Summary

In this talk we will present research we are conducting within an NIHR funded research programme. The programme is focused on evaluation of integration of symptom tracking for rheumatoid arthritis into clinical care using a mobile phone app (known as REMORA2). As part of the programme, we are conducting research aiming to investigate barriers to engagement and inclusion for this programme, as well as developing and refining interventions to address these barriers. We will report on interviews conducted within South Asian communities who speak Urdu, as well as interviews with people who decline or do not start symptom tracking after joining the study. We will also report on workshops conducted within marginalised and underserved communities and talk about design of support for digital inclusion based on this work. 

Speaker Bio

Prof Caroline Sanders (UoM)

Caroline is Professor of Medical Sociology with expertise in qualitative methods, patient experience, inequalities in health and care services, digital health and patient safety. She leads the ‘Developing safer health and care systems’ research theme within the Greater Manchester Patient Safety Research Collaboration, and co-leads the ‘Person-centred care and complex health needs’ research theme within the Centre for Primary Care and Health Services Research. She is lead for Public and Community Involvement and Engagement (PCIE) for Manchester Academic Health Science Centre, and for the NIHR Applied Research Collaboration in Greater Manchester. 

Summary

Digital technologies can improve health and care services for staff and patients, but there is no guarantee that everyone will be able to take advantage of these improvements. This presentation will give a summary of the findings from The Kings Fund report on digital exclusion including the experience and expectations of the public alongside the work being undertaken in the NHS.

You can find the report here: https://www.kingsfund.org.uk/publications/exclusion-inclusion-digital-health-care

Speaker Bio

Pritesh Mistry, King’s Fund

Pritesh works in the policy team where he focuses on how digital tools and technologies can improve health and care. He is particularly passionate about using evidence-based digital technology as an enabler to improve quality of care and outcomes while critically assessing buzzwords and technology as a silver bullet. Pritesh combines his understanding of technology with the broader picture of the essential ingredients needed for digital change to have an impact. This encompasses culture, unmet need, infrastructure, change management and knowledge all to improve quality, inequalities and outcomes.

Before joining the Fund, Pritesh led the innovation activity at the Royal College of General Practitioners encompassing system change, entrepreneurship, grassroots innovation and horizon-scanning. Before this he worked at Guy’s and St Thomas’ NHS Trust helping to bring together clinicians and patients with research and technology to improve the care and outcomes of people with life-debilitating conditions such as heart failure.

Speakers : Dawn Edge & Pauline Whelan, University of Manchester

Summary

This talk presents the development and initial use of a Minimum Digital Living Standard (MDLS) for Households with Children, drawing on a project based on significant prior work on digital inclusion and Minimum Income Standards (MIS).  The MDLS adapted the consensus-based methodology used to develop the MIS. Over three iterative rounds, groups consisting of purposively sampled participants who are demographically similar but socio-economically different developed a consensus MDLS definition through:

1. consideration of what it means to be digitally included, and construction of case studies

2. identification of the digital goods, skills and services needed in case study households

Further groups were undertaken to assess specificities around age (young people 16-18) and region (Wales). A UK-wide survey operationalised the MDLS to assess links with social, economic, cultural, and digital factors. This was an in-person quota sample of 1500 households, selected to represent the UK population of families with children.

The talk reports on the development of the MDLS and the initial results from the survey.  Overall, the project seeks to understand variation in needs, the specific challenges in families meeting, and the consequences of not meeting, the MDLS. As a future step the survey data, along with other relevant secondary data, will be integrated into a geodemographic. Qualitative work is ongoing with representatives of families who are below the MDLS to explore issues arising from falling below the standard.  The work has been funded by the Nuffield Foundation, Welsh Government, and Nominet.

