Digital health inequities seminars

Summary

This seminar will share insights from the digital inclusion workstream of the REMORA2 trial – a stepped-wedge cluster randomised trial testing the effectiveness of REMORA, a co-designed smartphone app that enables regular symptom tracking integrated into the electronic health record for people living with rheumatoid arthritis (RA). View the trial protocol.

The digital inclusion workstream aims to identify barriers to digital inclusion for individuals eligible to take part in REMORA2, through interviews with patients who could not, or chose not to, use the app. These interviews provided insight into how social determinants of digital health inequities are reflected in the experiences of people living with RA. Speakers will discuss key learnings from these interviews and how these insights might inform the development of similar digital health interventions.

For more information on the programme, please visit the REMORA website. 

Speakers’ bios

Caroline Sanders is Professor of Medical Sociology at the University of Manchester. She has expertise in qualitative methods and research focusing on health and care experiences, particularly among marginalised and underserved communities.

Josh Behan-Devlin is a Research Associate at the University of Manchester on the REMORA2 trial. He is a qualitative researcher with a particular interest in how technologies are used in context.

Karen Staniland is a patient living with rheumatoid arthritis and a patient partner in the PPIE group for the REMORA study, where she co-chairs the group.

Speakers

Anita Banerji, Ella Kaye, and Pauline Karega

Summary

Digital research professionals are professionals working in research who write software for research purposes, whether that is smaller scripts, larger applications, or public/patient facing systems. It also includes those who manage research data and the digital infrastructure required.

Data shows that the majority of digital research professionals are white male which, in itself, suggests an inclusivity issue that needs addressing. However, it also results in research groups not gaining the benefits of diverse teams seen in commercial software engineering settings, such as creativity, productivity and inclusive solutions.

To improve the inclusivity of digital teams and careers, we first need to understand the experiences of underrepresented groups in these professions. We have, therefore, turned co-production methods back towards research culture, working with digital research professionals from underrepresented groups to develop our research aims, methods, and findings.

 In this presentation, the speakers will share their experiences of co-production with digital research professionals: the barriers, benefits, and early findings.

Speakers’ bios

Anita Banerji has a PhD in Medical Image Analysis and has also worked as a post doc and research software engineer in this area. She is now interested in cross-disciplinary approaches, bringing in social science methods to improve research culture and opportunities for underrepresented groups in digital research professions. She is currently a research associate based at the University of Manchester and working for the Software Sustainability Institute.

Ella Kaye is a Research Software Engineer in the Department of Statistics at the University of Warwick. She works to increase sustainability and EDI Equality Diversity and Inclusion in the R Project. She also runs rainbowR a community that supports promotes and connects LGBTQ people who code in the R language.

Pauline Karega is a PhD student in Earth and Environment Sciences and Computer Science at the University of Manchester. She co-leads an initiative to increase awareness of Bioinformatics and Open Science in Kenya.

Speaker: Jennie Popay

Summary

FOR EQUITY is an open access web-based resource that aims to support people involved in research to make the evidence they produce more relevant to action to reduce social and health inequalities.

This presentation introduces the content of the resource, describe the collaborative process involved in its development, reflect on how it is being used and how it’s impact could be increased in the future

Speaker’s bios

Jennie Popay is Distinguished Professor of Sociology and Public Health at Lancaster University in the UK. She is a Fellow of the Academy of Social Sciences UK, a Fellow through distinction pf the UK Faculty of Public Health and received the British Sociology Association distinguished service medal in 2022.

She is co-lead for a major programme of research on health inequalities within the English School for Public Health Research. Her research focuses on social determinants of health equity, lay knowledge, and the evaluation of community/place-based interventions/policies. She recently completed a longitudinal evaluation of the largest community empowerment programme ever implemented in England – the Big Local.

She established The Other Front Line Global Alliance collecting stories from groups bearing the brunt of social injustice. She has also produced several online resource to support researchers to strengthen the equity focus of their work including Neighbourhood Resilience.

She worked with the WHO Commission on the Social Determinants of Health (the Marmot Commission) and is a Member of the Scientific Advisory Expert Group for WHO EURO’s Health Equity Status Report.

