London Life Sciences Population Study
Imperial College London · Academic
In term In term in the September 2026 edition: the latest version runs to 13 July 2028.
- Reference
- DARS-NIC-719923-Q5H1S
- Current version
- v2.2
- Term of current version
- 30 January 2026 to 13 July 2028
- Start date
- 4 April 2025
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 183
Why the data was released
Objective for processing
Imperial College London requires access to NHS England data for the purpose of the following research project:
London Life Sciences Population (LOLIPOP)
The following is a summary of the aims of the research project provided by Imperial College London:
LOLIPOP was established to understand the significant health disparities faced by South Asians, including approximately double the risk of coronary heart disease (CHD) and triple the risk of type-2 diabetes, compared to the European population. LOLIPOP is a national study, and the data requested reflects the geographical diversity of the cohort, which includes participants recruited from across the UK. This breadth of data is essential for assessing health outcomes across different regional and environmental contexts
LOLIPOP 2003, is a cohort of ~32,000 participants (including 17,606 UK South Asians) aged 35-75 years, recruited from the lists of 58 GPs in NW London (2003-8), and followed up for ~20 years.
LOLIPOP 2020, is currently a cohort of, ~53,000 UK South Asians, aged 18-85 years, recruited from the lists of GP across UK (2020-2024).
The recruitment phase for the LOLIPOP study's initial cohort, LOLIPOP 2003, was completed in 2008, and baseline data collection for the LOLIPOP 2020 cohort was completed in 2024.
LOLIPOP aims to investigate genetic, environmental, and lifestyle factors underlying high rates of CHD, type-2 diabetes, and other chronic diseases (including cancer, cognitive impairment, neuropsychiatric conditions, and neurodegenerative effects), within the context of complex interactions among genetic predispositions and lifestyle or environmental exposures, providing a comprehensive understanding of the unique health challenges faced by the South Asian population.
LOLIPOP is a unique scientific resource and one of the largest prospective studies globally, focusing on health outcomes in South Asians and addressing critical public health needs in this population. The data requested will be used to provide a comprehensive set of outcomes to understand the health risks specific to South Asians, a group at increased risk of CHD, diabetes, and related conditions
The following NHS England Data will be accessed:
Hospital Episode Statistics
o Admitted Patient Care, Accident & Emergency. Critical Care, Outpatients, Emergency Care Data Set (ECDS) – necessary to evaluate records of hospital attendances and admissions for all conditions, allowing for a broad analysis of cardiometabolic and other health outcomes.
HES data provides a more comprehensive medical history, giving information on underlying conditions and treatments. LOLIPOP requires HES data linked to cohort participants for all requested years to perform statistical analyses to investigate whether associations exist between genetic, lifestyle, and environmental factors and adverse health outcomes, such as cardiovascular disease, stroke, and diabetes to explore the implications of these exposures on wider health outcomes within the South Asian population.
• Civil Registration Mortality – necessary to evaluate cause-specific mortality in cancers and other chronic diseases in relation to genetic, lifestyle, and environmental exposures. Additionally, if a participant passes away during the study, it is essential that the study is notified of this to ensure that the participant’s family is not contacted regarding study developments
• Cancer Registration – necessary for any cancers participants have been diagnosed with, enabling analysis of cancer incidence and risk factors.
• Demographics – necessary to obtain updates to participant demographics, postal addresses, and registered GP practices to support accurate follow-up and minimise loss-to-follow-up bias. LOLIPOP periodically re-contacts participants for follow-up questionnaires and health screenings, and it is important to have correct and up-to-date contact details, particularly for participants without valid postal or email addresses. Although LOLIPOP encourages participants to inform the study team when they move, this is not a failsafe method for ensuring accuracy.
LOLIPOP requires long-term prospective follow-up of the health of the cohorts. Previous studies investigating potential causal factors in South Asians have been hampered by small sample sizes, a lack of longitudinal data, limited phenotyping, and a reduced ability to draw directional or causal inferences
The level of the Data will be Identifiable – necessary because LOLIPOP periodically re-contacts participants for follow-up questionnaires and health screenings, and it is important to have correct and up-to-date contact details, particularly for participants without valid postal or email addresses. Although LOLIPOP encourages participants to inform the study team when they move, this is not a failsafe method for ensuring accuracy
The Data will be minimised as follows:
• Limited to a study cohort identified by Imperial College London – those participants who have consented to the linkage of their health data
• Limited to a cohort of 100,00 aged ranges from 18-85 years
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by Wellcome Trust. The funding is specifically for the Longitudinal Population Studies, ‘South Asia Biobank’ described.
The funder will have no ability to suppress or otherwise limit the publication of findings.
Imperial College London Certified Secure Research Environment (CSRE) is an isolated environment within the Imperial College network, physically located at a Slough data centre operated by Virtus SDC Ltd.
