IDEA-FAST: Identifying digital endpoints to assess fatigue, sleep and activities of daily living in neurodegenerative disorders and immune-mediated inflammatory diseases

Fatigue and sleep disturbances are two common and disabling symptoms that affect patients with neurodegenerative disorders (NDD) and immune-mediated inflammatory diseases (IMID). These symptoms are major predictors of poor quality of life and increased healthcare cost. Current questionnaire-based approaches to measure these symptoms have key limitations preventing them from being used as reliable endpoints in clinical trials to evaluate the effect of therapies. IDEA-FAST aims to address these issues by identifying novel digital endpoints for fatigue and sleep disturbances that will provide more objective, sensitive and reliable measures of the severity and impact of these symptoms in ecological settings. Such digital endpoints will not only help to gain insight into the underpinning mechanisms of fatigue and sleep disturbances, but will also vastly improve the efficiency of clinical trials, ultimately reducing the time and cost to bring new therapies to patients. To identify these digital endpoints, we will follow the recommendations of the Clinical Trials Transformation Initiative (CTTI). We will identify the characteristics that fatigue and sleep disturbances will have impact, then select the digital measures (endpoints) to quantify them, followed by choosing the appropriate digital device/technology accordingly. We will then perform a pilot study to prioritise a few of these candidate digital endpoints for validation. We will test the performance of these digital endpoints in two NDD and four IMID in a large longitudinal study during which extensive relevant clinical data will be collected. If these digital endpoints were validated, we will seek support from EMA/FDA for their qualification. Patient users’ perspective, ethical, data privacy, legal and other regulatory issues will be taken into consideration in all aspects of our proposal. The resultant digital biobank from the longitudinal study will become an invaluable resource for future exploitation.

COLOSPEED: Development of a world-leading colorectal cancer research hub in the North East of England

COLO-SPEED will harness the enthusiasm of local endoscopy teams and build a long-term sustainable research infrastructure, using the patient contact point of endoscopy to develop a population-based “experimental platform”. This will recruit patients into a wide range of colorectal cancer (CRC) research studies across the disease continuum, creating a unique, world-leading, resource for CRC screening, prevention and early diagnosis (SPED) research, delivering benefits to patients, the wider population and society of the NE. COLO-SPEED will deliver a genuine 360-degree partnership with patients and public, putting them at the centre of prioritising, advising and informing CRC research and co-producing knowledge.

Design and initial evaluation of an autism-specific health check for use with autistic adults in NHS Primary Care

Autistic people are more likely to experience poor health than people who are not autistic. Some don't seek help when they are unwell and many find going to the doctors difficult. We will work with autistic people to develop and test an autism health check for use in General Practice (by GPs). It could become something that in the future is offered to all autistic people on the NHS.

Engaging the workforce in real time: listening, understanding and responding to what matters most to our staff

Of the 1.4 million people who work in the NHS in England, more than 50% say they are unable to meet all of the conflicting demands on their time at work, and nearly 40% say that they’ve been unwell as a result of stress at work. Staff burnout in the NHS leads to low levels of staff engagement, which affects quality of patient care, patient experience, and staff and patient safety. At Northumbria Healthcare NHS Foundation Trust, there are currently limited way to have a meaningful, ongoing conversation with staff on what can be done to improve the workplace environment, and where improvement efforts should be focused. This project aims to address these gaps. The project aims to integrate real-time understanding of staff experience with Northumbria’s well-established real-time programme for capturing patient experience. The organisation-wide programme will capture everyday experiences of the workforce and introduce new technologies where possible to help capture these experiences in busy working environments. As many staff as possible will be encouraged to respond an annual staff experience survey and to quarterly pulse surveys. Programme infographics and a reporting framework will be deliberately appreciative, celebrating success and learning from what works, as well as where needs improvement. This evidence will inform improvement pilots led by eight teams across the trust, focused on improving staff experience and performance. Team results will be analysed and interpreted independently, and correlated with real-time patient experience measures, sickness and absence levels, team-level patient complaints, and safety data.

Distributed Ledgers and Decentralised Energy in Sub Saharan Africa

The global mobile phone industry has emerged as an important partner in achieving the UN's goals of sustainable energy access for all in Sub Saharan Africa. Support for mobile enhanced energy services in the region driven by the Groupe Spéciale Mobile Association (GSMA), which represents the interests of mobile operators worldwide. The GSMA has identified distributed ledger technologies as a key area of interest with the potential to transform existing business models for decentralised or off grid energy services in sub Saharan Africa and accelerate access to sustainable energy services. To this end GSMA's Mobile for Development Utilities division is currently seeking to better understand and evaluate the potential impact, applications, use cases, benefits and costs of distributed ledgers for energy service companies and customers, with the goal of leveraging its strategic partnership with the Department for International Development to resource future trials and to catalyse private sector investment. Working in partnership with the GSMA's Mobile for Development Utilities programme and ElectriCChain, developers of the SolarCoin Blockchain, this 24 month research project brings together a team of electrical and electronic engineers, human-computer interaction specialists, and social anthropologists to explore the potential for distributed ledger technologies to accelerate access to off grid solar energy in Sub-Saharan Africa by delinking current business models from existing mobile money payment infrastructures and third parties, creating new models for incentivising and rewarding the installation of off grid solar, and developing new peer-to-peer business models.

