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The NIH on accelerating research using diverse biomedical datasets

Martin Mendoza, PhD, director of health equity and health science policy for the All of Us Research Program
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Martin Mendoza, PhD, director of health equity and health science policy for the All of Us Research Program at the National Institutes of Health (NIH), tells pharmaphorum about the programme and how it will accelerate research for the benefit of all patients.

NIH’s All of Us is building an extensive, diverse biomedical dataset to learn how biology, lifestyle, and environment affect one’s health, and to accelerate research and improve personalised medicine options.

“The All of Us research program is an historic effort to partner with at least 1 million participants that reflect the diversity of the United States. We’re trying to achieve here, at least in a very direct manner, to build one of the largest, most diverse biomedical data resources of its kind,” Mendoza states.

This resource aims to improve precision medicine and drive research discoveries for all populations by including biomedical information from people often weary of providing such personal info.

Gathering data

The data collected is wide-ranging and includes a biosample (blood, urine, or saliva), electronic health records, physical measurements (height, weight, blood pressure, etc.), wearable data from a Fitbit or Apple Watch, and survey responses.

Currently, more than 350,000 participants have completed the initial or core steps of the programme.

About 50% of those participants self-identify as a racial or ethnic minority, and 80%, which includes the previous 50%, come from what the NIH terms a group underrepresented in biomedical research.

“This includes racial and ethnic minorities, sexual gender minorities, those who live in rural communities with disabilities, lower educational attainment, lower income, those with low access to health care and other underrepresented groups,” Mendoza states.

This diverse cohort is crucial because medicine and research have often taken a one-size-fits-all approach, and many medical innovations developed over the last several decades have been based on research that excludes marginalized populations.

“That lack of diversity can inhibit scientific discovery, especially for those from underrepresented communities. When that happens, those that aren’t included don’t reap the benefits of the research advances of those medical breakthroughs,” Mendoza states.

“What we’re really trying to do is drive discoveries that can lead to more tailored prevention, diagnosis, and treatment for all individuals. We’re doing this by engaging these diverse participants and encouraging diverse researchers across various settings. We want to tackle this from both the researcher’s and participant’s ends. This dual approach will lead to better medical research that will benefit all populations.”

Many of the populations All of Us seeks to engage have been weary of providing such personal datasets to medical research institutions.

To engage these communities, Mendoza states that the program partners with a wide range of trusted community organisations, such as medical centres, academic institutions, nonprofit groups, and faith-based organisations.

All of Us also doesn’t shy away from acknowledging past transgressions in medical research, like the Tuskegee Experiment or Henrietta Lacks.

“These events understandably have fostered justified mistrust among many of these communities. To build trust, we not only partner with […] trusted organisations, but we consider our participants as partners. In fact, we call them participant partners, and they help shape nearly every aspect of the programme,” Mendoza states.

The groups participate in specified meetings with All of Us and are routinely asked for their input.

“Really, without their contributions and the ongoing engagement of our participant ambassadors, the programme would not be able to facilitate meaningful research,” Mendoza states.

Another path All of Us takes to engage participants is its mobile bus, which it internally calls a Mobile Engagement Asset (MEA).

The MEA has recently restarted its travels across the US, going coast-to-coast and visiting particular communities that aren’t as connected to one of NIH’s enrolment centres.

“In partnership with local organisations, the bus is parked at strategic locations for several days to provide information about the programme. Potential participants can go through the full enrolment process at the mobile unit. This is all part of our strategy to really meet people where they are,” Mendoza states.

The All of Us team is engaging these diverse communities to gather these datasets because it aims to use this information to impact clinical research.

Utilising the data

The datasets accelerate research primarily by acting as a resource to researchers, Mendoza says. More than 2,000 research projects are underway using All of Us‘ datasets, and more are added daily.

“It’s really the work of researchers that will help us improve the understanding of health and a wide range of diseases,” Mendoza states.