LOLIPOP Scientific Advisory Group: The Scientific Advisory Group (SAG) for the LOLIPOP study is established and provides expert guidance on the study’s overall strategy, scientific direction, and ongoing oversight. The SAG advises the Principal Investigators, research team, and senior academic partners, ensuring that the research aligns with current scientific standards and public health priorities. The group is composed of senior-level experts across key disciplines, including cardiovascular and metabolic health, epidemiology, genetic research, and biostatistics, whose expertise is critical to achieving the study’s objectives.
LOLIPOP Participant Advisory Group: The Participant Advisory Group (PAG) plays a critical role in ensuring that participant perspectives are actively incorporated into the LOLIPOP study’s research process. The PAG works to prioritise research questions that matter most to South Asian communities. PAG facilitates culturally sensitive discussions around topics like consent, genetic testing and health needs.
Data will be accessed by:
· A PhD student enrolled with Imperial College London. The individual has completed mandatory data protection and confidentiality training and is subject to Imperial College London policies on data protection and confidentiality. The individual accessing the data will do so under the supervision of a substantive employee of Imperial College London. Imperial College London would be responsible and liable for any work carried out by the individual. The PhD student would only work on the data for the purposes described in this Data Sharing Agreement (DSA).
The data will be used as part of the PhD research project, of which is fundamentally made on behalf of the wider LOLIPOP study. The PhD project represents one specific use case embedded within a broader, long-term research programme focused on understanding the genetic, environmental, and lifestyle determinants of cardiometabolic disease in South Asian populations.
Data will be accessed by:
• Individuals holding an honorary contract under the supervision of a substantive employee of Imperial College London for the purposes described in this DSA only. Imperial College London must maintain records in a single location that cover the following details of each individual given access under an honorary contract:
o Their substantive employer;
o Their role in respect of the purpose for the processing specified in the DSA;
o The start date and end date of the duration in which the Data will be accessed by the individual under an honorary contract;
o The necessity for the Data to be accessed by the person(s) holding an honorary contract, instead of a substantive employee of an organisation named as controller or a processor in this DSA;
o Confirmation that an appropriate contract is in place which follows the relevant guidance and is countersigned by the substantive employer of the honorary contract holder.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group strongly supported the collection of the data for the purposes described above.
The LOLIPOP study builds on ~20 years of trusted partnerships within UK South Asian communities.
Participants and advocacy groups engage in community workshops, seminars, conferences.
Both the SAG and PAG play pivotal roles in connecting community voices to the scientific framework, ensuring that the study remains participant-focused while adhering to the highest standards of scientific rigor. This dual approach integrates the perspectives of both experts and community stakeholders, fostering a research environment that is ethical, impactful, and culturally sensitive
Processing activities
Imperial College London will transfer data to NHS England. The data will consist of identifying details, Date of Birth, Postcode, Gender, Name, NHS Number and a unique person ID for the cohort to be linked with NHS England data.
NHS England will provide the relevant records from the HES Admitted Patient Care, Accident & Emergency, Emergency Care Data, Outpatient, Critical Care, Demographics, Deaths and Cancer Registration Datasets to Imperial College London.
The Data will:
· contain directly identifying data items including Names, NHS Number, Date of Birth, Postcode, which are required to link the Data at record level with data already held by the recipient.
The Data will not be transferred to any other location.
The Data will be stored on servers at The Imperial College London Certified Secure Research Environment. The CSRE is an isolated environment within the Imperial College network, physically located at a Slough data centre operated by Virtus SDC Ltd.
Virtus SDC Ltd do not have access to the data stored within the CSRE. Their role is strictly limited to providing the physical location and infrastructure for the servers.
The Data will be accessed by authorised personnel via remote access.
The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.
For remote access:
- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.
The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).
Remote processing will be from secure locations within the UK.
Access to confidential patient identifiable data is restricted to employees of LOLIPOP Study Research team at Imperial College London.
Data will be accessed by individuals with an honorary contract with Imperial College London. The individual(s) will act as an agent of Imperial College London at all times under supervision from employees of Imperial College London. Aside from this/these individuals, access is restricted to employees or agents of Imperial College London who have authorisation from the Principal Investigator.
The aggregated data with small numbers suppressed are transferred out of the CSRE by authorised users on Imperial ICT managed devices. NHS England data is only accessed by approved users of the data controller or data processors, and only for the purposes described in this document. All individuals accessing record level data are substantive ICL employees, registered students (including PhD and Masters students) or individuals from other institutions under an honorary contract with ICL.
All personnel accessing the Data have been appropriately trained in data protection and confidentiality.
The Data will not be linked with any other data.
There will be no requirement and no attempt to reidentify individuals when using the Data.
Researchers from the LOLIPOP Study at Imperial College London will process the Data for the purposes described above.
Expected output
The expected outputs of the processing will be:
• Submissions to peer reviewed journals: LOLIPOP resource has supported over 400 projects resulting on over 225 publications to date. Details can be accessed here: https://www.sabiobank.org/approved-research/ and https://www.sabiobank.org/publications/
The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals: the target dates for submission of updated scientific papers on mid- and long-term health implications of these risk factors for South Asians are 2028 for mid-term outcomes and 2034 for longer-term effects.
