Utilising Big Data in the Practice of Torture Survivors' Rehabilitation

Lead Research Organisation: University of Essex
Department Name: Computer Sci and Electronic Engineering

Abstract

Many third sector and charitable organisations routinely collect information on those using their service but often are not able to fully use this information to improve the service they offer. This is due to the way in which the information is collected and recorded which, while suitable for some purposes, does not enable easy interrogation of the data to fully understand how their service is being delivered and where it could be improved. There is also scope to link the data held by charities to other national and international data sources to provide an opportunity for a much deeper analysis and understanding. This project will explore the feasibility of carrying out these linkages while protecting the confidentiality and rights of the victims themselves.

For this project a charity concerned with the rehabilitation of victims of torture, Freedom from Torture, has partnered with the University of Essex to explore how the data they collect and hold can be re-structured and cleaned to make it suitable for research and analysis. Freedom from Torture (FfT) is a national charity established in 1985 and has grown to have centres in London, Manchester, Glasgow, Birmingham and Newcastle and a service in Yorkshire and Humberside. They provide services to over 1,000 survivors of torture a year, who reside in the UK, most of whom are asylum seekers or have been granted some form of international protection. Their clients have experienced serious abuse and trauma and have complex needs and FfT prioritises helping those whose needs cannot be met by the National Health Service (NHS), social services or other voluntary sector organisations. FfT also provides other organisations that offer health and social care services with support for training, capacity building and promoting awareness of the unique needs of torture survivors. The work FfT carry out is informed by the experiences and voices of survivors of torture who access their services and FfT involve clients and former clients at every level through Service Users groups. FfT provides holistic care for each individual client and family following a comprehensive needs assessment. This approach embraces crisis intervention, long term rehabilitation, practical assistance, and / or the preparation of medico-legal reports which forensically document torture related injuries.

Freedom from Torture's overall strategic aims are:(1) Rehabilitation: That survivors of torture in the UK realise their right to as full rehabilitation as possible; (2) Protection: Survivors of torture in the UK receive effective protection and are not returned to their countries of origin to face the risk of further torture; (3) Accountability: States responsible for torture are held to account publicly and the human rights of survivors are guaranteed nationally and internationally.

With these aims in mind this project will also explore how the Freedom from Torture information can be linked with other external data sources such as geograhical information or international information on human rights. We will explore what data can be made available in anonymised form to users in the third sector, academic and social policy researchers while protecting the identity and confidentiality of the victims themselves. A major aim of the project is to provide a data infrastructure that will support the development of best practice in the delivery of cost-effective and successful social support and therapeutic treatments for victims of torture. The project will therefore feed into many policy debates about how services are delivered and the best practice standards that should be applied. Being a victim of torture is a traumatic and scarring event in people's lives and supporting their recovery and rehabilitation in the best way possible underlies the core activities of this project.

Planned Impact

Non-academic beneficiaries of this project include a range of third sector organisations and individuals, operating at several levels both national and international. The direct impacts on beneficiaries could be rapid, not least victims of torture themselves who are supported by Freedom from Torture. Other campaigning organisations concerned with supporting victims of torture will have access to data that can help them adapt their strategies for providing support. Impact on policy debates on asylum and immigration could be rapid, as at present there is limited availability of data with which to understand the outcomes of victims of torture after arrival in the UK.
Key beneficiaries are:
1) Third sector organisations and charities concerned with supporting victims of torture including The International Rehabilitation Council for Torture Victims, an organisation similar to Freedom from Torture with members all over the world: www.irct.org
2) Policy makers concerned with the allocation of resources e.g. through the NHS and social services to support victims of torture on arrival in the UK and through their rehabilitation.
3) Organisations litigating cases on behalf of torture survivors and dealing with asylum issues: REDRESS, AIRE Centre, OMCT, EHRAC and organisations working with victims of other types of violations such as trafficking in human beings
4) Organisations that carry out research on torture: APT, Amnesty International, Human Rights Watch, European Council on Refugees and Exiles
3) Health professionals, practitioners and organisations responsible for supporting victims of torture and working on rehabilitation and access to social services including Helen Bamber Foundation, Refugee Council, Refugee Action (and related organisations), Red Cross, Children's Society, Barnardos.
4) Academic and social policy researchers will benefit from having access to data not previously available to them in a standardised format suitable for analysis and with the potential to link to other external data sources.
5) Freedom from Torture will benefit directly as an organisation through improvements in the quality of the data they collect and hold and the development of a data infratructure suitable for analysis and generating evidence-based policy and practice. The collaboration with academic researchers will build their capacity to utilise data in a novel way and extract new information to support their policy-making processes and service delivery.
6) Local government, county, borough and unitary authorities in the UK who are responsible for providing services to support victims of torture on arival in the UK. The efficient use of data sources should have considerable impacts on practice in the provision of services within a mixed economy of provision.
7) Government department researchers and policy makers. The likely impact is significant as new ways of utilising Big data in this area are developed.
8) At the European level: the Committee for the Prevention of Torture and Common European Asylum System
9) At international level: Various parts of the UN focusing on torture and refugee issues including the UN Voluntary Fund for Victims of Torture, UN Special Rapporteur on torture, Committee against Torture, High Commissioner for Refugees.
 
