Equitably Harnessing the Power of Health Data - Time for Action and Collaboration March 2021 - ICODA COVID
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Equitably Harnessing the Power of Health Data Time for Action and Collaboration March 2021
Welcome
Dr Michael Makanga
2
From the following list, please select the most frequent
barrier researchers may encounter in your setting that
prevent them from doing their own research?
• Lack of training and/or experience
• Lack of access to health research literature
• Lack of resources (financial, human or infrastructure) to support data management
• Limited collaboration or isolation
• All of the above
• Other
3
@ICODA_research @info_TGHN #CUGH2021
International COVID-19 Data Alliance (ICODA)
ICODA is an open and inclusive global collaboration of leading life science, philanthropic and research organisations that
have come together to harness the power of health data to respond to the COVID-19 pandemic. ICODA is convened by
Health Data Research UK, the national institute for health data in the UK.
VISION MISSION
To unite international health To build an open international
research data to enable discoveries partnership that demonstrates
that benefit everyone, everywhere, trustworthiness to support a rapid
by reducing the harm of COVID-19; response to COVID-19 and a long-
and enable an efficient data term alliance for making data
response to future pandemics and accessible to researchers and
other health challenges. scientists around the world.
Launched 6th July 2020
4
@ICODA_research @info_TGHN #CUGH2021
Our aim is to accelerate discovery by improving access to
data
Collaborative • Inclusivity: working in partnership with academia, industry, health systems
Alliance • Learning: bring together existing initiatives to ensure a coordinated response
• Public involvement: community engagement to build confidence
Trustworthy
• Information Governance: based on the ‘5 safes’ framework (safe data, safe projects, safe
Ecosystem
people, safe settings, safe outputs)
Global • International: reciprocity between data contributors and data analysts
Representation • LMIC focus: researchers and stakeholders from low and middle-income countries
Enable Scale • Infrastructure: sustainability, inter-operability, security, scalability, reliability
and Longevity • Harmonisation: reduce complexity of data sharing to accelerate high-quality research
Driver Project • Research question led: delivering health impact through tangible examples
Delivery Model • Iterative Build: test platform, processes and tools to ensure smooth scale-out
5
@ICODA_research @info_TGHN #CUGH2021
6 @ICODA_research @info_TGHN #CUGH2021
Setting out the challenge
Dr Aliya Naheed
7
Deep-Dive into 4 Case Studies
Lessons learned pre-COVID
Dr David Mukanga
8
Power of data for Bangladesh
Equitably Harnessing the
Power of Health Data
Time for Action and
Collaboration
CUGH 2021 Virtual Session
1 March 2021
9am-12pm CT / 3pm-6pm UTC
Aliya Naheed MBBS (DU), MPH (JHU), PhD (TU), Post doc (MU)
Head, Initiative for Noncommunicable Diseases,
Health Systems and Population Studies Division, icddr,b
Solving public health problems through innovative scientific research www.icddrb.org
Bangladesh at a glance (2020)
• Area: 147,570 sq. km
• Population: 165 million
• Population Density: 1,252
persons per sq. km
• Urban population: 34.3%
• Total health expenditure (THE) :
3.5 % of GDP
• Per capita THE: US$27
• 63% of THE is out of pocketElderly population increases from 6.5% of pop.
in 2011 to 8.2% of pop. in 2021
9.8 million 2011 14 million 2021
Source: PopulationPyramid.netHealth of older people in Bangladesh
34% Multimorbidity in older age
people
No morbidity 1 (Any morbidity) ≥2 morbidity
18.7%
34.1% Nationwide survey among older age people
• 57% older • 93% sought
adults health care
suffered in from different
last 6 month providers
47.2% Physical Physical
illness health care
Multimorbidity : Diabetes, Hypertension, Depression and Dementia * Source: Naheed A et al. (2020) unpublished data~ 40% can support treatment for themselves
100.0%
Financial resource of treatment
80.0%
60.0% 56.1%
38.5%
40.0%
20.0% 10.1%
0.0%
Children savings/earning Self saving/earning Wife/husband
savings/earning
•29% is involved
100
Overall quality of life is poor
EQ5D (Mean VAS score)
80
in an occupation 60
58 61
55
(wage earners) 40
20
0
Overall Male FemaleNoncommunicable diseases (NCDs) account for
67% of annual deaths in Bangladesh
NCD risk factors NCD risk factors
Age:25-64y Age:65+y
( 42.46% of total pop.) (4.24% of total pop.)
