Leveraging routinely collected and linked research data to study the causes and consequences of common mental disorders
Lead Research Organisation:
University of Edinburgh
Department Name: UNLISTED
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Technical Summary
Our vision is to link consented research studies and genomic resources with clinical and administrative data to create a structured secure infrastructure for studies into the causes and consequences of psychiatric disorders. Our ambition to implement this infrastructure across the whole of the UK.
We seek to accomplish our initial aims in Edinburgh, where there is world-leading health informatics, rich data resources covering the whole lifespan and a multidisciplinary environment with access to domain-specific knowledge and expertise. Our application builds upon key MRC and charitable investments, such as the Farr Network, HDR-UK, DPUK and important recent
developments in Edinburgh such as the Bayes Institute and the ‘City Deal’ (£1Bn funding).
A participant-unique NHS identifier is in universal use throughout Scotland, where there is existing and rapidly developing NHS and academic medical informatics capacity on which to build resources and expertise specifically in mental health. There are rich data resources, including prospective cohorts covering the whole lifespan, population-wide datasets, studies
covering specific patient and at-risk groups and developing biorepositories. This combination of
infrastructure and resources makes Edinburgh’s potential for mental health data science without
parallel in the UK.
An Edinburgh-based MRC Data Pathfinder award would facilitate a step-change in multidisciplinary mental health research, including collaborators and disciplines from throughout the UK. Our Pathfinder, in collaboration with other award holders, will form a major component
of a future UK Mental Health Platform.
We seek to accomplish our initial aims in Edinburgh, where there is world-leading health informatics, rich data resources covering the whole lifespan and a multidisciplinary environment with access to domain-specific knowledge and expertise. Our application builds upon key MRC and charitable investments, such as the Farr Network, HDR-UK, DPUK and important recent
developments in Edinburgh such as the Bayes Institute and the ‘City Deal’ (£1Bn funding).
A participant-unique NHS identifier is in universal use throughout Scotland, where there is existing and rapidly developing NHS and academic medical informatics capacity on which to build resources and expertise specifically in mental health. There are rich data resources, including prospective cohorts covering the whole lifespan, population-wide datasets, studies
covering specific patient and at-risk groups and developing biorepositories. This combination of
infrastructure and resources makes Edinburgh’s potential for mental health data science without
parallel in the UK.
An Edinburgh-based MRC Data Pathfinder award would facilitate a step-change in multidisciplinary mental health research, including collaborators and disciplines from throughout the UK. Our Pathfinder, in collaboration with other award holders, will form a major component
of a future UK Mental Health Platform.
Organisations
- University of Edinburgh (Lead Research Organisation)
- University College London (Collaboration)
- Administrative Data Research Centre for Scotland (Collaboration)
- NHS National Services Scotland (NSS) (Collaboration)
- Kings BRC (Collaboration)
- McPin Foundation (Collaboration)
- University of Dundee (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- Health Data Research UK (Collaboration)
- Cardiff University (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- Mayo Clinic (Collaboration)
- Tufts University (Collaboration)
- Medicines Discovery Catapult (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
People |
ORCID iD |
Publications
Adams MJ
(2020)
Genetic stratification of depression by neuroticism: revisiting a diagnostic tradition.
in Psychological medicine
Adams MJ
(2020)
Factors associated with sharing e-mail information and mental health survey participation in large population cohorts.
in International journal of epidemiology
Alex B
(2019)
Text mining brain imaging reports.
in Journal of biomedical semantics
Alex B
(2019)
Text mining brain imaging reports.
in Journal of biomedical semantics
Altschul D
(2021)
Generational differences in loneliness and its psychological and sociodemographic predictors: an exploratory and confirmatory machine learning study.
in Psychological medicine
Altschul D
(2019)
Leveraging Multiple Machine-Learning Techniques to Predict Major Life Outcomes from a Small Set of Psychological and Socioeconomic Variables: A Combined Bottom-up/Top-down Approach
in Socius: Sociological Research for a Dynamic World
Altschul D
(2020)
Blood pressure and cognitive function across the eighth decade: a prospective study of the Lothian Birth Cohort of 1936.
in BMJ open
| Title | My Depression, your depression - same name different stories |
| Description | During this project, in order to explore depression & mental illness from a variety of angles, digital stories were created by: - Researchers who study depression; - Adults with lived experience of depression; - Mothers of young people with mental illness; - Young people (16-25) who explored the topic of mental health and wellbeing. These stories (videos) can be viewed on the Patient Voices website: https://www.patientvoices.org.uk/mydepyourdep.htm Trigger warning: These stories talk about mental health and contain themes such as suicide. [Digital stories are short videos (2-6 minutes) created by bringing together a series of pictures or photos with a voiceover. All of the digital stories created for this project were made entirely by the individual, during a facilitated process with Patient Voices] |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | Our goal is to have these stories seen by as many people as possible. To this end, we aim to: Show them at public events to inspire others, and reduce stigma around depression Share them with policymakers and clinical staff to increase their awareness. Use them to bring a human perspective to scientific conferences and meetings. They have already been shown at screenings for researchers, PE professionals and public (see engagement activities section). |
| URL | https://www.patientvoices.org.uk/mydepyourdep.htm |
| Title | Risk and Resilience - stacking rings game |
| Description | The development of mental illness is rarely if ever, caused by a single risk factor. It is a complex set of interactions that researchers are still trying to understand. This game/simulation explores how some of these different risk factors may 'stack up' and lead to mental illness (in this case depression). It also demonstrates that recovery does not involve the removal of all risk factors, just sufficient changes to get people below their personal 'threshold'. It should be noted that the data behind this game comes from population studies of depression (i.e. generalised trends across thousands of people) and cannot be reliably attributed to any one individual. The game was first created as a physical wooden activity for use at in-person science festivals. An online simulation has also now been created |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | This online game will allow us to explore risk factors for depression with public audiences in an interactive way online. It will be used for online science festivals and to accompany other online activities. It has been designed so that the disease and risk factors can easily be altered by other projects to represent risk factors for other mental or physical health conditions. (Link to game to follow shortly). |
| URL | https://research.sc/participant/login/dynamic/2632CC38-4F0B-4C78-ABA4-15EA9E6C15F9 |