Speaker Bio

Simeon Yates, University of Liverpool

Simeon Yates is the Professor of Digital Culture in the Department of Communications and Media at the University of Liverpool and Joint Director of the Digital Media and Society Research Institute. Simeon has undertaken research on the social, political, and cultural impacts of digital media for over three decades.  For the last two decades he has had a focus on projects that address issues of digital inclusion and exclusion. In this work Simeon engages with both academic, charity, and government colleagues to develop policy and interventions to support digital inclusion. This includes working with the UK’s Department of Digital, Culture, Media and Sport (DCMS), the UK’s media regulator Ofcom, and the Welsh Government as well as charity organisations such as the Good Things Foundation, Cwmpas in Wales and SCVO in Scotland. In 2017 he was seconded to DCMS to act as research lead for the Digital Culture team – helping to develop the first UK “Digital Culture” policy. Simeon is a Member Greater Manchester City Region Mayoral Digital Inclusion Action Network, and he is an appointed expert advisor to DCMS and Ofcom.  Simeon recently completed a project exploring citizens’ data literacy and is leading the project to explore a “Minimum Digital Living Standard” for UK households – both funded by the Nuffield Foundation. He is also deputy director of the DSTL Defence Data Research Centre and one of the leads for the ESRC Digital Footprints Programme Strategic Advisory Team.

Speaker: Emma Stanmore, University of Manchester

Summary

Digital health interventions are increasingly used and widely touted as “game-changing” in improving healthcare delivery and access, but is this the case? Ethnic minorities, long recognised to have worse health outcomes in long-term conditions such as cardiovascular disease and diabetes, may benefit from such interventions. In the NIHR-funded DISC (Digital Inequalities in South Asians with Cardiometabolic disease) Study, Amitava Banerjee and his team have been investigating how people of South Asian backgrounds use digital health interventions before and during the pandemic. In this talk, Professor Banerjee will explore implications for research, practice and policy in digital health in ethnic minority populations beyond the pandemic.

Speaker Bio

Speaker: Prof Ami Banerjee (UCL)

Amitava Banerjee is Professor in Clinical Data Science at the University College London, and Honorary Consultant Cardiologist at the University College London Hospitals and Barts Health NHS Trusts. Also, he is Vice-President (Digital, Communications and Marketing) of the British Cardiovascular Society and Senior Advisor to the World Heart Federation Emerging Leaders Programme. His interests span data science, cardiovascular disease, global health, training and evidence-based healthcare.

Watch the recording here.

Summary

In Canada, the urgency of responding to the COVID-19 pandemic led to a patchwork of funding for virtual care, resulted in the rapid implementation of virtual services, and left organizations with little opportunity to establish strong foundations for equitable virtual care. We will present the findings of a scoping review of reviews led by Budhwani et al. (2022) that synthesized review-level evidence regarding the most salient challenges for structurally marginalized communities to access virtual care and identified strategies to improve access to, uptake of, and engagement with virtual care for these communities. We will then present our findings from two collections of case studies conducted with a subset of health care organizations across Canada to describe how health equity was neglected or considered in the implementation and delivery of virtual care. We will conclude the presentation with some key insights and recommendations on how to support an equitable and sustainable approach to virtual care delivery.

Speaker Bio

Speaker: Dr Jay Shaw & Simone Shahid (University of Toronto)

Jay Shaw is the Tier 2 Canada Research Chair in Responsible Health Innovation and an Assistant Professor in the Department of Physical Therapy at the University of Toronto. Jay has a cross-appointment to the Institute of Health Policy, Management and Evaluation where he supervises research-focused graduate students. He serves as Research Director of Artificial Intelligence (AI), Ethics & Health at the University of Toronto Joint Centre for Bioethics, and is adjunct Scientist at the Women’s College Hospital Institute for Health System Solutions and Virtual Care.

Simone Shahid is a Research Coordinator at the Women’s College Hospital Institute for Health System Solutions and Virtual Care. In her current role, she focuses on innovative models of community-based care, inequities in digital health care, and their implications on policy and the health care system.

Watch the recording here.

Summary

As data and digital technology are now being used in all aspects of research, innovation and healthcare, Maxine will discuss the intersection of data science, health and equity, illustrated by the inequities rife in genomics. Studies of human genetics have largely focused on populations from WEIRD (Western, Educated, Industrialized, Rich, Democratic) countries which has resulted genomic insights that are not generalizable to all populations. Most studies, trials and papers conclude with a call to action to recruit and use more diverse genomes, and yet the proportion of non-European ancestries in genomic studies is diminishing. To address this gap, we must work across the whole pipeline of genomic research and health care delivery, from the populations we work with and the data we collect, to the analyses we carry out and the availability of genetic testing. This talk will cover the complex challenges taking an end-to-end approach to diversifying health and genomic data involves, and what we might do to reduce bias in our data-driven systems in precision medicine.