• Presentations: Findings on the relationship between genetic, lifestyle, and environmental factors with health outcomes will be presented at high-profile international conferences in cardiometabolic health and public health, including the British Cardiovascular Society Conference, American Heart Association Scientific Sessions, and the European Society of Cardiology Congress.
• Publications and Presentations on Additional Risk Factors: Papers and presentations will cover the influence of additional lifestyle and environmental risk factors on health outcomes, disseminating findings relevant to health disparities within the South Asian population.
• Progress Reports: Annual progress reports will be provided to funding bodies, with additional updates shared through the ResearchFish platform.
• Stakeholder Dissemination: Findings will be shared with a wider group of stakeholders, including public health agencies, South Asian health organisations, and academic institutions, to inform interventions targeting health inequalities.
• Lay Summaries and Website Updates: Executive summaries of published reports will be prepared in lay language for participants, the South Asian community, and the general public. These summaries will be available on the LOLIPOP study website, with release dates matching the publication of respective health outcomes.
• Periodic Newsletters: Newsletters summarising study progress and findings will be sent to participants and published on the study website.
• Community and Policy Engagement: Findings relevant to public health policies addressing health disparities among South Asians will be shared with healthcare policymakers and community health organisations to guide intervention strategies. All outputs will include aggregated data with small numbers suppressed to maintain participant confidentiality, and no individually identifiable data will be released.
These dissemination efforts aim to maximise the impact of LOLIPOP findings on public health strategies, foster engagement with the South Asian community, and contribute to research in cardiometabolic health disparities.
• Reports aimed at participants/patients describing the prevalence of cardiometabolic risk factors and health outcomes in the South Asian population from the LOLIPOP 2003 has been published, and further analyses are underway to examine associations between genetic, lifestyle, and environmental factors and chronic disease risk.
Expected measurable benefits
The findings of this research study are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to the subject matter of the study.
The use of the data could:
• help the system to better understand the health and care needs of populations.
• advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as cardiovascular disease and diabetes.
• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.
• inform decisions on how to effectively allocate and evaluate funding according to health needs.
• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.
Benefits to Patients.
In Understanding Health Risks in South Asians:
1. Given the currently unknown exact incidence of Coronary Heart Disease (CHD) and diabetes in this group, this study’s ability to link participant data to national health datasets will provide a robust, objective measure of disease incidence and risk profiles.
The study team is currently analysing preliminary data on cardiometabolic risk and has detected early indicators of susceptibility linked to genetic predisposition, lifestyle factors, and environmental exposures. Although certain physiological and genetic markers associated with increased risk been identified, these findings underscore the need for longer-term monitoring to fully understand future health risks.
2. Helping Future Generations: The LOLIPOP Study is generating critical knowledge that will benefit not only the current South Asian population but also future generations, contributing to health improvements for this community and society as a whole. By analysing data and biological samples, the study aims to better understand the risks and causes of CHD, diabetes, and other chronic diseases, providing valuable insights that can inform preventive and treatment strategies.
3. The findings from this study are expected to influence future health policies and practices for reducing disease risk within this high-risk group, with benefits assessed through epidemiological analyses. The study's results are expected to contribute to public health policies, such as targeted dietary recommendations, lifestyle interventions, and culturally tailored health strategies,
3. Understanding Potential Impacts of Dietary and Lifestyle Patterns on Health: One area of focus for the LOLIPOP Study is the potential impact of specific dietary patterns and lifestyle factors prevalent among South Asians—such as high carbohydrate intake and lower physical activity levels—on the development of chronic diseases.
By linking baseline data on these factors with hospital admissions, mortality data, and cancer registry information, the study aims to assess how lifestyle patterns may contribute to cardiometabolic risk and whether these factors exceed recommended health limits. This analysis will clarify the influence of diet and lifestyle on disease risk and inform recommendations tailored specifically for the South Asian community.
4. Clarity on Long-Term Health Effects of Genetic and Environmental Interactions: LOLIPOP continues to analyse extensive baseline data on genetic predispositions, environmental exposures, and biological samples collected from participants, aiming to better understand how these factors interact to influence long-term health outcomes.
Linking this baseline information with hospital admissions, mortality, and cancer registry data enables the study to place potential health risks in context, offering an evidence-based perspective on chronic disease causation and risk among South Asians. Findings from LOLIPOP will support strategic health decisions, inform future public health investments, and contribute to global health reviews, such as those conducted by the World Health Organisation, on chronic disease prevention and intervention.
5. Responsibility to the Health and Welfare of the South Asian Population: South Asians face unique health risks due to a combination of genetic predispositions, environmental factors, and cultural lifestyle patterns that are not fully understood. By linking hospital admissions, mortality data, and cancer registry information with baseline health and biological data, LOLIPOP establishes a comprehensive understanding of the factors influencing health outcomes over time.