| Title | Risk game |
| Description | We have created a physical model and dice that convey the nature of genetic risk to psychiatric illness in general and depression in particular. |
| Type Of Art | Artwork |
| Year Produced | 2019 |
| Impact | We used this artwork to engage politicians (MSPs) in February 2019 at the MRC Scottish Parliament event and we will use the item again in April at the Edinburgh Science Festival |
| Title | Videos around data sharing, linkage and security |
| Description | We have prepared a series of videos, images and other materials around the safe use and linkage to non-research data that was collected from the NHS and other providers |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2018 |
| Impact | We have noted, through our web page, twitter channels, and you tube site, growing interest and engagement from the public |
| URL | https://mhdss.ac.uk |
| Description | Best practice checklist for mental health data science |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Description | Consultation on Digital Strategy for Scotland |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://consult.gov.scot/digital-directorate/digital-strategy-for-scotland/ |
| Description | Scottish Government consultation on the Digital Strategy for Scotland |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://consult.gov.scot/digital-directorate/digital-strategy-for-scotland/results/updateddigitalstr... |
| Description | Scottish Parliament Cross Party Group on Mental Health - Priorities for Data & Measurement |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.samh.org.uk/about-us/we-shape-policy/cross-party-group-on-mental-health |
| Description | The development of cognitive and emotional maturity in adolescents and its relevance in judicial contexts |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.scottishsentencingcouncil.org.uk/news-and-media/news/research-indicates-the-brain-does-n... |
| Description | (CoMorMent) - Predicting comorbid cardiovascular disease in individuals with mental disorder by decoding disease mechanisms |
| Amount | € 5,998,613 (EUR) |
| Funding ID | 847776 |
| Organisation | European Commission |
| Sector | Public |
| Country | European Union (EU) |
| Start | 01/2020 |
| End | 12/2023 |
| Description | CAHSS SFC ODA Global Challenges Internal Fund |
| Amount | £10,000 (GBP) |
| Funding ID | 01MacBeth CAHSS SFC ODA Global Challenges Internal Fund |
| Organisation | University of Edinburgh |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2019 |
| End | 10/2019 |
| Description | Clinician training partnership (4 PhD studentships) |
| Amount | £225,000 (GBP) |
| Organisation | Alzheimer's Society |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2019 |
| End | 08/2022 |
| Description | Enhancement of Generation Malawi |
| Amount | £216,000 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2022 |
| End | 03/2022 |
| Description | Exploiting genomic approaches to identify the environmental basis of depression |
| Amount | £2,530,384 (GBP) |
| Funding ID | 220857 |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 12/2025 |
| Description | Exploiting genomic approaches to identify the environmental basis of depression |
| Amount | £2,530,384 (GBP) |
| Funding ID | 220857/Z/20/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 06/2021 |
| End | 05/2026 |
| Description | Focussed Polygenic And Gene Expression Risk Scores For Schizophrenia And Impact On Brain Structure Across The Lifespan |
| Amount | £50,000 (GBP) |
| Organisation | British Medical Association (BMA) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 08/2023 |
| Description | Generation Malawi: A study of family, maternal and childhood mental health |
| Amount | £3,736,689 (GBP) |
| Funding ID | MR/S035818/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2019 |
| End | 01/2024 |
| Description | Generation Scotland:NextGenScot |
| Amount | £5,163,009 (GBP) |
| Funding ID | 216767/Z/19/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2019 |
| End | 09/2024 |
| Description | MR/X002608/1 |
| Amount | £300,000 (GBP) |
| Funding ID | MR/X002608/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2022 |
| End | 11/2024 |
| Description | Medical Research Council DTP Precision Medicine PhD |
| Amount | £90,000 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2020 |
| End | 09/2024 |
| Description | Mental health trajectories following pharmacological and psychological treatment |
| Amount | £40,000 (GBP) |
| Funding ID | 226686/Z/22/Z, |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2022 |
| End | 02/2023 |
| Description | My depression, your depression - same name, different stories |
| Amount | £65,600 (GBP) |
| Funding ID | 217078/Z/19/Z. |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2020 |
| End | 12/2020 |
| Description | Preterm birth, Neurodevelopment and Cognition in Children: Causal Evidence and Mechanisms |
| Amount | £2,500,000 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 12/2027 |
| Description | The Airwave Health Monitoring Study (AHMS). An Occupational Cohort Study of the British Police Forces. |
| Amount | £1,988,965 (GBP) |
| Funding ID | MR/R023484/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2018 |
| End | 06/2023 |
| Description | Turing Institute / HealTex grant (ESPRC) "Systematic review of text mining for radiology reports" |
| Amount | £8,200 (GBP) |
| Organisation | Alan Turing Institute |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 04/2020 |
| End | 09/2020 |
| Title | DNA Methylation Analysis of samples from Generation Scotland |
| Description | We have assessed the DNA methylation profile of ten thousand samples from Generation Scotland |
| Type Of Material | Biological samples |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | We have published more than 20 papers using these data, and contributed to several international consortia |
| URL | https://rdcu.be/b2sjv |
| Title | Attitudes to data sharing - UK-wide survey |
| Description | This is a dataset from Work Package 4 which contains approximately 1600 complete responses to a survey asking about attitudes to sharing (mental) health data. It includes participants from across the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | The dataset has supported publications associated with this Award. The dataset has also been used to develop an international survey which has generated an additional related dataset (currently in preparation). |
| URL | https://datashare.ed.ac.uk/handle/10283/4467 |
| Title | Mental Health of SHARE Scotland participants |
| Description | As part of the MRC Mental Health Data Pathfinder project we intend to distribute an online mental health questionnaire to individuals on the SHARE Scotland research register. This questionnaire will collect information on psychiatric symptoms, health behaviours, previous experiences of mental ill-health, medication experiences, etc. A database shell has been constructed in which responses will be collected. Records will be pseudonimised; random indexes have been assigned to each potential participant which can be matched to other SHARE records using a look-up table held securely by the Health Informatics Centre, The University of Dundee. The database will be made openly available when constructed. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | This database is being used to examine genetic and social predictors of mental ill-health, medication response, and sub-clinical symptomology. It will also be used to examine concordance of psychiatric diagnoses in medical records versus apparent diagnoses from questionnaire responses. |
| Title | Mental health and the Scottish Mental Survey 1947 cohort |