Speaker Bio

Dr Maxine Mackintosh (Genomics England)

Maxine is the Programme Lead for Diverse Data at Genomics England, an initiative which aims to improve the representativeness of genetic datasets and fairness of genomic insights. She is also the Co-Founder of two communities: (a) One HealthTech – a global distributed community supporting diversity in health innovation; (b) Data Science for Health Equity.

Watch the recording here.

Summary

In this talk, Mustafa will describe how inequalities in pain prevalence, treatment, and outcomes may be addressed by developing equitable and cross-culturally acceptable digital pain self-reporting tools. He will use his work on the Manchester Digital Pain Manikin as an example.

Speaker Bio

Syed Mustafa Ali (UoM)

Mustafa is a research associate in health informatics at the Centres for Epidemiology Versus Arthritis and Health Informatics in the University of Manchester. Before joining the University, he designed, monitored and evaluated public health interventions in Pakistan for more than 10 years. In his current role, he focuses on digital collection of patient-generated health data. As a continuation of his past work on reducing health inequalities, he aims to harness digital patient-generated data to improve the health outcomes of culturally diverse populations.

Watch the recording here.

Summary

In this talk, Johan and Brian will talk about the idea of digital global public good and will articulate their understanding of it. They will share their experience of examining the development of DHIS2, a global health platform inspired by public goods, and will discuss paradoxes that would arise in the scaling process. They found that the scaling dynamics played out differently at the macro and micro levels, giving rise to the following paradoxes: 

(a)    Addition of new functionalities to cater to the universe of users across the world (macro level) works counter to the needs of users in particular locations (micro level); 

(b)    Responsiveness to the requests of the donors with a global view (macro level) distorts the production process, as the voices of users, situated in remote locations in developing countries, are not adequately heard; 

(c)     The system needs to be simultaneously relevant across the global (macro level) and the local (micro level), when the former calls for decontextualization and the later (re)contextualization. 

•         You can read more about it in their recent publication: https://doi.org/10.1080/01972243.2022.2105999

Speaker Bio

Prof Brian Nicholson and Dr Johan Ivar Sæbø

Dr. Johan Ivar Sæbø, is an Associate Professor at the University of Oslo, Norway. He has for long worked with health information systems strengthening, in particular, related to the Health Information Systems Project (HISP) in the Global South. His interests concern how to improve decentralized information use in the health sector, and how this can be supported with appropriate technology.

Dr. Brian Nicholson is Professor of Information Systems at Alliance Manchester Business School, University of Manchester and since 2018 adjunct professor in the Health Information System Project group at the University of Oslo. Since 1995, he has been involved in teaching, research and consultancy projects in the broad area of ICT for development including global outsourcing of software and other business processes. Recent work has focussed on digital platforms and the Oslo HISP project conceptualising the health surveillance platform DHIS2 as a global public good.  

Watch the recording here.

Summary

In this talk, Lara will talk about the algorithmic impact assessments (AIAs), which are an emerging mechanism for assessing possible societal impacts of a technology before it’s put into use. Their proponents see them as a promising tool for making developers of data-driven technologies – including artificial intelligence – accountable by those affected by them. As use of AI becomes more ubiquitous in health and care service delivery, there is also a pressing need for robust oversight of these technologies to ensure they are safe, ethical and do not exacerbate existing health inequalities.

In partnership with the NHS AI Lab, the Ada Lovelace Institute explored whether an algorithmic impact assessment could be used in a healthcare data access context, and whether they could support the NHS goal of maximising the benefits and minimising the risks of AI in healthcare. In this talk, Lara will present our seven-step process, and consider how an algorithmic impact assessment might help translate AI ethics principles into practice and mitigate against digital health inequalities.

Speaker Bio

Lara Groves (Ada Lovelace Institute)

Lara is a Researcher at the Ada Lovelace Institute, the London and Brussels-based research institute with a mission to make data and AI work for people and society. Her research interests fall at the intersection of tech ethics, policy and society, with a sustained focus on methods and tools for translating ethical AI principles into on-the-ground practice.

Watch the recording here.