Target Dates: Medium-term findings are targeted for 2030, with comprehensive long-term analyses expected by 2035.
It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.
Benefits reported so far
Validated linkage achieved: Participant data for the LOLIPOP cohort were successfully validated and matched by NHS England (SEFT Participant Data Submission ID 18470980, file NIC-719923-Q5H1S-20250728.csv, validated 28 July 2025), enabling accurate ascertainment of hospitalisations, outpatient care, critical care episodes, cancer registrations and deaths for consenting participants.
High-impact research outputs: NHS-linked analyses from the LOLIPOP resource have supported 400+ projects and yielded 225+ peer-reviewed publications, including work on cardiometabolic risk and health inequalities in UK South Asians (example outputs listed in the application).
Improved cohort follow-up: Regular PDS demographic updates (as set out in this DSA) support tracing and timely recording of deaths, reducing loss-to-follow-up and preventing inappropriate contact with families—directly improving research quality and safeguarding.
These benefits have already strengthened the evidence base for prevention and service planning in high-risk communities. Completing the missing HES APC years (1999 and 2019) will remove residual coverage gaps and further improve the precision of incidence estimates and trend analyses.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(c)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Cancer Registration Data | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Civil Registrations of Death | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Demographics | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Emergency Care Data Set (ECDS) | Identifiable | Non-Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Hospital Episode Statistics Accident and Emergency (HES A and E) | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Identifiable | Non-Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Hospital Episode Statistics Critical Care (HES Critical Care) | Identifiable | Non-Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Hospital Episode Statistics Outpatients (HES OP) | Identifiable | Non-Sensitive | Ongoing | Consent (Reasonable Expectation) |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were not applied to any of the 183 files released under this agreement, across every version. About opt-outs
Files released against version 2.2 of this agreement, summarised by dataset.
| Dataset | Files | First released | Last released | Opt-outs applied |
|---|---|---|---|---|
| Hospital Episode Statistics Admitted Patient Care (HES APC) | 28 | February 2026 | February 2026 | No |
| Hospital Episode Statistics Outpatients (HES OP) | 22 | February 2026 | February 2026 | No |
| Hospital Episode Statistics Critical Care (HES Critical Care) | 17 | February 2026 | February 2026 | No |
| Hospital Episode Statistics Accident and Emergency (HES A and E) | 13 | February 2026 | February 2026 | No |
| Emergency Care Data Set (ECDS) | 8 | February 2026 | February 2026 | No |
| Cancer Registration Data | 1 | February 2026 | February 2026 | No |
| Civil Registrations of Death | 1 | February 2026 | February 2026 | No |
| Demographics | 1 | February 2026 | February 2026 | No |
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions.
DARS-NIC-719923-Q5H1S-v2.2 30 January 2026 to 13 July 2028
- Title
- London Life Sciences Population Study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 8
- Files released
- 91
Datasets: Cancer Registration Data; Civil Registrations of Death; Demographics; Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP)
What changed from DARS-NIC-719923-Q5H1S-v1.4
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2026-01-30 |
Benefits reported
Not stated in the previous version; added here.
Validated linkage achieved: Participant data for the LOLIPOP cohort were successfully validated and matched by NHS England (SEFT Participant Data Submission ID 18470980, file NIC-719923-Q5H1S-20250728.csv, validated 28 July 2025), enabling accurate ascertainment of hospitalisations, outpatient care, critical care episodes, cancer registrations and deaths for consenting participants.
High-impact research outputs: NHS-linked analyses from the LOLIPOP resource have supported 400+ projects and yielded 225+ peer-reviewed publications, including work on cardiometabolic risk and health inequalities in UK South Asians (example outputs listed in the application).
Improved cohort follow-up: Regular PDS demographic updates (as set out in this DSA) support tracing and timely recording of deaths, reducing loss-to-follow-up and preventing inappropriate contact with families—directly improving research quality and safeguarding.
These benefits have already strengthened the evidence base for prevention and service planning in high-risk communities. Completing the missing HES APC years (1999 and 2019) will remove residual coverage gaps and further improve the precision of incidence estimates and trend analyses.
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits.
DARS-NIC-719923-Q5H1S-v1.4 14 July 2025 to 13 July 2028
- Title
- London Life Sciences Population Study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 8
- Files released
- 7
Datasets: Cancer Registration Data; Civil Registrations of Death; Demographics; Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP)
What changed from DARS-NIC-719923-Q5H1S-v0.6
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-07-14 | |
| End date | 2028-07-13 |
Processing activities
Imperial College London will transfer data to NHS England. The data will consist of identifying details, Date of Birth, Postcode, Gender,
Name
Name, NHS Number
and a unique person ID for the cohort to be linked with NHS England data.
[24 paragraphs unchanged]
Benefits reported
Stated in the previous version and removed here.