| Description | The historical research records of almost all individuals born in 1936 and attending a Scottish school in 1947 (age 11; N~70,000) has been linked to administrative birth records and routinely-collected health records. This captures all mental health-related hospitalisations since 1981 and all prescriptions since 2003. Such longitudinal data is allowing researchers to track mental health across older age for a large and representative cohort of individuals, and to examine the impact of childhood circumstances on later-life health. It is also being used to examine multimorbidity and polypharmacy in older age. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | This longitudinal dataset is allowing researchers to track mental health across older age for a large and representative cohort of individuals, and to examine the impact of childhood circumstances on later-life health. It is also being used to examine multimorbidity and polypharmacy in older age. |
| Title | Mental health within the family: A large, representative intergenerational cohort |
| Description | The spouses and children of almost all individuals born in 1936 and attending a Scottish school in 1947 (age 11; N~70,000) are being traced in historic marriage and birth records (made available by the Digitising Scotland project) to construct a large, representative and intergenerational cohort. Routinely-collected health and non-health data will be linked together for these individuals to reconstruct their life-courses, from birth to grave, at scale. Furthermore, we will use historical data and modern census data to reconstruct their family units and to parse their shared and non-shared family circumstances. This longitudinal intergenerational dataset will allow us to examine mental health trajectories within families and between generations, and to do so on an unprecedented scale. Using this dataset, we will identify the shared and non-shared factors which predict the transmission of mental ill-health, as well as the factors which predict resilience within individuals. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | This longitudinal intergenerational dataset will allow us to examine mental health trajectories within families and between generations, and to do so on an unprecedented scale. Using this dataset, we will identify the shared and non-shared factors which predict the transmission of mental ill-health, as well as the factors which predict resilience within individuals. |
| Description | Collaboration with Register for SHARE |
| Organisation | University of Dundee |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided expertise in the identification, epidemiology and measurement of mental disorders - particularly depression, anxiety and their treatment |
| Collaborator Contribution | Colleagues at NHS SHARE (https://www.registerforshare.org/) have provided materials, facilities and expertise to facilitate access to data on mental health problems across Scotland, the diversion of routine blood samples from NHS laboratories for research and navigating the necessary administrative and regulatory hurdles |
| Impact | We are currently planning a pilot and a full Scotland-wide rollout in 2019/2020 |
| Start Year | 2018 |
| Description | Collaboration with the Administrative Data Research Centre Scotland regarding the preparation and use of historic data |
| Organisation | Administrative Data Research Centre for Scotland |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Our team provided the initial cohort for use as a feasibility case for preparing, tracing and linking historic administrative data (e.g., birth records from 1935-1937). We also prepared methodological documentation and applications for ethical, public benefit and data controller approval. |
| Collaborator Contribution | The Administrative Data Research Centre Scotland have provided access to a project coordinator who has helped to prepare important documentation and has provided administrative support. |
| Impact | Project-specific research protocols Project-specific tracing and linkage methodology Ethical, public benefit and data access approvals |
| Start Year | 2018 |
| 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 | Comparison of NLP techniques for radiology reports |
| Organisation | Mayo Clinic |
| Country | United States |
| Sector | Charity/Non Profit |
| PI Contribution | All centres, including our own, have developed techniques for extracting phenotypes from radiology reports. Since it is difficult to share sensitive data, but important for determining comparability and transferability, there is an agreement to share the algorithms and to run on data from each site (sharing algorithms only and not data) |
| Collaborator Contribution | We have currently run the Tufts/Mayo programme on local data and are in the process of sending our systems for those sites to try our local processes on their data. |
| Impact | In progress |
| Start Year | 2019 |
| Description | Comparison of NLP techniques for radiology reports |
| Organisation | Tufts University |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | All centres, including our own, have developed techniques for extracting phenotypes from radiology reports. Since it is difficult to share sensitive data, but important for determining comparability and transferability, there is an agreement to share the algorithms and to run on data from each site (sharing algorithms only and not data) |
| Collaborator Contribution | We have currently run the Tufts/Mayo programme on local data and are in the process of sending our systems for those sites to try our local processes on their data. |
| Impact | In progress |
| Start Year | 2019 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | Cardiff University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | King's College London |
| Department | Institute of Psychiatry, Psychology & Neuroscience |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | Kings BRC |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | McPin Foundation |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Engagement with UK Mental Health Pathfinders and 3rd sector organisations |
| Organisation | University of Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research |
| Collaborator Contribution | The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research |
| Impact | Significant publicity and public engagement generated |
| Start Year | 2018 |
| Description | Health Data Research UK Sandbox Project |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Our project "Detecting antidepressant treatment response from prescribing data" was selected as a Use Case for the development of the Health Data Research UK Innovation Gateway. |
| Collaborator Contribution | HDR UK have developed a portal for discovering UK health data sets https://healthdatagateway.org |
| Impact | We have participated in workshops (Pistoia Alliance, 13 Nov 2019, London; UK Health Research Alliance Symposium, Feb 4 2020, London) to give feedback on the development of the Gateway Portal. |
| Start Year | 2019 |
| Description | NHS Service Division partnership on data linkage for mental health research |
| Organisation | NHS National Services Scotland (NSS) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We have contributed knowledge, expertise and time to the identification of methods for health data linkage - and public engagement and social licence for any activities undertaken |
| Collaborator Contribution | NHS NSS have contributed knowledge, expertise and time - including access to ethics and privacy committee reviews and advice. |
| Impact | We have received approvals for work streams within our MRC funded Pathfinder project |
| Start Year | 2018 |
| Title | EdIE-Viz |
| Description | Edinburgh Information Extraction Visualization for Radiology Reports |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Impact | This tool has resulted in one publication and several presentations and is one of the tools we use to showcase the work we do in the area of natural language processing for radiology reports. |