Slides of the presentation can be found here: Focus on research and equity (PDF).

Responses to questions can be found here: Speakers response to questions in the chat (PDF).

Watch the recording on YouTube: Doing eHealth right: How can we ensure that healthcare remains accessible and works for everyone?

Speakers: Nicole Goedhart and Ibukun Abejirinde 

Summary

The seminar starts with a conversation between Ibukun and Nicole on their research programmes and collaborative projects in digital health equity, followed by a 20-minute presentation delivered by Nicole on her project “Doing eHealth Right”.

In this presentation, she shares initial findings from the project, which combines participatory action research and systems learning to better understand challenges and create new opportunities to make eHealth more inclusive for people living in more vulnerable circumstances in the Netherlands. 

This is followed by an open discussion including attendees around bridging the digital divide in healthcare and how strong collaborative networks can chart a way forward.

Speakers’ bios

Nicole Goedhart is an assistant professor in the Department of Ethics, Law, and Medical Humanities at Amsterdam University Medical Center. Her expertise lies in the fields of digital inequalities, action research, and the engagement of citizens living in vulnerable circumstances. Currently, she is the project leader of ‘Doing eHealth Right,’ a four-year project aimed at contributing to the reduction of digital (health) inequalities.

Ibukun Abejirinde is an Assistant Professor at the Dalla Lana School of Public Health, University of Toronto and a Scientist at the Institute for Better Health, Trillium Health Partners. Her research considers the intersections of technology and health inequities and what it means for how marginalized populations experience and access quality care.

Through the Canadian Network for Digital Health Evaluation, she led the development of the first pan-Canadian digital health evaluation framework to inform a common reference for shared learnings on digital health across Canada. She is University of Toronto’s co-lead for the digital health equity hub within the trilateral International Collaborative for Translational Digital Health. 

Watch the recording on YouTube: Working in partnership with underserved communities to understand and address digital health inequities.

Speakers: Caroline Sanders, Kelly Howels, Mat Amp, Stephanie Gillibrand, and Dan Bleksley

Summary

In this seminar, Caroline and colleagues talk about experiences of undertaking research in partnership with underserved communities to explore different aspects of digital health inequities. They discuss the role of participatory approaches to doing such research and key considerations for successful partnership working between university researchers and community-based researchers within voluntary sector.

They present examples from two studies focused on experiences of marginalised and underserved communities. One study was conducted during the Covid-19 pandemic to explore the impact of organisational and technology changes on access to healthcare for people experiencing homelessness. A second study explored perspectives on health data sharing for multiple purposes (including research and direct care) amongst marginalised communities.

They also talk about initiatives in Greater Manchester to support greater partnership working between Voluntary Community Faith and Social Enterprise (VCFSE) sector, research organisations and healthcare providers.

Speakers’ bios

Caroline Sanders is Professor of Medical Sociology at the University of Manchester. She has expertise in qualitative methods and research focusing on health and care experiences, especially for marginalised and underserved communities.

Kelly Howells is Research Fellow within the NIHR Greater Manchester Patient Safety Research Collaboration and the NIHR School for Primary Care Research at the University of Manchester. She is a sociologist with expertise in qualitative research methods and has a focus on patient safety, health inequalities and experiences of marginalised and underserved communities.

Mat Amp is a Project Officer at homelessness charity Groundswell where he has led and worked on multiple projects including a number focused on the impact of COVID-19 on people experiencing homelessness. He has expertise in community reporting and supporting volunteers to share their experiences in order to influence decision-makers. He is also deputy editor for the Pavement magazine.

Stephanie Gillibrand is Research Fellow within the Centre for Primary Care and Health Services Research at the University of Manchester, where she undertakes qualitative and mixed-methods research with a focus on health inequalities, access to and experiences of healthcare services for marginalised and under-served groups; experiences of marginalisation and social inequalities. She is part of the NIHR funded REVAL rapid service evaluation team where she undertakes evaluation of health policy, pilot programmes and interventions.