Yielded Benefits is not a requirement for new applications.
Unchanged: Objective for processing, Expected output, Expected measurable benefits.
Objective for processing
Imperial College London requires access to NHS England data for the purpose of the following research project:
London Life Sciences Population (LOLIPOP)
The following is a summary of the aims of the research project provided by Imperial College London:
LOLIPOP was established to understand the significant health disparities faced by South Asians, including approximately double the risk of coronary heart disease (CHD) and triple the risk of type-2 diabetes, compared to the European population. LOLIPOP is a national study, and the data requested reflects the geographical diversity of the cohort, which includes participants recruited from across the UK. This breadth of data is essential for assessing health outcomes across different regional and environmental contexts
LOLIPOP 2003, is a cohort of ~32,000 participants (including 17,606 UK South Asians) aged 35-75 years, recruited from the lists of 58 GPs in NW London (2003-8), and followed up for ~20 years.
LOLIPOP 2020, is currently a cohort of, ~53,000 UK South Asians, aged 18-85 years, recruited from the lists of GP across UK (2020-2024).
The recruitment phase for the LOLIPOP study's initial cohort, LOLIPOP 2003, was completed in 2008, and baseline data collection for the LOLIPOP 2020 cohort was completed in 2024.
LOLIPOP aims to investigate genetic, environmental, and lifestyle factors underlying high rates of CHD, type-2 diabetes, and other chronic diseases (including cancer, cognitive impairment, neuropsychiatric conditions, and neurodegenerative effects), within the context of complex interactions among genetic predispositions and lifestyle or environmental exposures, providing a comprehensive understanding of the unique health challenges faced by the South Asian population.
LOLIPOP is a unique scientific resource and one of the largest prospective studies globally, focusing on health outcomes in South Asians and addressing critical public health needs in this population. The data requested will be used to provide a comprehensive set of outcomes to understand the health risks specific to South Asians, a group at increased risk of CHD, diabetes, and related conditions
The following NHS England Data will be accessed:
Hospital Episode Statistics
o Admitted Patient Care, Accident & Emergency. Critical Care, Outpatients, Emergency Care Data Set (ECDS) – necessary to evaluate records of hospital attendances and admissions for all conditions, allowing for a broad analysis of cardiometabolic and other health outcomes.
HES data provides a more comprehensive medical history, giving information on underlying conditions and treatments. LOLIPOP requires HES data linked to cohort participants for all requested years to perform statistical analyses to investigate whether associations exist between genetic, lifestyle, and environmental factors and adverse health outcomes, such as cardiovascular disease, stroke, and diabetes to explore the implications of these exposures on wider health outcomes within the South Asian population.
• Civil Registration Mortality – necessary to evaluate cause-specific mortality in cancers and other chronic diseases in relation to genetic, lifestyle, and environmental exposures. Additionally, if a participant passes away during the study, it is essential that the study is notified of this to ensure that the participant’s family is not contacted regarding study developments
• Cancer Registration – necessary for any cancers participants have been diagnosed with, enabling analysis of cancer incidence and risk factors.
• Demographics – necessary to obtain updates to participant demographics, postal addresses, and registered GP practices to support accurate follow-up and minimise loss-to-follow-up bias. LOLIPOP periodically re-contacts participants for follow-up questionnaires and health screenings, and it is important to have correct and up-to-date contact details, particularly for participants without valid postal or email addresses. Although LOLIPOP encourages participants to inform the study team when they move, this is not a failsafe method for ensuring accuracy.
LOLIPOP requires long-term prospective follow-up of the health of the cohorts. Previous studies investigating potential causal factors in South Asians have been hampered by small sample sizes, a lack of longitudinal data, limited phenotyping, and a reduced ability to draw directional or causal inferences
The level of the Data will be Identifiable – necessary because LOLIPOP periodically re-contacts participants for follow-up questionnaires and health screenings, and it is important to have correct and up-to-date contact details, particularly for participants without valid postal or email addresses. Although LOLIPOP encourages participants to inform the study team when they move, this is not a failsafe method for ensuring accuracy
The Data will be minimised as follows:
• Limited to a study cohort identified by Imperial College London – those participants who have consented to the linkage of their health data
• Limited to a cohort of 100,00 aged ranges from 18-85 years
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by Wellcome Trust. The funding is specifically for the Longitudinal Population Studies, ‘South Asia Biobank’ described.
The funder will have no ability to suppress or otherwise limit the publication of findings.
Imperial College London Certified Secure Research Environment (CSRE) is an isolated environment within the Imperial College network, physically located at a Slough data centre operated by Virtus SDC Ltd.
LOLIPOP Scientific Advisory Group: The Scientific Advisory Group (SAG) for the LOLIPOP study is established and provides expert guidance on the study’s overall strategy, scientific direction, and ongoing oversight. The SAG advises the Principal Investigators, research team, and senior academic partners, ensuring that the research aligns with current scientific standards and public health priorities. The group is composed of senior-level experts across key disciplines, including cardiovascular and metabolic health, epidemiology, genetic research, and biostatistics, whose expertise is critical to achieving the study’s objectives.