| URL | http://jekyll.inf.ed.ac.uk/edieviz/ |
| Title | EdIE-Viz, EdIE-R and EdIE-N code |
| Description | The code for the EdIE-Viz (Edinburgh Information Extraction Visualization for Radiology Reports) web demo: http://jekyll.inf.ed.ac.uk/edieviz/ This code contains EdIE-R, a rule-based system to extract information to brain imaging reports and label them with phenotypes. As well as EdIE-N, a neural version of the named entity extraction and negation detection steps for EdIE-R. |
| Type Of Technology | Software |
| Year Produced | 2020 |
| Impact | This demo has resulted in one publications, several talks and is used for demoing our work. |
| URL | https://github.com/Edinburgh-LTG/edieviz |
| Title | MethylDetectR: a software for methylation-based health profiling |
| Description | DNA methylation is an important biological process which involves the reversible addition of chemical tags called methyl groups to DNA and affects whether genes are active or inactive. Individual methylation profiles are determined by both genetic and environmental influences. Inter-individual variation in DNA methylation profiles can be exploited to estimate or predict a wide variety of human characteristics and disease risk profiles. Indeed, a number of methylation-based predictors of human traits have been developed and linked to important health outcomes. However, there is an unmet need to communicate the applicability and limitations of state-of-the-art methylation-based predictors to the wider community. To address this, we created a secure, web-based interactive platform called 'MethylDetectR' which calculates estimated values or scores for a variety of human traits using blood methylation data. These traits include age, lifestyle traits, high-density lipoprotein cholesterol and the levels of 27 blood proteins related to inflammatory and neurological processes and disease. Methylation-based predictors often return scores on arbitrary scales. To provide meaning to these scores, users can interactively view how estimated trait scores for a given individual compare against other individuals in the sample. Users can optionally upload binary phenotypes and investigate how estimated traits vary according to case vs. control status for these phenotypes. Users can also view how different methylation-based predictors correlate with one another, and with phenotypic values for corresponding traits in a large reference sample (n = 4,450; Generation Scotland). The 'MethylDetectR' platform allows for the fast and secure calculation of DNA methylation-derived estimates for many human traits. This platform also helps to show the correlations between methylation-based scores and corresponding traits at the level of a sample, report estimated health profiles at an individual level, demonstrate how scores relate to important binary outcomes of interest and highlight the current limitations of molecular health predictors. |
| Type Of Technology | Software |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | We have demonstrated proof of concept - that the software will provide potentially actionable information on disease risk and the presence of modifiable behaviours |
| URL | https://wellcomeopenresearch.org/articles/5-283 |
| Title | repository of NLP annotation tools for text based radiology reports |
| Description | Rule based and non rule based systems for extracting information from radiology reports, download contains: EdIE-N: A neural network system EdIE-R: A rule-based system EdIE-viz: Contains code to run theweb interface paper: Contains scripts related to extracting results and plots |
| Type Of Technology | Software |
| Year Produced | 2019 |
| Open Source License? | Yes |
| Impact | n/a |
| URL | http://jekyll.inf.ed.ac.uk/edieviz |
| Description | "Beautiful Brain" lecture at the Edinburgh International Conference Centre, March 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | https://www.eicc.co.uk/whats-on/eicc-live-beautiful-brain/ |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eicc.co.uk/whats-on/eicc-live-beautiful-brain/ |
| Description | Big Data Detectives - Edinburgh Science Festival Family Programme |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Our hands-on activities for families centred around how big data is being used in mental health research. Who is at risk of mental illness? What role do genetics and life-events play? Could genetic testing help doctors to prescribe you the right drug? We aimed to communicate 3 key messages: Activity1 : Communication of Risk - Genetic and environmental risk factors add together to increase your chance of becoming unwell. https://mhdss.ac.uk/news/19/09/18/talking-about-risk-and-resilience Activity 2: The opportunities offered by Big Data - If we can find patterns in big data, we might be able to split people into treatment groups. We know that not everyone responds to anti-depressants in the same way - could a genetic test be used in the future, to find out which drugs people would respond to best? https://mhdss.ac.uk/news/19/09/18/talking-about-stratified-medicine Activity 3: Activity 3 - The complexity of dealing with big data - Dr Data - computer game. A brand new card-swiping computer game, where you are the researcher in charge of the project and must try to Money, Staff, morals, privacy etc in balance https://mhdss.ac.uk/news/19/09/18/talking-about-big-data-research-processes Almost every member of the Pathfinder Research Team was involved in this event in some way - either during preparation, set-up or delivery. Several public engagement professionals (including those working in the National Museums Scotland where this activity was based), expressed an interest in the activities and invited us to future public/schools events. These leads are being followed up. Members of the public opened up and discussed mental health, risk and resilience in ways that they claimed not to have done so before. Children and adults alike reported learning new information about what research is currently ongoing and how the research process works. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://mhdss.ac.uk/news-and-events |
| Description | Big Data Detectives - Midlothian Science Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Our hands-on activities for families centred around how big data is being used in mental health research. Who is at risk of mental illness? What role do genetics and life-events play? Could genetic testing help doctors to prescribe you the right drug? We aimed to communicate 3 key messages: Activity1 : Communication of Risk - Genetic and environmental risk factors add together to increase your chance of becoming unwell. https://mhdss.ac.uk/news/19/09/18/talking-about-risk-and-resilience Activity 2: The opportunities offered by Big Data - If we can find patterns in big data, we might be able to split people into treatment groups. We know that not everyone responds to anti-depressants in the same way - could a genetic test be used in the future, to find out which drugs people would respond to best? https://mhdss.ac.uk/news/19/09/18/talking-about-stratified-medicine Activity 3: Activity 3 - The complexity of dealing with big data - Dr Data - computer game. A brand new card-swiping computer game, where you are the researcher in charge of the project and must try to Money, Staff, morals, privacy etc in balance https://mhdss.ac.uk/news/19/09/18/talking-about-big-data-research-processes Members of the public opened up and discussed mental health, risk and resilience in ways that they claimed not to have done so before. Children and adults alike reported learning new information about what research is currently ongoing and how the research process works. Master's students and PhD students gained experience of public engagement. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://mhdss.ac.uk/news-and-events |
