DATAMIND: Data Hub for Mental health INformatics research Development
Lead Research Organisation:
Swansea University
Department Name: Institute of Life Science Medical School
Abstract
DATAMIND: Data Hub for Mental health INformatics research Development
What is the problem?
Poor mental health affects everyone at some point in their lives to varying degrees. It is the biggest cause of ill-health and the links, both ways, between physical and mental ill-health are often overlooked. People with mental illness are less likely to take part in or remain in usual types of research studies, be they about physical or mental health, or they are actively excluded. This means that much of what we know about mental illness is not based on the very people who are worst affected. However, the UK has some of the best data in the world to look at how to prevent mental ill-health and maintain and improve people's mental health. Real-world data, often but not always collected routinely as people go about their everyday lives, offers powerful solutions to overcome these issues. We should use them but at the moment, they are hard to find, applying to use them is tedious, and using them can be hard work. Also, people working on physical health, like heart disease, and mental health tend to work apart, without looking at the links or sharing their work.
What will we do about it?
We want to improve people's mental health by changing the way the NHS, charities, Industry and researchers use and share information that's already out there. We will create a Hub where researchers and others can find and use mental health data to benefit patients and the public and improve care. We are going to work with people, patients and people with personal experience of mental health to understand who they are happy with and trust to use their data, and develop ways people can work together on mental health. We are also going to work with researchers, policy makers, charities and people in industry to understand what sort of data they think can answer the questions they want to ask.We plan to find, list and share where people do not usually look for mental health data- like in trials about heart disease.
We will make it easier for everyone invested in mental health to use data in safe, secure and sometimes new ways. Our Hub is led from across the four nations of the UK so that mental health data will relate to everyone. The Hub will allow future work to happen using data from places outside of usual health care e.g. in new places like schools or from charities.
It will ensure everyone's voice is heard- even those who do not usually take part in research.
We also plan to work closely with others doing the same sort of work as us but in different areas like diabetes so we can understand the links and share learning.
How will this benefit people?
By making it easier to know where the data need may be and how to use it the Hub will support excellent research in cutting-edge ways that will improve the lives of people living with poor mental health in the UK. We have involved patients and the public from the very start and will continue to do so - this is why there are patient and public members who have worked with us on developing this. We have assembled a group of researchers across a number of universities who have lots of experience in doing this sort of work with the view of preventing and improving mental health for all.
What is the problem?
Poor mental health affects everyone at some point in their lives to varying degrees. It is the biggest cause of ill-health and the links, both ways, between physical and mental ill-health are often overlooked. People with mental illness are less likely to take part in or remain in usual types of research studies, be they about physical or mental health, or they are actively excluded. This means that much of what we know about mental illness is not based on the very people who are worst affected. However, the UK has some of the best data in the world to look at how to prevent mental ill-health and maintain and improve people's mental health. Real-world data, often but not always collected routinely as people go about their everyday lives, offers powerful solutions to overcome these issues. We should use them but at the moment, they are hard to find, applying to use them is tedious, and using them can be hard work. Also, people working on physical health, like heart disease, and mental health tend to work apart, without looking at the links or sharing their work.
What will we do about it?
We want to improve people's mental health by changing the way the NHS, charities, Industry and researchers use and share information that's already out there. We will create a Hub where researchers and others can find and use mental health data to benefit patients and the public and improve care. We are going to work with people, patients and people with personal experience of mental health to understand who they are happy with and trust to use their data, and develop ways people can work together on mental health. We are also going to work with researchers, policy makers, charities and people in industry to understand what sort of data they think can answer the questions they want to ask.We plan to find, list and share where people do not usually look for mental health data- like in trials about heart disease.
We will make it easier for everyone invested in mental health to use data in safe, secure and sometimes new ways. Our Hub is led from across the four nations of the UK so that mental health data will relate to everyone. The Hub will allow future work to happen using data from places outside of usual health care e.g. in new places like schools or from charities.