Enabling Ongoingness

The 'oldest old' are the fastest growing age group in the UK and a grand societal challenge we face is that the nature of growing older and end of life is changing. There are distinct challenges that are pushing some existing systems to breaking point (e.g. there is an increasing demand for care, but there are reductions in resources available to support the older old and worryingly a reduction in people using local authority care services which is suggestive of exclusion). We position this research within the fourth age; a period of life clinically characterised by physical and cognitive frailty and decline towards death. People in this period of life are seldom included in research, but have a unique voice around critical societal challenges and could be sensitively and meaningfully included into research in order to give them a voice in the reimagining of digital media to support sense of self for the older old. Further this research will engage with carers and those bereaved to investigate how new media could support people's relationships and sense of self not only at end of life but also in bereavement. We are living in a new digital age, each gathering a digital trail of media and personal data as we live: photographs, videos, blog posts, forum comments, Facebook conversations, tweets, music preferences etc. Whether these are created by us or by others about us there is a vast and rich wealth of digital media that could be leveraged and reappropriated to reflect positive things back to us in new ways - about ourselves and our connectedness with others. The concept of ongoingness is something we see as valuable for the development of new tools and systems for the configuration of metadata in new ways. Ongoingness suggests that all stages of our lives are connected and continuing, which gives us ways to think about what digital media creation and consumption practices could be that draw on the repository of media connected to us in challenging contexts. It also gives us the ability to consider how digital technologies could be developed in acknowledgement that people need to maintain a form of connectedness to a dead loved one in bereavement. Beyond memorialisation people benefit from practices that nurture an ongoing (albeit different) relationship with the deceased after a loved one has died. To date there is a lack of research considering technology for these contexts and what we can't do currently is curate this vast resource of media to specifically support sense of self, help people deal with their own approaching end of life, nor help others deal with bereavement of a loved one through using these digital assets in purposeful ways. Through links via our partners from Alzheimer's Society, Cruse, NCPC, HospiceUK, Dementia Positive, Marie Curie and Dementia Care we will work with older old people, carers and the bereaved using a research through design methodology to gently use acts of making and reflecting through objects to firstly develop new ways of using our metadata, secondly develop and deploy Internet of Things high fidelity prototypes that enable creation and curation of this digital media in new ways and thirdly develop new visions of consumption that foreground ongoingness. To give an example of what this could mean in the context of anticipating death - through their lives Betty and Derrick always used to jokingly argue with each other as to which song was better The Beatles 'Blackbird' or 'Dear Prudence'. Derrick curates their media so that after his death when Betty selects 'Blackbird', the song 'Dear Prudence' will always be played straight afterwards because he knows that it will make Betty smile. The couple loved gardening, now every May Betty unfolds her e-paper and a compilation of podcasts featuring specific flowers from the current year's Chelsea Flower Show are sent to Betty and a matching bouquet is delivered to her with anecdotes from Derrick's blog of how he grew some of these plants.

SILVER: Smart Interventions for Local Vulnerable Families

One of Connected Health Cities’ major areas of interest in the North East and North Cumbria is the high risk user groups and vulnerable families. For example, children subject to a Child Protection Plan, adults and young people out of work/at risk of worklessness or at risk of financial exclusion, and families affected by a range of social and health problems such as anti-social behaviour, domestic violence and substance use. The SILVER programme aims to explore how data linkages can be implemented to benefit these same populations. The SILVER project aims to link data across multiple agencies including health (physical and mental), social care, criminal justice, housing and education in order to develop a more complete Learning Health System.

DERC: Digital Economy Research Centre

The Digital Economy Research Centre (DERC) will theorise, design, develop, and evaluate new digitally mediated models of citizen participation that engage communities, the third sector, local government and (crucially) the commercial digital economy in developing the future of local service provision and local democracy. DERC will deliver a sustained program of multi- and cross- disciplinary research using research methods that are participatory, action-based, and embedded in the real world. The research approach will operate across multiple scales (e.g. individual, family, community, institution) and involve long-term embedded research activity at scale. The overarching challenges are significant: -- the development of new technologies and cloud-based platforms to provide access to open and citizen-generated data, big data analytics and software services at scale to support trusted communication, transactions, and co-production between coalitions of citizens, local government, the third and commercial sectors; -- the development of participatory methods to design digital services to support citizen prosumption at the scales of communities and beyond; -- the development of new cross-disciplinary insights into the role of digital technologies to support these service delivery contexts as well as understandings of the interdependency between contexts and their corresponding services. The backbone of this research agenda is a commitment to social inclusion and the utilisation of participatory processes for user engagement, consultation and representation in the design and adoption of new forms of digital services. The main research themes of DERC address the development of models of digitally enabled citizen participation in local democracy (planning), public health, social care and education, and the nature of new civic media to support these. The Centre's research will be conducted in the context of local government service provision in the Northeast of England, in close partnership with Newcastle City Council, Gateshead Council and Northumberland, and supported by a consortium of key commercial, third sector and professional body partners. DERC's extensive program of research, knowledge exchange and public engagement activities will involve over 20 postdoctoral researchers and 25 investigators from Computer Science (HCI, Social Computing, Cloud Computing, Security), Business & Economics, Behavioural Science, Planning, Education, Statistics, Social Gerontology, Public Health and Health Services Research.

Identifying Health Promoting Elements in Care Homes

A 12 month research challenge, whereby we aim to assemble a community of stakeholders around the topic of enabling and health promoting environments including academics, social and health practitioners, built environment professionals and policy makers. Within this challenge we will carry-out user studies within care homes and organise workshops and training events to disseminate the findings.

Postdoctoral and Early Career Researcher Exchanges

Two month long research exchanges with University of Lisbon and Rochester Institute of Technology (RIT) to extend ongoing research collaborations with the Large-Scale Informatics Systems Laboratory is a research unit at the Department of Informatics (LaSIGE), Faculty of Sciences; and Golisano College of Computing and Information Sciences. This time was spend developing new research activities around non-visual interactions with mobile technologies. Resulting in the formation of the Braille21 initiative, to develop digital technologies to promote and leverage braille literacy. These exchanges lead to six collaborative publications on novel non-visual interaction for mobile and large touch surfaces.