“For example, in early 2020, we enrolled somewhere between 3,000 to 3,500 participants each week. In March 2020, when the pandemic hit, we had to pause in-person recruitment. But that also provided us with an unexpected finding.”

All of Us researchers tested participants’ blood samples donated between January and March of 2020 and found that COVID-19 was present in five US states – earlier than scientists initially thought.

While All of Us wasn’t set up to study COVID-19 specifically, the scale and diversity in the multiple data types, the biosamples, and the longitudinal design enabled researchers to leverage the datasets.

“It shows the power of the All of Us data set and the potential to use it for research and ideas that folks had never even thought of. All of Us is designed as this long-term programme that will continue to build and deliver insights as the programme grows,” Mendoza states.

“As we continue to build this robust foundation for medical research, we’re hoping it can ultimately help deliver tailored or precision treatments and care, not just for some groups, but really for all groups; for all of us, if you will.”

There’s a great deal of momentum in the healthcare community, including the pharmaceutical sector, to increase personalised care options using data.

Minor variations in one’s genetic makeup can impact individual responses to medication. Understanding these differences across diverse populations can help doctors and HCPs determine what medication and dosage best fit a patient.

“Pharmaceutical companies certainly stand to gain by advancing precision medicine, understanding how an individual’s genetic and biological makeup will react to a medication. So, collecting data from a large, diverse population nationwide with a range of health experiences provides a resource for scientists to understand those response differences in advance better, to provide individualised care for everyone,” Mendoza states.

“I would encourage the current efforts underway by the private sector, including the pharmaceutical industry, to continue their efforts to diversify their clinical trials and by doing so, that will help to develop medical products that work for everybody.”

All of Us is currently looking at ways to share its data with the for-profit sector.

“We’re really hoping that All of Us will have a formidable role in making precision medicine a routine practice. And ultimately, we’re really hoping All of Us becomes an indispensable resource to the research community,” Mendoza states.

About the interviewee

Martin Mendoza, PhD, serves as the director of health equity and health science policy for the All of Us Research Program, where he provides leadership and high-level expertise to improve inclusion and equity in precision medicine and address health equity issues for the programme. Before joining All of Us, Martin served as director of the Division of Policy and Data at the Office of Minority Health in the Office of the Secretary at the U.S. Department of Health and Human Services, charged with developing health policies and initiatives to eliminate health disparities and advance health equity. Previously, he led extramural research for minority health in the Office of the Commissioner at the U.S. Food and Drug Administration (FDA). He is a recognised expert in clinical trial diversity and while at the FDA testified before Congress in support of diverse clinical research inclusion. Martin is also the primary author of the pivotal FDA guidance document Collection of Race and Ethnicity Data in Clinical Trials.

About the author

Jessica Hagen is a freelance life sciences and health writer and project manager who has worked with medical XR companies, fiction/nonfiction authors, nonprofit and for-profit organisations, and government entities.

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First-ever social responsibility report of Chinese enterprises in Saudi Arabia incorporates BGI Genomics projects

On December 1, 2022, the Social Responsibility Report of Chinese Companies in Saudi Arabia was officially launched, which is the first such report released…

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On December 1, 2022, the Social Responsibility Report of Chinese Companies in Saudi Arabia was officially launched, which is the first such report released by the Contact Office of Chinese Companies in Saudi Arabia. BGI Genomics projects in the Kingdom have been incorporated into this report.

Credit: BGI Genomics

On December 1, 2022, the Social Responsibility Report of Chinese Companies in Saudi Arabia was officially launched, which is the first such report released by the Contact Office of Chinese Companies in Saudi Arabia. BGI Genomics projects in the Kingdom have been incorporated into this report.

This event was attended by around 150 representatives of Chinese and Saudi enterprises, Saudi government officials, experts in the field of sustainable development, CCTV, Xinhua News Agency, Saudi Press Agency, Arab News and other media professionals. This Report presents the key projects and best practices of Chinese enterprises to fulfil their social and environmental responsibilities while advancing the Kingdom’s industry development.