It will ensure everyone's voice is heard- even those who do not usually take part in research.
We also plan to work closely with others doing the same sort of work as us but in different areas like diabetes so we can understand the links and share learning.
How will this benefit people?
By making it easier to know where the data need may be and how to use it the Hub will support excellent research in cutting-edge ways that will improve the lives of people living with poor mental health in the UK. We have involved patients and the public from the very start and will continue to do so - this is why there are patient and public members who have worked with us on developing this. We have assembled a group of researchers across a number of universities who have lots of experience in doing this sort of work with the view of preventing and improving mental health for all.
Technical Summary
Despite the significant health, social and economic burden caused by mental health disorders, research to address them is currently constrained by a number of issues. People who have mental health disorders are socially excluded, less likely to participate in research studies and, if they do, remain in follow-up. Consequently, those with these disorders are inadequately served by consented research studies which under-represent those at greatest need. Moreover, in spite of the huge potential of data-centric health research and the UK's internationally leading status in terms of mental data resources (such as longitudinal and cohort studies, and data platforms), such resources are not yet well coordinated, and mental data research is not well integrated with physical health specialities (despite well-recognised interactions).
Our new Mental Health Data Research Hub will maximise the value of the UK's rich mental health data assets and enable coordinated research, with the ultimate aim of improving lives. The Hub will transform MH research in the UK by providing a central, integrated data infrastructure - with Findable, Accessible, Interoperable, and Reusable - FAIR mental health rich datasets from diverse sources; underpinned by expertise, innovation, responsible-use principles and embedded public participation; for use across Academia, the NHS, Third Sector, Policy Makers and Industry. The Hub infrastructure will be co-located at 4 lead sites in UK covering the four nations. A core activity is indexing and curating data for research, development and innovation across stakeholders. The Hub will continuously, from its onset, catalogue relevant UK mental health rich datasets, including genomics, routine care, cohorts and trials, often through the Catalogue of Mental Health Measures as well as novel data from schools and charities and make them discoverable and therefore useable through the
HDRUK Gateway.
Our new Mental Health Data Research Hub will maximise the value of the UK's rich mental health data assets and enable coordinated research, with the ultimate aim of improving lives. The Hub will transform MH research in the UK by providing a central, integrated data infrastructure - with Findable, Accessible, Interoperable, and Reusable - FAIR mental health rich datasets from diverse sources; underpinned by expertise, innovation, responsible-use principles and embedded public participation; for use across Academia, the NHS, Third Sector, Policy Makers and Industry. The Hub infrastructure will be co-located at 4 lead sites in UK covering the four nations. A core activity is indexing and curating data for research, development and innovation across stakeholders. The Hub will continuously, from its onset, catalogue relevant UK mental health rich datasets, including genomics, routine care, cohorts and trials, often through the Catalogue of Mental Health Measures as well as novel data from schools and charities and make them discoverable and therefore useable through the
HDRUK Gateway.
Organisations
- Swansea University (Lead Research Organisation)
- Kooth plc (Collaboration)
- University College London (Collaboration)
- Akrivia Health (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- AIMES Grid Services Ltd (Collaboration)
- MQ Mental Health Research (Collaboration)
- Manchester University (Collaboration)
- Cardiff University (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- SAIL Databank (Collaboration)
- BANGOR UNIVERSITY (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- Medicines Discovery Catapult (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- McPin Foundation (Collaboration)
- National Collaborating Centre for Mental Health (NCC MH) (Collaboration)
- University of Bristol (Collaboration)
- Psychiatric Genomics Consortium (PGC) (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
Publications
Heslin M
(2023)
Prevalence of HIV in mental health service users: a retrospective cohort study.
in BMJ open
Huggins C
(2021)
TeenCovidLife: a resource to understand the impact of the COVID-19 pandemic on adolescents in Scotland
in Wellcome Open Research
Huggins CF
(2021)
TeenCovidLife: a resource to understand the impact of the COVID-19 pandemic on adolescents in Scotland.