Description The primary objective of the project was to work together with the charity Freedom from Torture (FfT) as part of the Civil Society Data Partnership round of Big Data related funding supported by ESRC, in order to support them in the development of their data infrastructure, their capacity to make good use of their existing data, and in considering future needs and requirements for future-proofing their data infrastructure. Academic researchers spanning multiple academic departments worked together with researchers, clinical staff and others in FfT to deliver the project objectives.
The work within the project has resulted in a better shared understanding at FfT of (i) the fundamental importance of the quality of their data and data infrastructure for all areas of their work; (ii) the legal and ethical obligations around data protection and the collection, management and use of their data; (iii) and that issues related to information management, data and their data infrastructure are interconnected and always connect with wider, underlying organisational issues.
A key objective of the project was to begin the process of improving the data infrastructure and the quality of the data captured and maintained in order that it can be used by FfT and potentially others for research, and used more effectively in their operational work, to help them meet their strategic objectives. In doing so, the Academic Team developed and tested novel methods to mine and extract insights from the data and support staff and clinicians. The Academic Team also supported FfT in considering and taking concrete steps to improve the underlying data infrastructure and future-proof it in order to support and improve their operations and effective treatment of their clients. This also included the processing and use of unstructured data and also the ability to link their work with other external datasets. The work included the development of a prototype tool that incorporates artificial intelligence technology, for more efficient extraction of data from different forms and types of information held in the FfT database and elsewhere, and the testing of a new form of (no-SQL) database technology that would be more appropriate in terms of handling different types of data and linking with external datasets.
In addition, the Project team engaged more widely with organisations such as the International Rehabilitation Council for Victims of Torture (IRCT) and their Data in the Fight against Impunity project (DFI) and disseminated the learnings of the project.
Exploitation Route There are two areas where the findings may be taken forward by others. Firstly, the project provides useful insights in issues around data capture and management in the context of a Civil Society Organisation which would be of interest to other such organisations. Although Civil Society Organisations are distinct and their foci and mode of operation may vary, there are some useful lessons learnt with regards to the importance of on the one hand, capturing the appropriate data, but also ensuring that data is used correctly and sensitive and confidential data is safeguarded to protect individuals. Such organisations typically lack the resources to undertake a review of their infrastructure and consider ways to improve it, and the project provides useful insights on future-proofing infrastructure to enable efficient management of structured/unstructured data and linkage with external to an organization datasets.
Secondly, the methods developed as part of this project may have wider applicability beyond the domain that we have used to demonstrate them. We have shown how insights can be drawn from unstructured data through (i) separating the domain from the operational knowledge; and (ii) developing a novel method to mine and learn from unstructured data. These methods could have applications in other domains where there is an abundance of unstructured data such as for instance government, health and e-commerce.
Sectors Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Healthcare