• Fruits/Vegetables (3 serving):5.6% • Fruits/Vegetables (3 serving):6.5%
• Physical inactivity:22.2% • Physical inactivity:11.1%
• Overweight/obese:8.5% • Overweight/obese:20%
• Raised blood pressure: 23% • Raised blood pressure: 41%
• Diabetes: 3.2% • Diabetes: 9%
Source: WHO STEPwise survey in Bangladesh 201030 years projection of the population
Dynamics
Year:2021 Year:2050
• Population:168.7 million • Population:201.3 million
Year:2050
Year:2021
• Elderly 21.9% of total
• Elderly 8% of total pop. pop.
Year:2050
Year:2021
• Life expectancy
• Life expectancy
• M:77.8 & F : 80.0 y
• M: 71.6 & F: 73.9 y
Year:2050
Year:2021
• Age dependency ratio
• Age dependency ratio
• (Age 65+ / 15-64) :23.5
• (Age 65+ / 15-64) :7.7In 2050 the older age population (≥60 y) will be
more than eleven times than the under fifteen
population (0-14 y)
Kabir, Russell, et al. "Population ageing in Bangladesh and its implication on health care." European Scientific Journal 9.33 (2013): 34-
47.Bangladesh needs rapid solution
Data is power for searching solutions
HelpAge InternationalHealth Impact of bad The future
resource health on Bangladesh if
mobilization in economy and we DO NOT
substantial in progress take necessary
both groups measures at all
level at one
time
• Supporting health
care at all age
(preventive, Holistic health
primary, tertiary, • Multisectoral
service approaches for
rehabilitative) approaches sustainability of
health benefit
Comprehensive • Holistic health care (financing)
primary and approach through Systems
secondary care all spectrums of approaches
linked to tertiary disease conditions beyond health
care approaches (mild to severe)
Life cycle approaches for the prevention and
control of NCDs in BangladeshHealth and Demographic Surveillance System (HDSS)
Existing HDSS of icddr, b
Matlab health and demographic surveillance system Chakaria health and demographic surveillance system
We need comprehensive health data
Representative
HDSS
Evidence based Easy access to Routine data
Current need
clinical practice data generation
Capable
workforceNational Micronutrient Survey in Bangladesh 2019-2020
(national level infrastructure for generating health data)
8 Divisions
64 districts
Blood sample collected from 2000
households
250 clusters
~50,000
Households
Hard to reach areasThe greatest challenges for NCD Doctors, nurses
care in Bangladesh: Shortage in and midwives:
health workforce 2.28 per 1000
population
Health Care
Facility
Number of bed in
hospitals (4 per
10,000)
Government Private
612 9061
484 4280
Government Private diagnostic
Upazila hospitals Private hospitals
hospitals Center
Ref. WHOPeace time data and real time analysis could support rapid situation assessment and planning rapid response to health emergencies • Hospital • Build research • Obtain routine • Future data infrastructure data for policy planning for • Community • Develop planning tackling health based data capable work • Track data to and diseases in • Special force to obtain detect the LMICs population data emergencies Research Research Peace time Regional facility infrastructure data soluiton
Clinical Research Platform, Bangladesh
icddr,b signs a MoU with the premier post graduate teaching medical
university in Bangladesh and the British Medical JournalGoal of CRPlatform Bangladesh
To develop a standardized common set for clinical research
Encourage clinicians to join public health experts to conduct Expose the local researchers
high quality research in Bangladesh to seminal works
Dissemination of scientific
Establish a broader network for To establish a consortium of
outputs of the clinicians and
enhancing collaborations experts of NCD researcher
researchers
Achievements of
Hospital Utilization of Opportunity
CRPlatform Hand on
network available data of
training
Bangladesh development dissemination
Grant writing (19), 200 abstracts
9 National and 2 Collaboration with
Protocol writing published in 1st