in Wellcome open research
Impara E
(2022)
COVID-19 ethnic inequalities in mental health and multimorbidities: protocol for the COVEIMM study.
in Social psychiatry and psychiatric epidemiology
Iveson M
(2022)
Intergenerational Social Mobility and Health in Later Life: Diagonal Reference Models Applied to the Lothian Birth Cohort 1936
in The Journals of Gerontology: Series B
Iveson MH
(2023)
Childhood cognitive ability and self-harm and suicide in later life.
in medRxiv : the preprint server for health sciences
Jiang JC
(2023)
Investigating the potential anti-depressive mechanisms of statins: a transcriptomic and Mendelian randomization analysis.
in Translational psychiatry
Description | APPG Medical Research RoundTable on Mental Health Inequalities |
Geographic Reach | National |
Policy Influence Type | Participation in a guidance/advisory committee |
Description | Invited to sit on the Welsh Government's newly formed Oversight & Delivery Board, as part of work carried out by the Mental Health and Wellbeing in Education branch. |
Geographic Reach | Local/Municipal/Regional |
Policy Influence Type | Participation in a guidance/advisory committee |
Description | An investigation of the epidemiology of falls, fractures and outcomes among people with psychotic and affective disorders |
Amount | £180,272 (GBP) |
Funding ID | ICA-CL-2017-03-001 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 06/2018 |
End | 05/2021 |
Description | DATAMIND: Data Hub for Mental health INformatics research Development |
Amount | £2,031,434 (GBP) |
Funding ID | MR/W014386/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 09/2021 |
End | 08/2024 |
Description | DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers |
Amount | £3,787,632 (GBP) |
Funding ID | ES/S010351/1 |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 01/2019 |
End | 12/2024 |
Description | Determinants of MLTCs among young adults with mental disorders: a data-linkage study |
Amount | £142,254 (GBP) |
Organisation | Guy’s & St Thomas’ Charity |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 02/2020 |
End | 01/2022 |
Description | Empowering Better End of life Dementia Care (EMBED-Care Programme) |
Amount | £3,719,484 (GBP) |
Funding ID | ES/S010327/1 |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 01/2019 |
End | 12/2024 |
Description | Longitudinal changes in cognitive impairment for patients with Schizophrenia |
Amount | £223,400 (GBP) |
Organisation | Takeda Pharmaceutical Company |
Sector | Private |
Country | Japan |
Start | 02/2019 |
End | 01/2022 |
Description | NIHR Cambridge Biomedical Research Centre |
Amount | £86,200,000 (GBP) |
Funding ID | NIHR203312 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 12/2022 |
End | 11/2027 |
Description | Patterns of Multiple Long-Term Vascular Conditions in Lambeth and Southwark |
Amount | £128,369 (GBP) |
Organisation | Guy’s & St Thomas’ Charity |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 04/2020 |
End | 09/2021 |
Description | SOCIAL AND ECONOMIC PREDICTORS FOR THE COURSE AND PROGNOSIS OF THE SEVERE MENTAL DISORDERS- THE SEP-MD DATA LINKAGE STUDY |
Amount | £161,761 (GBP) |
Funding ID | ES/S002715/1 |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 01/2020 |
End | 07/2023 |
Description | Using smartphone-based personal sensing to understand and predict risk of psychotic relapse at the individual level |
Amount | £754,342 (GBP) |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 10/2019 |
End | 09/2023 |
Description | Violence, Health and Society: VISION |
Amount | £7,128,297 (GBP) |
Funding ID | MR/V049879/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 10/2021 |
End | 09/2026 |
Description | What CAMHS interventions predict positive outcomes for which young people with a social worker: a mixed-methods study of clinical support and cost-effectiveness utilising linked operational data |
Amount | £1,316,008 (GBP) |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 06/2022 |
End | 05/2026 |
Title | A library of natural language processing algorithms to support mental healthcare text analytics |
Description | Through the MRC Mental Health Data Pathfinder award to KCL and supported by the subsequent DATAMIND hub and VISION consortium, we have produced comprehensive online, open-access catalogues, regularly updated on natural language processing algorithms currently supporting research using text fields from electronic mental healthcare records. The functionality of the algorithms has been made available on request through the Mental Health - Text Analytics Cloud (MH-TAC, previously 'GATE Cloud') platform, also developed through the KCL Pathfinder award and DATAMIND hub (and described elsewhere). |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2020 |
Provided To Others? | Yes |
Impact | The algorithms are widely used in CRIS research and have increasingly been run over text from other NHS Mental Health Trusts. |