LOLIPOP Participant Advisory Group: The Participant Advisory Group (PAG) plays a critical role in ensuring that participant perspectives are actively incorporated into the LOLIPOP study’s research process. The PAG works to prioritise research questions that matter most to South Asian communities. PAG facilitates culturally sensitive discussions around topics like consent, genetic testing and health needs.
Data will be accessed by:
· A PhD student enrolled with Imperial College London. The individual has completed mandatory data protection and confidentiality training and is subject to Imperial College London policies on data protection and confidentiality. The individual accessing the data will do so under the supervision of a substantive employee of Imperial College London. Imperial College London would be responsible and liable for any work carried out by the individual. The PhD student would only work on the data for the purposes described in this Data Sharing Agreement (DSA).
The data will be used as part of the PhD research project, of which is fundamentally made on behalf of the wider LOLIPOP study. The PhD project represents one specific use case embedded within a broader, long-term research programme focused on understanding the genetic, environmental, and lifestyle determinants of cardiometabolic disease in South Asian populations.
Data will be accessed by:
• Individuals holding an honorary contract under the supervision of a substantive employee of Imperial College London for the purposes described in this DSA only. Imperial College London must maintain records in a single location that cover the following details of each individual given access under an honorary contract:
o Their substantive employer;
o Their role in respect of the purpose for the processing specified in the DSA;
o The start date and end date of the duration in which the Data will be accessed by the individual under an honorary contract;
o The necessity for the Data to be accessed by the person(s) holding an honorary contract, instead of a substantive employee of an organisation named as controller or a processor in this DSA;
o Confirmation that an appropriate contract is in place which follows the relevant guidance and is countersigned by the substantive employer of the honorary contract holder.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group strongly supported the collection of the data for the purposes described above.
The LOLIPOP study builds on ~20 years of trusted partnerships within UK South Asian communities.
Participants and advocacy groups engage in community workshops, seminars, conferences.
Both the SAG and PAG play pivotal roles in connecting community voices to the scientific framework, ensuring that the study remains participant-focused while adhering to the highest standards of scientific rigor. This dual approach integrates the perspectives of both experts and community stakeholders, fostering a research environment that is ethical, impactful, and culturally sensitive
Expected output
The expected outputs of the processing will be:
• Submissions to peer reviewed journals: LOLIPOP resource has supported over 400 projects resulting on over 225 publications to date. Details can be accessed here: https://www.sabiobank.org/approved-research/ and https://www.sabiobank.org/publications/
The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals: the target dates for submission of updated scientific papers on mid- and long-term health implications of these risk factors for South Asians are 2028 for mid-term outcomes and 2034 for longer-term effects.
• Presentations: Findings on the relationship between genetic, lifestyle, and environmental factors with health outcomes will be presented at high-profile international conferences in cardiometabolic health and public health, including the British Cardiovascular Society Conference, American Heart Association Scientific Sessions, and the European Society of Cardiology Congress.
• Publications and Presentations on Additional Risk Factors: Papers and presentations will cover the influence of additional lifestyle and environmental risk factors on health outcomes, disseminating findings relevant to health disparities within the South Asian population.
• Progress Reports: Annual progress reports will be provided to funding bodies, with additional updates shared through the ResearchFish platform.
• Stakeholder Dissemination: Findings will be shared with a wider group of stakeholders, including public health agencies, South Asian health organisations, and academic institutions, to inform interventions targeting health inequalities.
• Lay Summaries and Website Updates: Executive summaries of published reports will be prepared in lay language for participants, the South Asian community, and the general public. These summaries will be available on the LOLIPOP study website, with release dates matching the publication of respective health outcomes.
• Periodic Newsletters: Newsletters summarising study progress and findings will be sent to participants and published on the study website.
• Community and Policy Engagement: Findings relevant to public health policies addressing health disparities among South Asians will be shared with healthcare policymakers and community health organisations to guide intervention strategies. All outputs will include aggregated data with small numbers suppressed to maintain participant confidentiality, and no individually identifiable data will be released.
These dissemination efforts aim to maximise the impact of LOLIPOP findings on public health strategies, foster engagement with the South Asian community, and contribute to research in cardiometabolic health disparities.
• Reports aimed at participants/patients describing the prevalence of cardiometabolic risk factors and health outcomes in the South Asian population from the LOLIPOP 2003 has been published, and further analyses are underway to examine associations between genetic, lifestyle, and environmental factors and chronic disease risk.