| Description | British Neuroscience Association - Bring your own brain. My depression, your depression - same name different stories. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | "My Depression, Your Depression - Same Name, Different Stories" explores depression from different angles through storytelling, to increase awareness and reduce stigma. At the event, the audience were presented with short digital stories, written, narrated, and edited by people with lived experience of depression and scientists researching depression. Afterwards, at a live Q&A, there was an opportunity to ask questions to the storytellers and organisers about the stories, the project, and the process. The event provided an insight into the complex and unique experience of living with depression as well as the difficulties and opportunities present in depression research. The project was a collaboration between the University of Edinburgh, Patient Voices, and RealTalk. Word clouds were used to collect one word responses from the audience, which included terms such as hopeful, encouraging, moving, inspiring, honest, humbled, resilient. An optional 'postcard to self' option after the event included responses such as - I want to remember that things get better from here. I also want to represent my life and experiences creatively. - Think of others' mental health, and take a moment every week to think about your own too. - Just trust yourself and take every opportunity. You can't know whole things |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://meetings.bna.org.uk/BYOBonline/my-depression-your-depression/ |
| Description | Celebration of Scottish Health Research Cohorts |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | We held a celebration of Scottish health cohort research by inviting members of the Lothian Birth Cohorts, Theirworld Edinburgh Birth Cohort, The Edinburgh High Risk Studies of Schizophrenia and Mood disorders and Generation Scotland to a day of focus groups and pubic lectures. The work, which featured in the MRC's own publications in late 2018, including surveying participants and accompanying family members about their attitudes to sharing health data with health practitioners, researchers and industry. We also identified whether people were keen to share data generated from their Guthrie (heel prick) cards, that have been stored in Scotland from the 1970s |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://www.youtube.com/playlist?list=PLNKgsEbom_ZeNu7fsX75Ed5YzmfbLjBD3 |
| Description | Depression Detectives |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Depression Detectives was a [pilot] user-led citizen science project which ran between Feb-Sep 2021. It brought together people with lived experience of depression, and researchers who study it, as EQUAL partners. We wanted to make depression research better by listening to and working with non-scientists and putting lived experience at the heart of research. https://blogs.ed.ac.uk/depressiondetectives/ Just under 100 people joined the project Facebook group, 1/3rd of whom were researchers and 2/3rds were people with lived experience. Depression Detectives participants quizzed real live scientists and discussed where there were gaps in the research. These Q&As were written up for the project blog and disseminated via social media. https://blogs.ed.ac.uk/depressiondetectives/online-qas-2/ The group then designed their own research study, and ran it together with researchers. They chose the question: "Do people report all episodes of depression to their GP? And if not, why not?" The group undertook a survey (26 people answered) and some focus group discussions within their Facebook group. A PhD student also looked at UK Biobank data on their behalf. The results have been written up as a report: https://blogs.ed.ac.uk/depressiondetectives/our-results/ And a series of infographics for different audiences (GPs, Researchers, Patients and policymakers) - https://blogs.ed.ac.uk/depressiondetectives/2022/01/07/infographics/ We are in the process of disseminating these infographics and results. Provisional results were already presented at an MQ meeting and there was a lot of interest from data science researchers in both the process and the results. The project was also presented at an MRC Scottish Comms meeting and again was well received, with several PE staff considering the online Q&A format as a future engagement tool. The results have also made our own research team consider how best to interpret the GP data that they work with. Evaluation Extracts from interviews with 4 participants (whose active involvement in the project varied). - All of the participants spoke about their realisation that depression is more complex than they had realised. - "I really liked this approach, it is so innovative and democratic." - 'Jack' said that taking part in this citizen-science project taught him a lot about how research is done and all the steps that need to be considered. It made him feel more motivated to read research literature, and he felt that, through the project, he had developed a more critical perspective on different kinds of research and their limitation - 'Jack' said that he would approach health-care providers differently now. He particularly highlighted that if he was talking to a doctor again, he would mention complexities of his depression or any comorbidities, rather than simplifying the problem, and that he would also take more time and consideration about which treatments he would choose: - Although Depression Detectives was not designed as a peer support project (this was outlined in the guidelines), participants still benefitted immensely from sharing their experiences with others and from listening to each other's stories. - All interviewees said that they would take part in a project like Depression Detectives again, and that they would recommend taking part Extracts from participants survey (14 responses) - I liked the way that participants were involved in at an early stage. It felt like we had more influence and choice because of this. It's much more meaningful to involve people early in the project, before major decisions have been made. (Higher level of participation/ involvement.) - in the future absolutely I feel better equipped and a bit more confident to question things - Yes, the project did more than meet my expectations. The enormous wealth of knowledge on depression helped me understand the various manifestations of the illness, i.e. Genetic, episodic, major depression, bipolar disorder, chronic recurring episodic depression. Extracts from Researchers Survey - Really useful to get the opinions of people with lived experience over time - better than just having one or two meetings. It's an excellent public engagement strategy and I hope it will continue in some way. - we discovered things that researchers might take for granted are unknown by the public and vice versa. - Insightful directions for future research. - I realise that there are a lot more practical questions about how to treat depression rather than what may cause depression. I think it is sensible to consider bringing more translational aspects to our research. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://blogs.ed.ac.uk/depressiondetectives/ |