URL | https://www.maudsleybrc.nihr.ac.uk/facilities/clinical-record-interactive-search-cris/cris-natural-l... |
Title | A platform for enabling sharing of healthcare natural language processing functionality (MH-TAC) |
Description | The Mental Health Text Analytics Cloud (MH-TAC) has been developed as a within-NHS platform to facilitate the sharing of natural language processing algorithms, including but not restricted to the large catalogue developed and maintained at the NIHR Maudsley Biomedical Research Centre. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2023 |
Provided To Others? | Yes |
Impact | Successful prototype development. In use by three separate organisations to date. |
Title | De-identified Bayesian personal identity matching for record linkage despite errors |
Description | Technique for linking records about people (a) without a common person-unique identifier such as an NHS number, but ultimately using names, dates of birth, and so forth; and (b) in de-identified fashion, so none of those identifiers are visible at linkage (irreversibly encrypted versions are used). Currently under review but available as a preprint. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2022 |
Provided To Others? | Yes |
Impact | A candidate method to replace some current national data linkage schemes using identifiable data (and NHS Act Section 251 approval), but peer review awaited. |
URL | https://doi.org/10.21203/rs.3.rs-1929135/v1 |
Title | Recently developed natural language processing algorithms |
Description | Natural language processing algorithms have been developed and/or first applied this year to ascertain recorded instances of violence in mental healthcare, and co-occurring physical health conditions (21 to date). In addition, novel characterisation of psychomotor agitation/retardation is now possible. Finally, a range of 'long Covid' symptoms can now be ascertained - developed in response to PPIE. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2022 |
Provided To Others? | Yes |
Impact | Successful application in a range of completed research projects using mental healthcare data. |
URL | https://www.maudsleybrc.nihr.ac.uk/facilities/clinical-record-interactive-search-cris/cris-natural-l... |
Title | Linkage between CRIS mental healthcare data and HFEA data |
Description | This links mental healthcare data with HFEA data on fertility assessment and treatment, allowing (for the first time) investigations of mental health inequalities in infertility investigation and treatment to be evaluated. |
Type Of Material | Database/Collection of data |
Year Produced | 2022 |
Provided To Others? | Yes |
Impact | These are still rather early days following the linkage. |
URL | https://www.maudsleybrc.nihr.ac.uk/facilities/clinical-record-interactive-search-cris/cris-data-link... |
Title | Linkage between CRIS mental healthcare data and the HIV and AIDS Reporting Service |
Description | A linkage between mental healthcare data and HIV reporting data. This enables (for the first time) mental health inequalities in HIV investigation and/or management to be investigated. |
Type Of Material | Database/Collection of data |
Year Produced | 2022 |
Provided To Others? | Yes |
Impact | At relatively early stages of use. A descriptive paper will be in the public domain shortly. |
Description | Collaboration with the Medicines Discovery Catapult |
Organisation | Medicines Discovery Catapult |
Country | United Kingdom |
Sector | Private |
PI Contribution | We have established a colaboration with the Medicines Discovery Catapult through regular participation in DATAMIND's Industrial forum and as a participant in a newly funded Wellcome Award that seeks to better understand the mechanisms of antidepressants |
Collaborator Contribution | The Catapult has brokered trusted relationships between DATAMIND, specific DATAMIND investigators and collaborators and the pharmaceutical and biotech industries. They have developed a mechansism to search for and retrieve data from unpublished RCTs of psychiatric medications. |
Impact | Grant funding c£4m from the Wellcome Trust |
Start Year | 2022 |
Description | DATAMIND consortium |
Organisation | AIMES Grid Services Ltd |
Country | United Kingdom |
Sector | Private |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Akrivia Health |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Bangor University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Cardiff University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Health Data Research UK |
Country | United Kingdom |
Sector | Private |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | King's College London |
Department | Institute of Psychiatry, Psychology & Neuroscience |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Kooth Plc |
Country | United Kingdom |
Sector | Private |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | MQ Mental Health Research |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Manchester University |