DARS-NIC-719923-Q5H1S-v0.6 4 April 2025 to 13 March 2028
- Title
- London Life Sciences Population Study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 8
- Files released
- 85
Datasets: Cancer Registration Data; Civil Registrations of Death; Demographics; Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP)
Objective for processing
Imperial College London requires access to NHS England data for the purpose of the following research project:
London Life Sciences Population (LOLIPOP)
The following is a summary of the aims of the research project provided by Imperial College London:
LOLIPOP was established to understand the significant health disparities faced by South Asians, including approximately double the risk of coronary heart disease (CHD) and triple the risk of type-2 diabetes, compared to the European population. LOLIPOP is a national study, and the data requested reflects the geographical diversity of the cohort, which includes participants recruited from across the UK. This breadth of data is essential for assessing health outcomes across different regional and environmental contexts
LOLIPOP 2003, is a cohort of ~32,000 participants (including 17,606 UK South Asians) aged 35-75 years, recruited from the lists of 58 GPs in NW London (2003-8), and followed up for ~20 years.
LOLIPOP 2020, is currently a cohort of, ~53,000 UK South Asians, aged 18-85 years, recruited from the lists of GP across UK (2020-2024).
The recruitment phase for the LOLIPOP study's initial cohort, LOLIPOP 2003, was completed in 2008, and baseline data collection for the LOLIPOP 2020 cohort was completed in 2024.
LOLIPOP aims to investigate genetic, environmental, and lifestyle factors underlying high rates of CHD, type-2 diabetes, and other chronic diseases (including cancer, cognitive impairment, neuropsychiatric conditions, and neurodegenerative effects), within the context of complex interactions among genetic predispositions and lifestyle or environmental exposures, providing a comprehensive understanding of the unique health challenges faced by the South Asian population.
LOLIPOP is a unique scientific resource and one of the largest prospective studies globally, focusing on health outcomes in South Asians and addressing critical public health needs in this population. The data requested will be used to provide a comprehensive set of outcomes to understand the health risks specific to South Asians, a group at increased risk of CHD, diabetes, and related conditions
The following NHS England Data will be accessed:
Hospital Episode Statistics
o Admitted Patient Care, Accident & Emergency. Critical Care, Outpatients, Emergency Care Data Set (ECDS) – necessary to evaluate records of hospital attendances and admissions for all conditions, allowing for a broad analysis of cardiometabolic and other health outcomes.
HES data provides a more comprehensive medical history, giving information on underlying conditions and treatments. LOLIPOP requires HES data linked to cohort participants for all requested years to perform statistical analyses to investigate whether associations exist between genetic, lifestyle, and environmental factors and adverse health outcomes, such as cardiovascular disease, stroke, and diabetes to explore the implications of these exposures on wider health outcomes within the South Asian population.
• Civil Registration Mortality – necessary to evaluate cause-specific mortality in cancers and other chronic diseases in relation to genetic, lifestyle, and environmental exposures. Additionally, if a participant passes away during the study, it is essential that the study is notified of this to ensure that the participant’s family is not contacted regarding study developments
• Cancer Registration – necessary for any cancers participants have been diagnosed with, enabling analysis of cancer incidence and risk factors.
• Demographics – necessary to obtain updates to participant demographics, postal addresses, and registered GP practices to support accurate follow-up and minimise loss-to-follow-up bias. LOLIPOP periodically re-contacts participants for follow-up questionnaires and health screenings, and it is important to have correct and up-to-date contact details, particularly for participants without valid postal or email addresses. Although LOLIPOP encourages participants to inform the study team when they move, this is not a failsafe method for ensuring accuracy.
LOLIPOP requires long-term prospective follow-up of the health of the cohorts. Previous studies investigating potential causal factors in South Asians have been hampered by small sample sizes, a lack of longitudinal data, limited phenotyping, and a reduced ability to draw directional or causal inferences
The level of the Data will be Identifiable – necessary because LOLIPOP periodically re-contacts participants for follow-up questionnaires and health screenings, and it is important to have correct and up-to-date contact details, particularly for participants without valid postal or email addresses. Although LOLIPOP encourages participants to inform the study team when they move, this is not a failsafe method for ensuring accuracy
The Data will be minimised as follows:
• Limited to a study cohort identified by Imperial College London – those participants who have consented to the linkage of their health data
• Limited to a cohort of 100,00 aged ranges from 18-85 years
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by Wellcome Trust. The funding is specifically for the Longitudinal Population Studies, ‘South Asia Biobank’ described.
The funder will have no ability to suppress or otherwise limit the publication of findings.
Imperial College London Certified Secure Research Environment (CSRE) is an isolated environment within the Imperial College network, physically located at a Slough data centre operated by Virtus SDC Ltd.
LOLIPOP Scientific Advisory Group: The Scientific Advisory Group (SAG) for the LOLIPOP study is established and provides expert guidance on the study’s overall strategy, scientific direction, and ongoing oversight. The SAG advises the Principal Investigators, research team, and senior academic partners, ensuring that the research aligns with current scientific standards and public health priorities. The group is composed of senior-level experts across key disciplines, including cardiovascular and metabolic health, epidemiology, genetic research, and biostatistics, whose expertise is critical to achieving the study’s objectives.