Chen Weiqing, the Chinese ambassador to Saudi Arabia, said in his video speech that the Report highlighted Chinese enterprises’ best practices in serving the local community, safe production, green and low-carbon development and promoting local employment. The release of the Report helps Chinese enterprises in the Kingdom to strengthen communication with the local community, laying a stronger foundation for future collaboration.

Epidemic control and accelerating post-COVID 19 recovery

BGI Genomics has been fulfilling its corporate social responsibilities and worked with the Saudi people to fight the COVID-19 epidemic.

In March 2020, Saudi Arabia was hit by the pandemic. The Saudi government decided to adopt BGI Genomics’ Huo-Yan laboratory solution in April 2020. At the forefront of the fight against the epidemic, the company has built six laboratories in Riyadh, Makkah, Madinah, Dammam and Asir within two months, with a total area of nearly 5,000 square meters and a maximum daily testing throughput of 50,000 samples.

By the end of December 2021, BGI Genomics had sent 14 groups of experts, engineers and laboratory technicians to Saudi Arabia, amounting to over 700 people, and tested more than 16 million virus samples, accounting for more than half of the tests conducted during this period. The company has successfully trained over 400 qualified Saudi technicians, and all laboratories have been transferred to local authorities for the operation.

In the post-epidemic era, the Huo-Yan laboratories can continue to make positive contributions to public health, working with local medical institutions and the public health system to make breakthroughs in areas such as reproductive health, tumour prevention and control, and prevention.

Enhancing genomic technology localization and testing capabilities

In July 2022, BGI Almanahil and Tibbiyah Holdings, a wholly owned subsidiary of the Saudi Faisaliah Group, announced a joint venture (JV) to establish an integrated, trans-omics medical testing company specializing in genetic testing.

This JV company will help improve Saudi Arabia’s local clinical and public health testing and manufacturing capabilities, promote the localization of strategic products that have long been imported, contribute to the implementation and realization of the Kingdom’s Vision 2030 roadmap, and significantly enhance local capacity for third-party medical testing services as well as local production of critical medical supplies.

BGI Genomics attaches great importance to fulfilling its corporate social responsibility and has released its social responsibility report for four consecutive years since 2017. Since its establishment, the company has always been guided by the goal of enhancing health outcomes for all, relying on its autonomous multi-omics platform to accelerate technological innovation, promote reproductive health, strengthen tumour prevention and control, and accurately cure infections, and is committed to becoming a global leader in precision medicine and covering the entire public health industry chain.

The company will continue to work together with all stakeholders to contribute to the Kingdom’s Vision 2030 and the Belt and Road Initiative and looks forward to growing with our partners.

 

About BGI Genomics

BGI Genomics, headquartered in Shenzhen China, is the world’s leading integrated solutions provider of precision medicine. Our services cover over 100 countries and regions, involving more than 2,300 medical institutions. In July 2017, as a subsidiary of BGI Group, BGI Genomics (300676.SZ) was officially listed on the Shenzhen Stock Exchange.

 


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Alcohol deaths in the UK rose to record level in 2021

Nearly 10,000 people died from alcohol in 2021.

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Deaths from alcohol in the UK have risen to their highest level since records began in 2001, according to the latest data from the Office for National Statistics (ONS). In 2021, 9,641 people (14.8 per 100,000) died as a result of alcohol: a rise of 7.4% from 2020.

The leading cause of alcohol-specific deaths (deaths caused by diseases known to be a direct consequence of alcohol) continues to be liver disease. More than three-quarters (78%) of all alcohol deaths in 2021 were attributed to this cause. The remainder of the deaths were due to “mental and behavioural disorders because of the use of alcohol” and “accidental poisoning by, and exposure to, alcohol”.

Although there is no such thing as a safe level of drinking, and many people would feel the health benefits of reducing consumption, most of the risks of developing health problems and dying are skewed towards those who drink the most.