 
Description The project involved working with a Civil Society Organisation on helping them understand their needs for data infrastructure and management in the era of big data and help them improve the data infrastructure and the quality of the data captured and maintained. The project has had an impact and has helped improve the Organisation's understanding of key issues around the use of technology in relation to their operations and delivery of key strategic objectives as described below: (i) In an era of rapid technological change, the Organisation, like others, is beginning to recognise the fundamental importance of the quality of their data and data infrastructure and that they increasingly rely on these for: - the delivery of their strategic plan, and compliance with legal, and internal and external reporting obligations; - the safe and effective delivery of all their clinical services, as well as legal and training and capacity building services; - fund-raising and communicating effectively with the outside world about what they do; and - research and policy work that has impact and creates change for torture survivors. Based on this they have recognised that the organisation needs to commit ongoing resources to the area of information management, IT and data systems, commensurate with its importance to all of their work and sustainability. (ii) As they routinely collect and use confidential and sensitive information about vulnerable individuals in the course of their work, they have legal and ethical obligations to do this in ways that protect client confidentiality and comply with data protection requirements. Beyond this they have obligations to funders and to their clients to collect and manage their data in the most efficient and effective way possible, so that they can deploy it with confidence in all areas of their work. The project has helped them identify ways in which they can do better in both these areas. The project has demonstrated that issues relating to information management, data and their database are always inter-connected and always connect with wider, underlying organisational issues. These include their strategic priorities, model of service delivery, policies and procedures, workflow in different teams and centres, governance and legal issues, capabilities of staff and their understanding of their role, prioritisation of resources etc. They have therefore learned that they will need to take a whole organisation, co-ordinated approach in order to achieve the step-change set out in their organisational long-term vision and manage the ongoing evolution of their data and information systems, as required for the realisation of this vision. Data and database related issues should not be considered and dealt with in silos within the organisation and decisions about the development of their data systems need to be taken based on an understanding of the available technology, sound evidence and input from all relevant parts of the organisation. Failure to do this risks wastage of resources (especially software developer time and staff time) and unsatisfactory outcomes - a database and other information management systems that do not meet their evolving and diverse needs. (iii) The project has given them a much better understanding of the strengths and shortcomings of their bespoke client database as they continue to develop their data infrastructure. This includes an understanding that they need to ensure that they continue to dedicate adequate resources to database development and that staff are absolutely clear about what is expected of them in relation to information recording, and are sufficiently trained and motivated to carry this out accurately and efficiently. They understand that motivating staff to carry out information recording will be easier the more that they see the benefit and positive use of the data they are creating, so they may need to communicate more effectively with staff about this and create a sense of shared enterprise around the data infrastructure.
First Year Of Impact 2018
Sector Other
 
Title Stories of victims of torture 
Description The dataset contains 100 stories for survivors and victims of human rights abuses. The stories have all the html, css and other tags removed and is text format along with the links from where they have been downloaded from. After relevant pre-processing on the dataset, it has been used to deploy machine learning algorithms to classify the stories in to different kinds of torture types. For example - Sensory deprivation, Stress Techiques, etc. This dataset can be used for any text analysis or mining methodologies. 
Type Of Material Database/Collection of data 
Year Produced 2017 
Provided To Others? Yes  
Impact Collated stories have been used for training and experimenting with machine learning algorithms in avery sensitive domain. 
URL http://blgdataportal.essex.ac.uk/dataset/stories_of_victims_of_torture
 
Description Big Data in Social and Economic Research Workshop organised by the German Data Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Professor Maria Fasli (Lead of the Methodological Research Stream, ESRC BLG DRC), was invited to attend and present at the workshop "Big Data in Social and Economic Research" which was organised by the German Data Forum. The aim of the workshop was to bring together a select group of international experts and research stakeholders to exchange experiences with big data research in the social and economic sciences and to explore and discuss existing and future access to big data sources. Professor Fasli used the workshop to raise awareness of and describe the work on her ESRC-funded projects as well as describe practices and approaches for obtaining, managing and providing access to socio-economic datasets under the ESRC BLG DRC including highly sensitive datasets and research under the project with the charity Freedom from Torture and the Human Rights Big Data and Technology project.
Year(s) Of Engagement Activity 2016