| Description | Depression Study and Glad Launch - media activity |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | The study was covered on: BBC 1 Scotland, BBC Radio Scotland Newsdrive (x 2), STV News, Heart FM, West Sound Radio, Radio Borders and Forth FM In various newspapers (Pure link to follow) And also online: https://www.bbc.co.uk/news/uk-scotland-47118009 https://www.thetimes.co.uk/article/gut-bacteria-linked-to-mental-health-kfx2fvp39 https://inews.co.uk/news/gut-bacteria-may-have-an-impact-on-our-mental-health/ https://www.heraldscotland.com/news/17407967.hundreds-of-new-depression-genes-identified-in-huge-edinburgh-led-study/ https://www.thenational.scot/news/17408170.scottish-scientists-link-genes-to-depression/ https://www.technologynetworks.com/tn/news/neuroticism-could-lead-to-depression-says-largest-ever-genetic-analysis-314935 This was followed up with additional social media posting (including videos) for the GLAD launch at the end of Feb. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Depression talk to Department of Work and Pensions |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Discussion about depression, its causes and consequences, how it is managed - including how it is managed in the workplace. Discussed the need for more research, giving the Airwave study as an example, and the need to access routinely collected administrative data as part f HDR UK activities such as DATAMIND |
| Year(s) Of Engagement Activity | 2022 |
| Description | Digital Stories Screening and discussion with the NHS Learning Disability Service (Edinburgh) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | My depression, your depression - same name different stories - see first-person digital stories at: https://www.patientvoices.org.uk/mydepyourdep.htm Screening and discussion with the NHS Learning Disability Service (Edinburgh) during their 'journal club'. 10th June 2022. An audience of clinicians and postgraduate students. The audience reported finding the stories very emotional and a great insight into the lives of their patients. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.patientvoices.org.uk/mydepyourdep.htm |
| Description | Digital Stories project presentation and screening as part of Breaking down Boundaries with citizens: Una.Resin webinars series |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation (online) about the organisation and running of the My depression, your depression - same name project accompanied by a screening of some of the digital stories. Audience: Public Engagement Professionals and researchers with a public engagement remit. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.una-europa.eu/about/una.resin |
| Description | Digital stories screening and discussion with NHS Fife Psychiatrists and clinicians |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | My depression, your depression - same name different stories project created a set of first-person narrative videos of experiences of mental illness (see https://www.patientvoices.org.uk/mydepyourdep.htm) This screening was to Clinicians and postgraduate students. During the discussion the audience commented that they should watch videos like this regularly, to remind themselves of their patient's points of view and to help them see their patients as 'whole' people with complex lives. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.patientvoices.org.uk/mydepyourdep.htm |
| Description | Digital stories screening as part of Scottish Mental Health Arts Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | My depression, your depression - same name, different stories was a project which created a set of digital stories of mental illness. These can be viewed online at: https://www.patientvoices.org.uk/mydepyourdep.htm This event was part of The Scottish Mental Health Arts Festival We screened 2 mothers' stories, 1 researcher's story and 1 story created by our Knowledge Exchange Officer during the COVID lockdown. As well as the first-person narratives, these videos also included artwork that was created by the individuals themselves. Slido was used to collect views on well-being, small acts of bravery, and attitudes towards personalised medicine. The Q&A and discussion that followed the screening was wide-ranging, including the mental health benefits of art and the need to support the parents of young people with mental illness. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.mhfestival.com/ |
| Description | Doors Open Day Edinburgh |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Hands-on activities on the topic of Mental Health Data research were presented at this very popular open day, which was hosted by MRC research centre IGMM. Stratified medicine - paper chain people activity Risk and resilience - disc stacking game Dr Data - card swiping computer game. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.ed.ac.uk/igmm/news-and-events/events/latest-events/igmm-doors-open-day-2019 |
| Description | Dundee Science Festival |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Dundee Science Festival Online - presented Stratified Medicine (Paper Chain people) activity https://www.dundeesciencefestival.org/2020-11-19-stratified-medicine-finding-the-right-medican-for-you and Dr Data (online card swiping game). https://www.dundeesciencefestival.org/2020-11-19-dr-data-big-data-project |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.dundeesciencefestival.org/2020-11-19-dr-data-big-data-project |
| Description | Edinburgh Neuroscience public lecture "An alternative Christmas Carol" Dec 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | https://www.eventbrite.co.uk/e/edinburgh-neuroscience-public-christmas-lecture-2022-tickets-469814175847 |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eventbrite.co.uk/e/edinburgh-neuroscience-public-christmas-lecture-2022-tickets-46981417... |
| Description | Engagement with Scottish Parliament MSPs |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The event showcased the work of the Medical Research Council (MRC) in Scotland. It brought together researchers from across the country into one place to talk with MSPs and other sector stakeholders about their work, the impact it is having in Scotland, the UK and beyond. The event opened with speeches from Lewis Macdonald MSP (who hosted the event), Richard Lochhead MSP and Professor Fiona Watt, MRC Executive Chair. During the event MSPs, key government officials and other sector stakeholders were able to explore the different exhibition stalls, speak to researchers and learn about the impact of their work. At our stand, we engaged directly with many MSPs including the Minister for Mental Health and the Minister for Sport. We held productive conversations and follow-on meetings were arranged. The event provided an opportunity to increase understanding amongst MSPs of the MRC's strategic vision and the leading role it plays in improving human health, innovation and economic growth by seeing first-hand the research that is taking place and the researchers that make it happen. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.parliament.scot/visitandlearn/104642.aspx |
| Description | Explorathon online events programme - Love, Heartache and Hope |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Over the last few months, Patient Voices have been working with parents of young people with mental illness and researchers who study these conditions, helping them both to transform their experiences into powerful digital stories. At this event, we will show some of these digital stories, give some space for reflection and response, then open to the floor for questions. This event is being run by The University of Edinburgh in association with Parenting Mental Health, a charity that works with parents of young people with mental health issues in the UK, USA, Australia, Canada, and New Zealand. These digital stories are part of a larger project, led by Dr Iona Beange from the Division of Psychiatry at The University of Edinburgh, which aims to give a voice to a range of people affected by and involved with mental illness. 1 x PhD student presented her digital story and joined in the discussion. Responses to each story from the public viewers were collected as a word cloud. Responses included amazing, powerful, emotional, thought-provoking, resonates, informative, challenging, inspiring, inspirational. An optional 'postcard to self' after the event collected responses such as: - Reach out; there is hope; it isn't your job to fix him; ride the wave; connect with those who are living it; hang on. - Recovery is possible - Stay strong, you are not alone. You will get through this |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.explorathon.co.uk/events-programme/patient-voices-my-depression-your-depression/ |