Country | United States |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | McPin Foundation |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | National Collaborating Centre for Mental Health (NCC MH) |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Psychiatric Genomics Consortium (PGC) |
Country | Global |
Sector | Learned Society |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Queen's University Belfast |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | SAIL Databank |
Country | United Kingdom |
Sector | Public |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | Swansea University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | University College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | University of Bristol |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | University of Edinburgh |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | DATAMIND consortium |
Organisation | University of Glasgow |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Cambridge contribution: leading patient/public involvement for DATAMIND, along with technical and epidemiological elements. |
Collaborator Contribution | Other core activities (FAIR curated data, business development/sustainability, workforce capacity/training/development) and "road builder" projects. |
Impact | See ResearchFish for MRC grant MR/W014386/1 |
Start Year | 2021 |
Description | Talk Life |
Organisation | Swansea University |
Department | Swansea University Medical School |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Research into the relationship of self-harm and social media images. |
Collaborator Contribution | Sharing of data (specifically images) for use in our research. |
Impact | Signed collaboration agreement for the sharing of data, in order to carry out a project on self-harm and social media images. Initial analyses completed, data algorithms being created. |
Start Year | 2019 |
Description | The Kooth - |
Organisation | Kooth Plc |
Country | United Kingdom |
Sector | Private |
PI Contribution | Data sharing agreement to store the data in accordance with data protection laws for the purposes of an analysis & academic collaboration project. |
Collaborator Contribution | Using data from an online support and counselling service in the UK for young people these are the research questions: i) Has there been a change in the number of contacts pre and post COVID-19?; ii) Has there been a change in the presenting complaints pre and post COVID-19 (incident cases)?; iii) Has there been a change in the referral source pre and post COVID-19?; and iv) Is there any evidence that any changes observed vary by ethnic minority status, gender and area level deprivation? |
Impact | Data sharing agreement. |
Start Year | 2020 |
Description | The Kooth - |
Organisation | Swansea University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Data sharing agreement to store the data in accordance with data protection laws for the purposes of an analysis & academic collaboration project. |
Collaborator Contribution | Using data from an online support and counselling service in the UK for young people these are the research questions: i) Has there been a change in the number of contacts pre and post COVID-19?; ii) Has there been a change in the presenting complaints pre and post COVID-19 (incident cases)?; iii) Has there been a change in the referral source pre and post COVID-19?; and iv) Is there any evidence that any changes observed vary by ethnic minority status, gender and area level deprivation? |
Impact | Data sharing agreement. |
Start Year | 2020 |
Title | Medichec Version 3 |
Description | Medichec is an app and website that supports prescribing in dementia particularly, but with relevance to older adults more generally, by collating information on known adverse effects of prescribed medications. Version 3, to be released in the next few months, now covers central anticholinergic effects, sedation, dizziness/drowsiness, bleeding risk, hyponatraemia, constipation, and QTc prolongation. |
Type | Support Tool - For Medical Intervention |
Current Stage Of Development | Refinement. Clinical |
Year Development Stage Completed | 2023 |
Development Status | Under active development/distribution |
Impact | Earlier versions of medichec are already accessed in all world regions and have become routine in many memory assessment services. |
URL | https://medichec.com/ |
Description | 'Do the Right Thing', Cochrane Theatre, Southampton Row, London. - 27th January 2019 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | debate regarding 'Do the Right Thing', Cochrane Theatre, Southampton Row, London. |
Year(s) Of Engagement Activity | 2019 |
Description | 20th Congress of EPA Section of Epidemiology & Social Psychiatry. - 8th September 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Industry/Business |