international clinicians of 22
(6),Manuscript Scientific Congress
training hospitals
published (14) on NCDRevitalization of clinical research platform, Bangladesh for
promoting clinical research
Identify the Output
challenges and
opportunities
for conducting
research Identify solution
Real time Permanent Translate research
evidence on training
health and platform for into policy
disseminate building
before local research
stakeholders capacity
Strengthening of
health system
Create data
registry for
patient with
COVID-19 and
Improve quality of
other health care
related issuesStrengThening & Accelerating the Global Research RespoNse to COVID-
19 by Sharing Methods and Knowledge Between Countries, NEtworks
and Organizations (STAND by ME)
• To revitalize clinical
research platform,
Goal 1 Bangladesh for
promoting clinical
research
• To establish the Asian
Knowledge Hub for a
Goal 2 wider dissemination of
COVID-19 and other
health data in AsiaEstablish an Asian network
Establish a
knowledge hub Output
for Asia for •Identify champions
•Conduct analysis of sharing •Brainstorming meeting
available data research
•Online survey Identify common health issue
•Organize Webinars to experience on
disseminate evidence
COVID-19 related to COVID-19 and others
Develop a Develop
platform for generic
dissemination protocol for Identify common solution
of country level Asian
up-to-date Knowledge
data Hub
Identify cost effective
•Brainstorming intervention for rapid
workshops implementation in the Asian
Create a • Generate a data region
common data repository
repository for
Asia
•Involve the local Improve quality of care
research hubSustainable Development Goal 3:
Ensure healthy lives and promote well-being for all
at all ages
https://www.un.org/development/desa/disabilities/THANK YOU
Equitable research in Brazil:
challenges and opportunities
Luiza Lourenço, Ph.D.
Brazil Regional CoordinatorHEALTH RESEARCH
ü High-quality
ü Relevant
What should be the
focus?PEOPLE PEOPLE
contributing data How to
generating data
bring eq
to who uity
benefit
who is s
contrib ,
and has uting
a
health r ccess to
esearch
and
data?The Fiocruz experience
ü Community engagement
ü Biorepository
ü Open Science
ü New platform for data sharing2019
Workshop Series
Physiotherapist Medic Pharmacist
5% 3% 3%
Undergraduate
Endemic disease student Before
control agent 25% Formulate a clear
After research question
5% 8.5
8
Public health 7.5 Choose the best
Identify each of the
system user members of the 7
research
5% methodology that will
research team and 6.5 answer your research
Academic their roles
questi on
6
20%
Other
7% Design the best
Select the best data
community
management strategy
engagement strategy
for your research
Nurse Graduate for your research
study
11% study
students
ü 239 participants in total
ü 33,1 had no previous research
experience
ü 51,9% looking for career
development opportunitiesü Full knowledge cycle
Zika Findings Project
ü Artificial intelligence
ü Open and free to all
COMMUNITY RESEARCHERS
POLICYMAKERSThank you!
The world in a COVID-19 era
Moving forward – strategic
global alliances
Dr Michael Makanga
37From the list, please select which you believe to be the
greatest hurdle when sharing research data with other
researchers?
• Lack of infrastructure
• Lack of data management personnel
• Lack of incentive to share
• Governance issues
• Concerns that recognition will not be given to the researchers who generated the data in the first
place
• Other
• All of the above
38
@ICODA_research @info_TGHN #CUGH2021Enabling
research
Collaborative Alliance
With Many Global
Partners GLOBAL
HEALTH
IMPACT
FAIR
Trustworthy data Technical
stewardship Capability
Enabling better and easier research and data analysis to
accelerate discovery that improves
@ICODA_research @info_TGHNglobal health
#CUGH2021
39Thank you for joining us
You can contact us at:
www.ICODA-research.org.uk or www.tghn.org
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