| Description | Festival of tomorrow: Stratified Medicine - which medicine is right for you? |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | In the future, doctors may use DNA tests to help them decide which medicine to prescribe. This process of splitting people into different treatment groups is called 'stratified medicine' In this activity, people followed a video that showed them how to make their own paper-chain-people. They then gave their paper people some DNA (stickers or dots) and used the pattern to help them decide which medicine would work best for that person. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.festivaloftomorrow.com/ |
| Description | Fun Palaces Scotland |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Fun Palaces Scotland Online Listing - Stratified Medicine (paper chain people) activity - listed as a description of activity, brief description of the science and a link to a website for more information. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://funpalaces.co.uk/fun-palace/stratified-medicine-which-medicine-is-right-for-you-fun-palace/ |
| Description | Global Science Show |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | A slot in the Global Science Show (Twitter campaign) to talk about the links between Mental and Physical Health. |
| Year(s) Of Engagement Activity | 2020 |
| Description | HDR UK Schools Engagement |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | Presentation of the Dr Data / Pathfinder tablet game to ~50 S6 students. Part of the Health Data Research UK Summer School. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://intheloop.newsweaver.com/intheloop/qzlc4so882ajn8av8q7r72?email=true&a=1&p=427063&t=18030 |
| Description | MQ Data Science Report to MRC on building a National Infrastructure for Mental Health Data Science in the UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | In collaboration with MQ (mental health charity), we organised a meeting for researchers and other stakeholders involved in Mental Health Data Science. Amongst the presentations, was one by Sue Fletcher-watson, who presented some of our preliminary results from our Pathfinder data research opinion survey. In addition, our Knowledge Exchange Officer Iona Beange organised a discussion session, asking participants how they would envision a National Infrastructure for Mental Health Data Science. Participants were advised that their collected input would be fed back to the MRC to serve as a starting point for their full consultation on this topic. A formal report was written, given a d.o.i and delivered to the MRC. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://twitter.com/i/events/1174320277322457096 |
| Description | MRC Insight Blog - Depression Detectives (Citizen Science project) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Working together to improve depression research This Blog post described the Depression Detectives Project and was featured on the MRC Insight Blog in May 2022 as part of Mental Health Awareness Week. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.ukri.org/blog/working-together-to-improve-depression-research/ |
| Description | Midlothian Science Festival (online) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | Online Science Festival. Activities offered that pupils could do in schools or at home with their families. Activities were listed on a Padlet board. The Padlet board was advertised to relevant audiences by the Festival organisers. The two activities we listed were: Dr Data Card Swiping Game - https://simmer.io/@DrB/drdata Paper Chain People (stratified medicine) activities - https://mhdss.ac.uk/news/19/09/18/talking-about-stratified-medicine |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://padlet.com/EBSOC/MSFschools2020 |
| Description | My depression, your depression - same name different stoires (Digital Stories) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | [This entry is for the facilitated creation. The actual videos themselves are listed in Artistic and Creative products section) During this project, in order to explore depression & mental illness from a variety of angles, 4 groups of people took part in a facilitated process with our partner Patient Voices, to create their own digital stories: - Researchers who study depression; - Adults with lived experience of depression; - Mothers of young people with mental illness;(in collaboration with Parenting Mental Health charity) - Young people (16-25) who explored the topic of mental health and wellbeing. (In collaboration with Glasgow Clyde College and Princes Trust) These stories (videos) can be viewed on the Patient Voices website: https://www.patientvoices.org.uk/mydepyourdep.htm Trigger warning: These stories talk about mental health and contain themes such as suicide. [Digital stories are short videos (2-6 minutes) created by bringing together a series of pictures or photos with a voiceover. All of the digital stories created for this project were made entirely by the individual, during a facilitated process with Patient Voices] (Other entries where the digital stories have been shown at festivals/events are listed under engagement activities). |
| Year(s) Of Engagement Activity | 2020,2021 |
| URL | https://www.patientvoices.org.uk/mydepyourdep.htm |
| Description | My depression, your depression - same name different stories, Walking tour at Edinburgh Science Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | The digial stories from the My depression, your depression - same name, different stories project were presented as walking tour around the meadows in Edinburgh (Atlhough they could be viewed from anywhere - even from home). |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://arcg.is/0rW4jm |
| Description | National Stem Club - DNA and Medicines - paper chain people |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The national STEM Club provides an opportunity for young people, families and schools to take part in club sessions provided by STEM Learning. Schools and families can engage in practical and hands-on STEM activities that support curricular learning within a club style environment. Boosting understanding and knowledge of STEM topics. In this activity, you will learn about DNA and the research into how DNA could lead to doctors prescribing particular medicines based on people's individual DNA make up. Helping to ensure they get the best treatment possible. YouTube video: https://www.youtube.com/watch?v=6r2Zj_a3hYs Downloadable Activity Guide https://www.stem.org.uk/sites/default/files/pages/downloads/Session%205%20national%20STEM%20Club%20activities.pdf |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=6r2Zj_a3hYs |
| Description | Orkney Science Festival - Walking Tour - My depression, your depression - same name, different stories |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | The digital stories created during the My Depression, your depression - same name, different stories project, were presented as a walking tour around Kirkwall, Orkney (but could also be accessed from anywhere - even from home). |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://storymaps.arcgis.com/stories/1de63957b36346ad8d785baaaaf37332?utm_source=UoEdbn&utm_medium=w... |