Between 2012 and 2019 alcohol-specific deaths remained relatively stable. It is no coincidence that deaths rose sharply during the first two years of the pandemic: those that were already drinking at harmful levels increased their consumption further during this period. Although liver disease can take years to develop, this process is accelerated when those drinking at harmful levels increase their consumption further.

Other statistics show that unplanned alcohol-related hospital admissions decreased during this period, which may have meant missed opportunities to provide help for those people experiencing problems with alcohol.

Looking beyond the headline figures, there are important differences in various groups within the population. Alcohol-specific deaths were not spread equally. For example, men were twice as likely to die as women. In 2021, 20.1 men per 100,000 died compared with 9.9 women.

Where you live in the UK matters, too, as deaths in Scotland are the highest, followed by Northern Ireland, Wales then and England – although the gap between the nations seems to be narrowing.

In England, deaths are highest in the north-east of England (20.4 per 100,000), which is twice as high as those in London (10.2 per 100,000). Although rates have increased in all regions; for example, there was a rise of 38% in south-west England from 2019 to 2021. This reflects what is already known about the relationship between deprivation and harm from alcohol. There is a two to fivefold higher risk of dying among lower-income groups compared with those from the higher-income groups.

Reflecting the growing trend of young people drinking less than older age groups, it is those aged 50 to 64 that account for most deaths due to liver disease. In 2021, for example, 39 people aged 25 to 29 died from alcohol-related liver disease, compared with 1,326 of those aged 50 to 59. This is related to a greater number of years of drinking but is also a general reflection that when older adults were younger, they tended to drink more than younger people do now.

Numbers of alcohol-specific deaths, by five-year age group and individual cause. Office for National Statistics – Alcohol-specific deaths in the UK: registered in 2021, National Records of Scotland and the Northern Ireland Statistics and Research Agency

Addressing harms

So what can be done to begin to address alcohol harms? It has been estimated that almost a quarter of drinkers in the UK drink above the recommended low-risk drinking guidelines. So this is a health and social issue that requires a national response. Low-impact initiatives, such as education and awareness raising, may not be enough.

The costs of alcohol to society are significant. A recent review estimated this to be £27 billion annually, with only half of this offset by tax revenue on alcohol products.

Timely access to specialist treatment can help to reduce the health risks associated with alcohol. Unfortunately, there have been significant cuts to funding for this type of intervention.

Around 80% of people classed as dependent on alcohol in England are not currently getting treatment support. While there has recently been extra funding for drug services to try and correct historic cuts, this has not been extended to alcohol. Reversing this by investing in services could help to reduce the rising number dying prematurely from alcohol.

A new strategy is long overdue

The last government strategy for alcohol was published in 2012, so there is a pressing need for a new one. This must address all the ways that the harms from alcohol can be tackled, from marketing and pricing to specialist treatment and recovery services.

A group, led by Liverpool MP Dan Carden, with cross-party support, recently called on the government to initiate an independent review of alcohol harm, along the lines of the review led by Dame Carol Black, which had a significant influence on drug policy and treatment funding.

Without such a review and strategy based on it, the harms caused by alcohol including premature death will continue to rise year after year. So much has changed since the last alcohol strategy in 2012 not least the current cost of living crisis. The outlook for investment in public health looks bleak, added to which this government doesn’t seem willing to curtail the efforts of the alcohol industry in marketing and protecting its products.

Harry Sumnall receives and has received funding from grant awarding bodies for alcohol and other drug research. He sits on grant-awarding funding panels, and is an unpaid scientific adviser to the MIND Foundation.

Ian Hamilton does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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Alcohol deaths in the UK rose to record levels in 2021

Nearly 10,000 people died from alcohol in 2021.

Published

on

By

There has been a record rise in deaths from alcohol in the UK, according to the latest data from the Office for National Statistics (ONS). In 2021, 9,641 people died as a result of alcohol: a rise of 7.4% from 2020.