Results and Impact | conference for 20th Congress of EPA Section of Epidemiology & Social Psychiatry |
Year(s) Of Engagement Activity | 2022 |
Description | A PPIE group set up to review COVID-19 pandemic relevant research using local data |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | A PPIE group was set up with approximately monthly meetings over at least a 6-month period now. The purpose has been to review data-derived work of particular relevance for the COVID-19 pandemic in local mental healthcare. |
Year(s) Of Engagement Activity | 2020 |
Description | A presentation on mental healthcare informatics to a Danish research group |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | A presentation on mental healthcare data science and its opportunities and challenges to a large Danish research group and an invited wider audience. Lively discussion was stimulated. |
Year(s) Of Engagement Activity | 2022 |
Description | A presentation on mental healthcare informatics used to investigate loneliness post-pandemic |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A presentation to the Royal College of Psychiatrists Faculty of Old Age Psychiatry congress showing how mental healthcare data science resources were used to investigate loneliness and its correlates before and during the COVID-19 pandemic. Well attended and a good discussion afterwards. |
Year(s) Of Engagement Activity | 2022 |
Description | A symposium on mental healthcare data science |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | A chaired symposium, well-attended, at the European Psychiatric Association Section of Epidemiology and Social Psychiatry congress. Focused on mental healthcare data science, particularly that using electronic health records data, and stimulated lively discussion. |
Year(s) Of Engagement Activity | 2022 |
Description | APMS Academic meeting to discuss APMS data. - 10th June 2021 |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Meeting - APMS Academic meeting to discuss APMS data |
Year(s) Of Engagement Activity | 2021 |
Description | Conversation with member of UK-Electoral Commission about potential voting-related research in NI |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Conversation with member of UK-Electoral Commission about potential voting-related research in NI ... very fruitful conversation on process and application. |
Year(s) Of Engagement Activity | 2022 |
Description | DATAMIND/MQ Early Career Researchers Workshop. - 27th September 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | DATAMIND/MQ Early Career Researchers Workshop |
Year(s) Of Engagement Activity | 2022 |
Description | Datamind Industrial Forum, London. - 28th January 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Meeting/ conference - Datamind Industrial Forum, London |
Year(s) Of Engagement Activity | 2022 |
Description | European Public Health Conference. - 10th November 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | European Public Health Conference |
Year(s) Of Engagement Activity | 2022 |
Description | MQ DATAMIND Data Science Meeting. - 23rd march 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Meeting - MQ DATAMIND Data Science Meeting |
Year(s) Of Engagement Activity | 2022 |
Description | MQ DATAMIND ECR Workshop. - 28th April 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | MQ DATAMIND ECR Workshop |
Year(s) Of Engagement Activity | 2022 |
Description | MQ Data Science Meeting : Programming in Mental Health Research Workshop - September 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Workshop held by MQ Data Science meeting on Programming in Mental Health Research. |
Year(s) Of Engagement Activity | 2022 |
Description | MQ G2S online workshop. - 28th February 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | MQ G2S online workshop |
Year(s) Of Engagement Activity | 2022 |
Description | MQ Stakeholder Engagement & Communication Workshop. 1st June 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | MQ Stakeholder Engagement & Communication Workshop |
Year(s) Of Engagement Activity | 2022 |
Description | MQ book interview, MQ, London. - 10th January |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | MQ book interview, MQ, London |
Year(s) Of Engagement Activity | 2022 |
Description | Meeting with senior members of PSNI to discuss research related to firearms certificate holders |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Meeting with senior members of PSNI to discuss research related to firearms certificate holders. Small presentation followed by discussion of further analysis planned and possible policy implications |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation entitled 'Are people with poor mental health less likely to receive Disability Benefits? A population wide record linkage study' to conference in Venice |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Postgraduate students |