| Description | Poster presented at Edinburgh Open Research Conference - Depression Detectives |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster about Depression Detectives presented at Edinburgh Open Research Conference. A video version was also presented online. Collaborator Sophia Collins (Independent Public Engagement Consultant) collaborated with Iona Beange (University of Edinburgh) on the poster design and attended to assist with its presentation. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://edopenresearch.com/edinburghopenresearchconference/ |
| Description | Presentation and group discussion - ADRC-S Public Panel |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | We presented information on the intended data linkage study and methodology to the Administrative Data Research Centre Scotland's Public Panel, consisting of informed lay individuals. Around 10 people were in attendance, of various ages and backgrounds. The activity also included discussion on the purpose of data linkage for research, as well as individual's attitudes and opinions on the use of historic and health data for research purposes. Panel members also provided useful suggestions which have helped inform future engagement strategy. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Presentation and group discussion - Stakeholder Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | We presented information on the intended data linkage study and methodology to Edinburgh's Mental Health Data Pathfinder Stakeholder Advisory Group, consisting of informed lay individuals, patients, and related third sector workers. Around 8 people were in attendance, of various ages and backgrounds. The activity also included discussion on the purpose of data linkage for research, as well as individual's attitudes and opinions on the use of historic and health data for research purposes. Panel members gave feedback regarding the proposed methods and asked further questions about the possibilities of health data linkage in Scotland, as well as the governance surrounding access to such data. Panel members also provided useful suggestions which have helped inform future engagement strategy. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Risk and Resilience Hands-on activity at Reception before evening talk |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | A hands on activity exploring risk and resilience of depression/mental illness was presented during the Mind and Body in (Dis)harmony event Adult audience reported lots of 'a-ha' moments as they worked through the activity. |
| Year(s) Of Engagement Activity | 2010,2022 |
| URL | https://www.ed.ac.uk/usher/advanced-care-research-centre/news/thought-provoking-engagement-from-mind... |
| Description | University of Edinburgh, College of Medicine and Veterinary Medicine, Public Engagement Forum |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented an overview of the 'My Depression, your depression - same name different stories' project to Public Engagment Professionals https://www.patientvoices.org.uk/mydepyourdep.htm and hosted a discussion afterwards. During discussion afterwards several PE professionals were interested in undertaking a similar project. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.patientvoices.org.uk/mydepyourdep.htm |
| Description | Videos describing Research (YouTube) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | MHDSS YouTube channel which contains: a) Videos which describe the research in an accessible way b) Videos and animations which were used for recruitment to survey on opinions on big data research. c) Videos describing the brand-new public engagement activities that were created for the project |
| Year(s) Of Engagement Activity | 2018,2019 |
| URL | https://www.youtube.com/channel/UCdh0g1F-WBu-_yRwy9sRjKg/videos |
| Description | Visit by Jeane Freeman, Cabinet Secretary for Health in Scotland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Hosted by Professor Andrew McIntosh, the Cabinet Secretary met MRC researchers working on the MRC Mental Health Data Pathfinder award and the Generation Malawi project, both based at the University of Edinburgh. The Cabinet Secretary, was welcomed by Vice Principal, Professor Jonathan Seckl, and heard from researchers about how the Scottish Government can support researchers in the vital work they are doing, for example by improving access to data. Ms Freeman said: "These two projects being funded by the MRC are important. Improving mental health is a priority for the Scottish Government and research looking at the causes and consequences of mental health conditions, both in Scotland and abroad, is crucial." In genuine two-way dialogue, the cabinet secretary not only heard about the two projects but was also able to offer her advice and input to the researchers. She recommended several people that the researchers should contact, and these suggestions are being followed up. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://mhdss.ac.uk/news/19/08/9/visit-jeane-freeman-cabinet-secretary-health-scotland |
| Description | Visit from Dr Catherine Calderwood, Chief Medical Officer for Scotland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Dr Catherine Calderwood, Chief Medical Officer for Scotland, visited Mental Health researchers at the University of Edinburgh in January to hear about the projects the team is working on in Scotland and Malawi. She was welcomed and accompanied on the visit by The Principal of the University of Edinburgh, Professor Peter Mathieson. The researchers were keen to impress upon Dr Calderwood the importance of Big Data Science to the future of mental health research. Dr Calderwood replied: "The time is now to talk about this. Everyone has Mental Health." High on the agenda at the meeting was the pending public consultation around the use of Guthrie Cards [newborn blood spots] for research. The researchers asked Dr Calderwood to lend her support towards further action which would allow this wealth of blood and DNA data to be used to improve healthcare for all. Dr Calderwood indicated a change in her view and a desire to expedite this consultation. Dr Calderwood also mentioned her upcoming visit to Malawi and a desire to visit our researchers who are based there. We will continue to liaise with her team to arrange this. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://mhdss.ac.uk/news/20/02/27/chief-medical-officer-scotland-visits-researchers |
| Description | What Puts People at Higher Risk for Loneliness |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Article and infographic in Pscyhology Today |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.psychologytoday.com/us/blog/reverse-causation/202004/what-puts-people-higher-risk-loneli... |
| Description | What does Knowledge Exchange look like for a data science project? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Presentation at MQ Data Science Meeting on 4th December. Follow up emails and offers for collaboration on future KE /PE efforts were recieved. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.eventbrite.co.uk/e/mq-data-science-meeting-tickets-124984801907?aff=# |
| Description | Why include a knowledge exchange officer in your team? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Presentation at CCBS, University of Edinburgh Open Day (local academic event) to promote public engagement. Several follow up emails and conversations about including public engagement in future work. |
| Year(s) Of Engagement Activity | 2020 |
| Description | World Heart Day |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Tweets for #WorldHeartDay demonstrating the link between physical and mental health |
| Year(s) Of Engagement Activity | 2020 |
| Description | World Mental Health Day |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Tweets for #WorldMentalHealth Day |
| Year(s) Of Engagement Activity | 2020 |