Dan Bleksley is Research Manager at homelessness charity Groundswell and has a background in homelessness outreach and support work. He works across many projects and partnerships and is passionate about involving people with lived experience in every stage of research. Dan is particularly interested in understanding and tackling the stigma around mental health and drug dependency that affects people experiencing homelessness, a subject he explored in his master’s degree research.

Watch the recording on YouTube: Demystifying user-centred design in healthcare.

Speaker: Tim Brazier

Summary

In this seminar, Tim shares lessons and insights from the design-thinking approach they use at Thrive by Design. He breaks down the different stages of user-centred design, explain how to apply different techniques, and how to adapt them to various contexts.

By doing this, Tim hopes to demystify user-centred, inclusive co-design and make it something that more researchers and others working in healthcare will consider incorporating in their practice.

Speaker bio

Tim is Managing Director of Thrive by Design, an in-house NHS design team focussed on improving people’s access and experience of digitally enabled healthcare. He has 10 years’ experience in co-designing digital systems, platforms and people pathways across health and community sectors.

Tim’s work on re-designing community spaces through the NHS Widening Digital Participation programme saw Nailsea Town Council transform their services and be runner up in the ‘Digital Council of the Year Digi 100 Awards’. His previous roles include being Head of Service Design at social change charity Good Things Foundation.

Watch the recording on YouTube: Approaches to build trust in health research among Muslims.

Speakers: Imam Mohammed Mahin Saiyed and Mustafa Ali

Summary 

In this talk, Mahin and Mustafa talked about their work with Imams and Muslim community members to understand the determinants of community’s trust in health research and technologies. They also talked about potential approaches through which community’s trust in health research can be built, which may translate into widening participation from these communities.

Speaker’s bio

Saiyed Mohammed Mahin is an Imam serving in one of the biggest mosques in London. He received his early Islamic education from Jamia Al Karam and went to the distinguished Al Azhar university in Egypt to complete his studies.

Mustafa Ali is a research associate based at the Centre for Health Informatics. His work focuses on understanding and addressing digital health inequities faced by individuals and groups living in the UK, particularly South Asians. As part of this work, he also works with local community leaders to develop approaches to engage with communities in a more equitable manner to promote participation from these communities in health research.

Watch the recording on YouTube: Towards a decolonial agenda for digital health in Sub-Saharan Africa.

Speaker: Professor Sharifah Sekalala 

Summary

The talk focuses on the idea that the unbridled enthusiasm for digital health and AI in Sub Saharan Africa is disguising new forms of coloniality. In order to ensure that low and middle income countries get the deepest benefits from digital health, they will need a decolonial agenda that centres the needs and interests of people from the global south.

Speaker bio

Professor Sharifah Sekalala was conferred to the Fellowship of the Academy in spring 2024. She is Professor of Global Health Law at the University of Warwick and her deeply interdisciplinary work sits at the intersection of international law, public policy and global health.

Sharifah’s research addresses complex and pressing issues around health crises in Sub-Saharan Africa, international financing institutions and the socio-legal impact of new innovations in health, such as digital health. Sharifah is currently the Principal Investigator on a 1.4 million Euro Wellcome-Trust-funded project on digital health apps in Sub-Saharan Africa.

Watch the recording on YouTube: Desperately seeking intersectionality in digital health disparities research.

Speaker: Laiba Husain

Summary

In her presentation, Laiba talks about how digital health solutions often fail to acknowledge how digital health disparities emerge and play out both within and across categories of disadvantages; how theories of multiple disadvantage in digital health research and innovation provide a helpful lens to think about this; and how developing personas to reflect the lived experiences and challenges disadvantaged groups face when navigating digital healthcare services may help capture intersecting dimensions of disadvantage and address digital disparities in these groups.

Speaker bio

Laiba Husain is a third-year DPhil student at the Nuffield Department of Primary Care Health Sciences whose work focuses on the shift to video consultations and its implications on digital health disparities. Her study is funded by THIS Institute and investigates how video consultations shape the experience of digital healthcare for disadvantaged patients in the UK.