Results and Impact | Presentation entitled 'Are people with poor mental health less likely to receive Disability Benefits? A population wide record linkage study' to conference in Venice. A very lively discussion held.... |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation entitled... Data linkage, future directions, potential and challenges...to team responsible for review of NI Social Services for children |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Presentation trying to influence the team responsible for review of NI Social Services for children, in both our use of admin data and interest them in some of our findings. |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation to Welsh Government Education Policy: Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. - 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. Presentation to Welsh Government Education Policy Administrative Data Research Centres 2018 |
Year(s) Of Engagement Activity | 2023 |
Description | Presentation to Welsh Government health Policy: Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. - 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Presentation to Welsh Government health Policy: Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. - 2023 Administrative Data Research Centres 2018 |
Year(s) Of Engagement Activity | 2023 |
Description | Presentation to data scientists at the Public Health Agency (PHA) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Presentation to data scientists at the Public Health Agency (PHA)...this covered our current research activities and future strategic directions as well as a discussion of some of our (NI) data limitations. |
Year(s) Of Engagement Activity | 2023 |
Description | Presentation to inter-departmental Children's Champion Group on research activity esp related to the use of administration data |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | I presented our current research portfolio and plans relating to children to about 30 people who constitute the Children's Champion Group (a group led by the the NI Children and Young Persons Commissioner). Very positive response...desire to hear more! |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation to whole DataMind team entitled 'Road Builder Innovation 2: Discoverable excluded and under-served groups' |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | This was the first presentation of the work schedule and plans for this Road Builder and we made the case for why we needed to look at these groups and how we would achieve our aims. |
Year(s) Of Engagement Activity | 2023 |
Description | Public Launch of report on Mortality inequalities.Health Inequalities . ERSI 15th Sept 2022 |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Media (as a channel to the public) |
Results and Impact | Public Launch of report on Mortality inequalities.Health Inequalities I had to make a speech/response to the launch and field questions to the general audience and press. |
Year(s) Of Engagement Activity | 2022 |
Description | Speaker at the Bioethics Annual Conference 2022, University of Bristol. - 22nd March 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Conference Speaker at the Bioethics Annual Conference 2022, University of Bristol |
Year(s) Of Engagement Activity | 2022 |
Description | Speaker at the suicidal ideation webinar. - 31st March 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Speaker at the suicidal ideation webinar |
Year(s) Of Engagement Activity | 2022 |
Description | UK Biological Security Strategy Roundtable: Pandemics and Emerging Infectious Diseases. - 19th April 2022 |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Meeting regarding UK Biological Security Strategy Roundtable: Pandemics and Emerging Infectious Diseases |
Year(s) Of Engagement Activity | 2022 |
Description | Uses and availability of health data inn Ireland...public launch of report |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | Over 100 people attended (virtually) this ERSI-sponsored launch of the Report. I had to make a presentation/response and field questions. |
Year(s) Of Engagement Activity | 2022 |
Description | WHO Regional office for Europe on Big data analytics and AI in mental health- Talk on Using Big Data Analytics to address complex questions about mental health - 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | The Divison of Country Health Policies and systems at the WHO Regional office for Europe on Big data analytics and AI in mental health discussion about Using Big Data Analytics to address complex questions about mental health |
Year(s) Of Engagement Activity | 2022 |
Description | Wellcome Mental Health Data Prize - Data Science Support Workshop (Open Science). - 9th November 2022 |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Workshop - Wellcome Mental Health Data Prize - Data Science Support Workshop (Open Science) |
Year(s) Of Engagement Activity | 2022 |