Summary

The rise of digital health has created exciting opportunities to increase access to health interventions and care; however, it has also revealed the persistence of inequities in access to healthcare, and has even created new barriers. Attention to digital health equity is necessary to ensure that all citizens are advantaged by developments in health technology.  In this talk, Allison will speak about: (1) Continuum of social determinants of health and digital determinants of health; (2) Digital health equity barriers and facilitators across different populations, including intersectionality, and (3) A new and practical tool to appraise and improve digital health equity, the Health Equity Impact Assessment, Digital Health Supplement

Speaker Bio

Allison Crawford (UoToronto)

Allison Crawford, MD, PhD is the Director of Virtual Care at the Centre for Addiction and Mental Health, and the Chief Medical Officer of the Canada Suicide Prevention Service. She is an Associate Professor in the Department of Psychiatry and Dalla Lana School of Public Health, University of Toronto. HeART Lab is the home for her community-based, arts-engaged research (www.HealthEquityART.com).

Watch the recording here.

Summary

This talk will provide an overview of both phases of the research project; firstly, the rapid review which investigates the key issues related to access to digital technologies for older adults identified in published and grey literature; secondly, emerging themes from the interviews conducted with older adults in Greater Manchester exploring their access to and experiences of digital public services during the pandemic.

Speaker Bio

Dr Annemarie Money & Dr Alex Hall (UoM)

Dr Annemarie Money is a Research Fellow in the Applied Research Collaboration – Greater Manchester (ARC-GM), working on the Healthy Ageing theme.  She has been working at the University since 2007 and is a mixed methods researcher with a background in the social and health sciences.  Her work covers many disciplines such as sociology, gerontology, epidemiology, ageing and work, and public health. Her current research interests include healthy ageing and physical activity, menopause and physical activity, digital participation, and ageing workers. 

Dr Alex Hall is a Research Fellow based in the Healthy Ageing Research Group (HARG) and the NIHR Policy Research Unit in Older People & Frailty.  His research interests relate to gerontology, dementia and palliative care, in particular, he is interested in the organisation and delivery of older adults’ health and social care, development and implementation of health technologies, and later life finances.

Watch the recording here.

Summary

In this talk, Gindo will talk about his ongoing research on deploying a multifaceted intervention with a digital heart (SMARThealth) that has been bearing fruits in personal survival, novel community engagement and improved public health policy. He describes the initial pragmatic trial results, its research extension and scaling up in rural Indonesia today.

Speaker Bio

Dr Gindo Tampubolon (UoM)

Gindo is lecturer in global health in the Global Development Institute, University of Manchester. He is also the deputy director of Rory and Elizabeth Brooks Doctoral college. Gindo’s work focuses on how different digital technologies deliver varying benefits to different groups in society and through what mechanisms. He has been part of several longitudinal ageing studies around the world including the English Longitudinal Study of Ageing, the US Health and Retirement Study, the Survey of Health, Ageing and Retirement in Europe, the China Health and Retirement Longitudinal Study and the Chinese Longitudinal Healthy Longevity Survey.

Watch the recording here.

Summary

Entrenched inequalities have major impacts on health outcomes, both within and across societies. While the digital era has potential to improve this situation it may also worsen it.

In her talk, she will describe a few of the obvious and not so obvious pathways through which this happens, discuss some of the blind spots hindering governmental and clinical efforts to mitigate these effects, and examine influences in the wider digital and analogue economies that complicate the challenge. Finally, she will consider various approaches that may help to improve the fairness and benefits of digital health, and emphasise the need for whole systems thinking.

Speaker Bio

Dr Claudia Pagliari (University of Edinburgh)

Claudia is senior lecturer in primary care and informactics in the University of Edinburgh. She is active across the Centre for Population Health Sciences, the Centre for Medical Informatics, the Edinburgh Global Health Academy and the Institute for Science, Technology and Innovation. She also has several expert advisory roles, including Expert and Technical Advisor in Digital Health for the World Health Organisation, Advisor and Chair of the National Expert Group in Digital Ethics for the Scottish Government, and member of national scientific review boards for Norway, Belgium and Switzerland.

Watch the recording here.

Speaker Bio

Prof Arpana Verma (University of Manchester)

Arpana is Clinical Professor of Public Health and Epidemiology and she is Head of the Division of Population Health, Health Services Research and Primary Care. She is Director of Manchester Urban Collaboration on Health (MUCH), a WHO Collaborating Centre and honorary Consultant in Public Health at Public Health England. 

Watch the recording here.