After graduating with a Bachelors in Biopsychology, Cognition and Neuroscience from the University of Michigan (USA), Laiba came to the UK as a Fulbright Scholar where she completed a Master’s in Public Health at the University of Birmingham. Her wider interests include interdisciplinary and participatory approaches to research, social & health inequalities and empowerment of marginalised communities.

Watch the recording on YouTube: Drawing from sociological and other disciplinary literature for digital health equity translational pedagogy.

Speaker: Dr Mahima Kalla

Summary

This seminar was hosted In collaboration with the International Centre for Translational Digital Health, featuring Dr Mahima Kalla from the University of Melbourne, Australia. Mahima delivered a talk on “Drawing from sociological and other disciplinary literature for digital health equity translational pedagogy”.  

She shared how CDTH incorporates multi-disciplinary knowledge to deliver translational pedagogy for digital health equity to professionals across Australia, and now internationally.

Speaker bio

Dr Mahima Kalla is a Research Fellow within the University of Melbourne’s Digital Health Validitron. She is an inter-disciplinary professional with a background in engineering and management consulting.

As a digital health researcher, she focuses on the translation of patients’, carers’ and professionals’ lived experience and tacit knowledge into the co-design, development, and implementation of digital health solutions.

She has a particular interest in digital health equity, and social / digital determinants of health. Dr Kalla is an emerging national expert in qualitative research methodologies, including both traditional and non-traditional paradigms.

While digital health technologies show promise for improving the quality and safety of patient care and health outcomes, inadequate consideration of equity and accessibility issues have the potential to exacerbate extant health disparities. Poorly designed and/or implemented digital health technologies can worsen health outcomes of socially marginalised populations.

The Centre for Digital Transformation of Health (CDTH, University of Melbourne) has created a digital health equity workshop series to enable multi-disciplinary professionals (e.g. clinicians, researchers, technology developers, students etc.) develop more equitable digital health solutions.

This workshop comprises a series of curated activities which draw inter-disciplinary theory-driven and applied knowledge from domains such as health sociology and design among others.

Watch the recording on YouTube: Developing a minimum digital living standard for households with children.

Speaker: Simeon Yates, University of Liverpool

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 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.

Watch the recording on YouTube: CaFI Digital: developing digital tools to support a culturally adapted family intervention with African and Caribbean people diagnosed with psychosis, and their families.

Speakers: Dawn Edge & Pauline Whelan, University of Manchester

Summary:

People from African and Caribbean backgrounds in the UK, including those of Mixed heritage, are much more likely to be diagnosed with psychosis than White British people. They are more likely to be ‘sectioned’ under the Mental Health Act, experience poorer care from mental health services and rarely offered psychological therapies. When these ‘talking treatments’ are offered, they rarely address people’s culture and lived experiences. In this talk, Dawn and Pauline will discuss the co-design and development of “CaFI Digital” a digital tool to support a Culturally-adapted Family Intervention (CaFI) with African and Caribbean people diagnosed with psychosis, and their families. Further details about CaFI are found here.

Speaker Bio:

Dawn Edge is a Professor of Mental Health & Inclusivity at the Division of Psychology & Mental Health and the University’s Academic Lead for Equality, ‘Race’, Religion & Belief. Dr Pauline Whelan is a Senior Research Fellow at the Division of Informatics, Imaging and Data Sciences at the University and a Co-Director of the GM Digital Research Unit at Greater Manchester Mental Health NHS Foundation Trust. She works across digital health projects with a particular focus on digital mental health.

Watch the recording on YouTube: Supporting digital inclusion in healthcare.

Speaker: Pritesh Mistry, King’s Fund

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: Moving from exclusion to inclusion in digital health and care.

Speaker Bio:

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.

Watch the recording on YouTube: Are clinicians the forgotten people of digital health inequities?

Speaker: Dr Junaid Hussain, Man Confidence

Summary:

We all know of inequities in healthcare and in digital health and digital health therapeutics. These are usually looked at from the angle of the patient (race, gender, age, wealth etc.). Companies that create digital health products tend to retrospectively work on resolving these inequities, often due to protest from patients or their advocates. Dr Hussain argues clinicians who are using these interventions with their patients, are often an even later after-thought in their design and implementation. Dr Hussain discusses the importance of inclusivity of clinicians in digital health product design and implementation, to both avoid further inequity, but also to enhance effectiveness of interventions in the first place.