The leading cause of alcohol-specific deaths (deaths caused by diseases known to be a direct consequence of alcohol) continues to be liver disease. More than three-quarters (78%) of all alcohol deaths in 2021 were attributed to this cause. The remainder of the deaths were due to “mental and behavioural disorders because of the use of alcohol” and “accidental poisoning by, and exposure to, alcohol”.

Although there is no such thing as a safe level of drinking, and many people would feel the health benefits of reducing consumption, most of the risks of developing health problems and dying are skewed towards those who drink the most.

Between 2012 and 2019 alcohol-specific deaths remained relatively stable. It is no coincidence that deaths rose sharply during the first two years of the pandemic: those that were already drinking at harmful levels increased their consumption further during this period. Although liver disease can take years to develop, this process is accelerated when those drinking at harmful levels increase their consumption further.

Other statistics show that unplanned alcohol-related hospital admissions decreased during this period, which may have meant missed opportunities to provide help for those people experiencing problems with alcohol.

Looking beyond the headline figures, there are important differences in various groups within the population. Alcohol-specific deaths were not spread equally. For example, men were twice as likely to die as women. In 2021, 20.1 men per 100,000 died compared with 9.9 women.

Where you live in the UK matters, too, as deaths in Scotland are the highest, followed by Northern Ireland, Wales then and England – although the gap between the nations seems to be narrowing.

In England, deaths are highest in the north-east of England (20.4 per 100,000), which is twice as high as those in London (10.2 per 100,000). Although rates have increased in all regions; for example, there was a rise of 38% in south-west England from 2019 to 2021. This reflects what is already known about the relationship between deprivation and harm from alcohol. There is a two to fivefold higher risk of dying among lower-income groups compared with those from the higher-income groups.

Reflecting the growing trend of young people drinking less than older age groups, it is those aged 50 to 64 that account for most deaths due to liver disease. In 2021, for example, 39 people aged 25 to 29 died from alcohol-related liver disease, compared with 1,326 of those aged 50 to 59. This is related to a greater number of years of drinking but is also a general reflection that when older adults were younger, they tended to drink more than younger people do now.

Numbers of alcohol-specific deaths, by five-year age group and individual cause. Office for National Statistics – Alcohol-specific deaths in the UK: registered in 2021, National Records of Scotland and the Northern Ireland Statistics and Research Agency

Addressing harms

So what can be done to begin to address alcohol harms? It has been estimated that almost a quarter of drinkers in the UK drink above the recommended low-risk drinking guidelines. So this is a health and social issue that requires a national response. Low-impact initiatives, such as education and awareness raising, may not be enough.

The costs of alcohol to society are significant. A recent review estimated this to be £27 billion annually, with only half of this offset by tax revenue on alcohol products.

Timely access to specialist treatment can help to reduce the health risks associated with alcohol. Unfortunately, there have been significant cuts to funding for this type of intervention.

Around 80% of people classed as dependent on alcohol in England are not currently getting treatment support. While there has recently been extra funding for drug services to try and correct historic cuts, this has not been extended to alcohol. Reversing this by investing in services could help to reduce the rising number dying prematurely from alcohol.

A new strategy is long overdue

The last government strategy for alcohol was published in 2012, so there is a pressing need for a new one. This must address all the ways that the harms from alcohol can be tackled, from marketing and pricing to specialist treatment and recovery services.

A group, led by Liverpool MP Dan Carden, with cross-party support, recently called on the government to initiate an independent review of alcohol harm, along the lines of the review led by Dame Carol Black, which had a significant influence on drug policy and treatment funding.

Without such a review and strategy based on it, the harms caused by alcohol including premature death will continue to rise year after year. So much has changed since the last alcohol strategy in 2012 not least the current cost of living crisis. The outlook for investment in public health looks bleak, added to which this government doesn’t seem willing to curtail the efforts of the alcohol industry in marketing and protecting its products.

Harry Sumnall receives and has received funding from grant awarding bodies for alcohol and other drug research. He sits on grant-awarding funding panels, and is an unpaid scientific adviser to the MIND Foundation.

Ian Hamilton does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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