LOLIPOP Participant Advisory Group: The Participant Advisory Group (PAG) plays a critical role in ensuring that participant perspectives are actively incorporated into the LOLIPOP study’s research process. The PAG works to prioritise research questions that matter most to South Asian communities. PAG facilitates culturally sensitive discussions around topics like consent, genetic testing and health needs.
Data will be accessed by:
· A PhD student enrolled with Imperial College London. The individual has completed mandatory data protection and confidentiality training and is subject to Imperial College London policies on data protection and confidentiality. The individual accessing the data will do so under the supervision of a substantive employee of Imperial College London. Imperial College London would be responsible and liable for any work carried out by the individual. The PhD student would only work on the data for the purposes described in this Data Sharing Agreement (DSA).
The data will be used as part of the PhD research project, of which is fundamentally made on behalf of the wider LOLIPOP study. The PhD project represents one specific use case embedded within a broader, long-term research programme focused on understanding the genetic, environmental, and lifestyle determinants of cardiometabolic disease in South Asian populations.
Data will be accessed by:
• Individuals holding an honorary contract under the supervision of a substantive employee of Imperial College London for the purposes described in this DSA only. Imperial College London must maintain records in a single location that cover the following details of each individual given access under an honorary contract:
o Their substantive employer;
o Their role in respect of the purpose for the processing specified in the DSA;
o The start date and end date of the duration in which the Data will be accessed by the individual under an honorary contract;
o The necessity for the Data to be accessed by the person(s) holding an honorary contract, instead of a substantive employee of an organisation named as controller or a processor in this DSA;
o Confirmation that an appropriate contract is in place which follows the relevant guidance and is countersigned by the substantive employer of the honorary contract holder.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group strongly supported the collection of the data for the purposes described above.
The LOLIPOP study builds on ~20 years of trusted partnerships within UK South Asian communities.
Participants and advocacy groups engage in community workshops, seminars, conferences.
Both the SAG and PAG play pivotal roles in connecting community voices to the scientific framework, ensuring that the study remains participant-focused while adhering to the highest standards of scientific rigor. This dual approach integrates the perspectives of both experts and community stakeholders, fostering a research environment that is ethical, impactful, and culturally sensitive
Expected output
The expected outputs of the processing will be:
• Submissions to peer reviewed journals: LOLIPOP resource has supported over 400 projects resulting on over 225 publications to date. Details can be accessed here: https://www.sabiobank.org/approved-research/ and https://www.sabiobank.org/publications/
The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals: the target dates for submission of updated scientific papers on mid- and long-term health implications of these risk factors for South Asians are 2028 for mid-term outcomes and 2034 for longer-term effects.
• Presentations: Findings on the relationship between genetic, lifestyle, and environmental factors with health outcomes will be presented at high-profile international conferences in cardiometabolic health and public health, including the British Cardiovascular Society Conference, American Heart Association Scientific Sessions, and the European Society of Cardiology Congress.
• Publications and Presentations on Additional Risk Factors: Papers and presentations will cover the influence of additional lifestyle and environmental risk factors on health outcomes, disseminating findings relevant to health disparities within the South Asian population.
• Progress Reports: Annual progress reports will be provided to funding bodies, with additional updates shared through the ResearchFish platform.
• Stakeholder Dissemination: Findings will be shared with a wider group of stakeholders, including public health agencies, South Asian health organisations, and academic institutions, to inform interventions targeting health inequalities.
• Lay Summaries and Website Updates: Executive summaries of published reports will be prepared in lay language for participants, the South Asian community, and the general public. These summaries will be available on the LOLIPOP study website, with release dates matching the publication of respective health outcomes.
• Periodic Newsletters: Newsletters summarising study progress and findings will be sent to participants and published on the study website.
• Community and Policy Engagement: Findings relevant to public health policies addressing health disparities among South Asians will be shared with healthcare policymakers and community health organisations to guide intervention strategies. All outputs will include aggregated data with small numbers suppressed to maintain participant confidentiality, and no individually identifiable data will be released.
These dissemination efforts aim to maximise the impact of LOLIPOP findings on public health strategies, foster engagement with the South Asian community, and contribute to research in cardiometabolic health disparities.
• Reports aimed at participants/patients describing the prevalence of cardiometabolic risk factors and health outcomes in the South Asian population from the LOLIPOP 2003 has been published, and further analyses are underway to examine associations between genetic, lifestyle, and environmental factors and chronic disease risk.
Benefits reported
Yielded Benefits is not a requirement for new applications.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.
-
June 2025 —
first listed. 1 version: DARS-NIC-719923-Q5H1S-v0.6
-
August 2025
1 version added: DARS-NIC-719923-Q5H1S-v1.4
-
February 2026
1 version added: DARS-NIC-719923-Q5H1S-v2.2
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-719923-Q5H1S, “London Life Sciences Population Study”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-719923-q5h1s/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-719923-Q5H1S to see the original rows.