Speaker Bio:

Dr Junaid Hussain is a practicing primary care clinician based in Birmingham in the UK, having completed his GP training in Manchester. He is a digital health advisor to companies around the world and best known for moaning on LinkedIn about issues he sees in digital health products and their effectiveness. He has worked as a clinician around the UK and in Saudi Arabia, including setting up from scratch a primary care training programme in a desert city. He has a strong interest in making digital health interventions more effective. He also has his own start-up Man Confidence  – focussing on Men’s Mental Health which is currently receiving support through The Hill Pre-Seed Programme (Oxford University Hospitals).

Watch the recording on YouTube: Ethics of robotics and AI: responsible research and innovation within applied healthcare technologies and beyond.

Speaker: Dr Emily Collins (Northeastern University)

Summary

Robotic technologies for rehabilitating motor impairments have been the focus of intensive research and capital investment for more than 30 years. However, these devices have failed to convincingly demonstrate greater restorative function compared to conventional therapy. In this talk, Emily will discuss issues that arise between technologies such as this, but also across multiple domains, wherein we see similar patterns of disconnect between the design and development of technology and its subsequent deployment in the real-world. What factors change between these two contexts that can lead to poor uptake of robotics upon deployment? How can we mitigate this? And why are the answers to these questions so important for sustainable practice, and responsible resource management?

Speaker Bio:

Emily is an interdisciplinary robotics researcher. She is an Associate Research Scientist at the Institute for Experiential Robotics at Northeastern University, a British Psychological Society Chartered Psychologist, and an Honorary Senior Research Fellow at the University of Manchester in the Department of Computer Science. Her key research themes include trustworthiness and verification; responsibility and accountability; and the centrality of human psychology and socio-political factors to effective RAI deployment in the real world. 

Watch the recording on YouTube: Digital health interventions in ethnic minority populations before and after the pandemic.

Speaker: Professor Ami Banerjee (UCL)

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:

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 on YouTube: Equity-focused implementation of virtual primary health care: key insights and future directions from Canada.

Speakers: Dr Jay Shaw and Simone Shahid (University of Toronto)

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:

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 on YouTube: Tackling bias and inequities in health and genomic data.

Speaker: Dr Maxine Mackintosh (Genomics England)

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:

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 on YouTube: Assessing and addressing the impact of pain self-reporting on health equity.

Speaker: Syed Mustafa Ali, The University of Manchester

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:

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 on YouTube: Digital public goods platforms for development: the challenge of scaling.

Speakers: Professor Brian Nicholson and Dr Johan Ivar Sæbø

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.

Speaker Bio

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 on YouTube: What role can algorithmic impact assessments play in mitigating digital healthcare inequalities?

Speaker: Lara Groves (Ada Lovelace Institute)

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 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 on YouTube: Collaborating to ensure digital health equity – the Health Equity Impact Assessment Tool.

Speaker: Allison Crawford (UoToronto)

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, 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.

Watch the recording on YouTube: What factors have impacted on older people’s (75+) access/experience of public services during COVID-19? A rapid evidence review and series of qualitative interviews with older adults

Speakers: Dr Annemarie Money and Dr Alex Hall, The University of Manchester

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 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 on YouTube: SMARThealth – Personalised digital management of cardiovascular diseases in low-middle income countries: personal survival, community engagement and public outcome.

Speaker: Dr Gindo Tampubolon, The University of Manchester

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:

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 on YouTube: The many faces of inequality in a digitised world: thoughts on deprivation, devices, data, deception, disruption & amp; dialogue.

Speaker: Dr Claudia Pagliari (University of Edinburgh)

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:

Claudia is senior lecturer in primary care and informatics 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 on YouTube: Why the poor die young: the role of digital inequalities.

Speaker: Prof Arpana Verma (University of Manchester)

Speaker Bio:

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.