomes from efforts in Kuwait, Qatar and the UAE are now available. It comes at a time when sequencing costs have plummeted and are no longer prohibitive. Innovation in genome sequencing technologies does not appear to be slowing, and continued reductions in the cost can be expected.
We have and continue to propose the need to develop collaborative linkages: locally, throughout the region and internationally. Collaboration needs to be encouraged and should involve all sectors of healthcare, including practicing physicians and paramedics, policy-makers and research scientists. It is only through coordinated efforts throughout the region that patients will ultimately be provided with the information that will enable individuals, and their care providers, to make informed decisions about their health and wellbeing. Importantly, strong local leadership is required, because as the Portuguese writer and Nobel laureate Jos Saramago put it: If you dont write your books, nobody else will do it for you. No one else has lived your life.
NCDs account for 77% of all deaths in UAE
The paradigm shift in healthcare that personalized or precision medicine customizing medical treatment to the individual characteristics, needs and preferences of a patient during all stages of care represents has been made possible through the availability of large datasets compiled by healthcare systems, technological advancements in next-generation genome sequencing and the development of proper analytical tools to identify relationships in vast datasets.
This is a systems biology approach that uses genome, phenome and microbiome data to quantify the wellness of an individual and to provide indicators of their impending disease state. The Pioneer 100 Wellness Project (P100) was a longitudinal study in the US designed to test this approach. It that was conceived on the rationale that as the scale of personal data increases with the convergence of advances in electronic health records sets, big data analysis, individual measurement devices, and consumer-activated social networks, it would be possible to define early warning signs for human diseases. Although the opportunities for observing health transitions in P100 were limited, the results were sufficiently compelling that it has justified refinements for an extended study involving a larger population of more than 100,000 individuals.
Health and healthcareHow is the World Economic Forum bringing data-driven healthcare to life?
The application of precision medicine to save and improve lives relies on good-quality, easily-accessible data on everything from our DNA to lifestyle and environmental factors. The opposite to a one-size-fits-all healthcare system, it has vast, untapped potential to transform the treatment and prediction of rare diseasesand disease in general.
But there is no global governance framework for such data and no common data portal. This is a problem that contributes to the premature deaths of hundreds of millions of rare-disease patients worldwide.
The World Economic Forums Breaking Barriers to Health Data Governance initiative is focused on creating, testing and growing a framework to support effective and responsible access across borders to sensitive health data for the treatment and diagnosis of rare diseases.
The data will be shared via a federated data system: a decentralized approach that allows different institutions to access each others data without that data ever leaving the organization it originated from. This is done via an application programming interface and strikes a balance between simply pooling data (posing security concerns) and limiting access completely.
The project is a collaboration between entities in the UK (Genomics England), Australia (Australian Genomics Health Alliance), Canada (Genomics4RD), and the US (Intermountain Healthcare).
Although currently viewed as a radical shift, preemptive measures have been proposed since the turn of the last century. In 1903, motivated by concerns about the healthcare of his time, Thomas Edison said: The doctor of the future will give no medicine, but will interest his patient in the care of the human frame, in diet and in the cause and prevention of disease. Through the more than 100 years since this statement, preventative strategies have taken hold in some areas of medicine (such as immunization), but there is more to do. In the words of the 11th century Persian physician and polymath Avicenna, There are no incurable diseases only the lack of will. There are no worthless herbs only the lack of knowledge. There is certainly no lack of will, and our knowledge is only expanding.
Therefore, the opportunity to apply personal medicine practices in the UAE to prevent or delay the onset of disease will have substantial social and economic impacts. The American physcian and systems biologist Dr Leroy Hood has predicted that the wellness and prevention market will outgrow the healthcare market, in part due to economic modelling which suggests that the reactive therapeutic route is unsustainable for ageing populations. The time to act is now.
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