Joined Up Data Equals Better Care: Facilitating Health and Social Care Transformation through Trustworthy and Collaborative Data Sharing
To realise the benefits of health and social care transformation for communities and individuals, we need strong multi-disciplinary and cross-organisational understanding of how data sharing initiatives – both existing and emerging (e.g., data collaboratives, data foundations, data trusts)
– support multi-party sharing of regulated data in ways that are socially acceptable, trustworthy, sustainable, and scalable.
The workshop will provide a forum for discussion by bringing together a multi-disciplinary group of researchers and practitioners with a wide-range of specialisms – e.g., health care and social care practice, cyber-security, data governance, (health) data science, ethics, law, public health planning and policy, technology and innovation – to explore the state of the art, challenges, and future research directions for trustworthy and collaborative sharing of regulated data, as well as the insights generated from these activities.
The Web has contributed to a diversification of ‘health and social care data’ (e.g., see [1]) by providing for greater opportunities to discover, access, and (re)use more traditional data types – e.g., public health statistics, birth cohorts datasets – and non-traditional data types – e.g.,
behavioural data derived from social media activities, data gathered from wearable devices for health, well-being, and fitness. Turning the wealth of health and social data into insights to promote better public health, whilst enabling more effective personalised care, is critically important
for society. Yet, more remains to be done to incentivise, accelerate, and join up sharing of regulated data, and the utilisation of generated outputs, safely [2], [3], [4] amongst stakeholders – e.g., health care providers, social care providers, researchers, public health authorities, citizens – a point
accentuated by the extraordinary situation of the global COVID-19 pandemic (e.g., see [4]).
In managing such diverse but highly sensitive datasets, trustworthy governance is essential not only to ensure data owners can fulfil their regulatory obligations but also to maintain public confidence and engagement [5]. A key motivation for this workshop therefore stems from our recent work (the
University of Southampton workshop co-organisers), as part of an interdisciplinary project, to establish the Social Data Foundation for Health and Social Care (SDF) [6]. The SDF is a new form of data institution that aims to improve health and social care by accelerated access to linked data from
citizens, local authorities, and health and social care providers within a trusted research environment embedding the ‘5 Safes plus 1’ approach [2].
We invite short position papers (maximum 2 pages) and discussion from researchers and practitioners on this non-exhaustive list of topics:
| 09:30-09:45 | Welcome and introduction from Wendy Hall and Michael Boniface |
| 09:45-10:15 | Keynote speech no. 1: ‘Research data sharing and re-use: If we knew then what we know now, will we do it differently?’ Presented by Hilary Hanahoe, Secretary General of the Research Data Alliance |
| 10:15-10:30 | Short accepted position paper. ‘Digital transformations in Domestic Abuse support: implications for data sharing’ by Rebecca Taylor, Bea Gardner and Mark Weal. Presented by Rebecca Taylor, Sociologist of Work and Organisations in the Department of Sociology, Social Policy and Criminology, University of Southampton, UK |
| 10-MINUTE COFFEE BREAK | |
| 10:40-11:10 | Keynote speech no. 2. ‘The International COVID-19 Data Alliance (ICODA): lessons from the first year.’ Presented by Nicola Perrin, Health Data Research UK |
| 11:10-11:25 | Invited short presentation. ‘Data sharing for clinical research – challenges and opportunities.’ Presented by Gustav Nilsonne, Associate Professor of Neuroscience at Karolinska Institutet, Sweden |
| 11:25-11:40 | Short workshop presentation. An overview of the Social Data Foundation for Health and Social Care. Presented by Laura Carmichael, Research Fellow, IT Innovation, University of Southampton |
| 10-MINUTE COFFEE BREAK | |
| 11:50-12:35 | Interactive panel discussion on the state of the art, challenges, and future research directions for trustworthy, collaborative sharing of regulated data and generated insights. Panel: all speakers. Chair: Sophie Stalla-Bourdillon |
| 12:35-12:45 | Closing statement. Summary of discussion and next steps given by Sophie Stalla-Bourdillon |
The workshop will be delivered online – the WebSci’21 conference is organised by the University of Southampton, UK. The workshop will be approx. 3 hours 15 minutes in duration, and will be held on either 21st or 22nd June 2021.
The exact date and time of the workshop will be confirmed shortly.
For venue and registration information, please see the WebSci’21 website.
All questions about the workshop and submissions should be emailed to Laura Carmichael:L.E.Carmichael@soton.ac.uk
The Social Data Foundation (SDF) Project is partly funded and supported by the University of Southampton’s Web Science Institute (WSI) and Southampton Connect.
References
[1] Tamar Sharon and Federica Lucivero. 2019. Introduction to the Special Theme: The expansion of the health data ecosystem – Rethinking data ethics and governance. Big Data & Society. https://doi.org/10.1177/2053951719852969
[2] UK Health Data Research Alliance. Trusted Research Environments (TRE): A strategy to build public trust and meet changing health data science needs. Green Paper v2.0 dated 21 July 2020. Retrieved March 5, 2021
from https://ukhealthdata.org/wp-content/uploads/2020/07/200723-Alliance-Board_Paper-E_TRE-Green-Paper.pdf
[3] UK Data Service. Regulating access to data: 5 Safes. Retrieved March 5, 2021 from https://www.ukdataservice.ac.uk/manage-data/legal-ethical/access-control/five-safes
[4] Research Data Alliance (RDA) Covid-19 Working Group. 2020. RDA COVID-19; Recommendations and Guidelines on Data Sharing, Final release 30 June 2020. https://doi.org/10.15497/rda00052
[5] Sophie Stalla-Bourdillon, Laura Carmichael and Alexsis Wintour. 2021. Fostering trustworthy data sharing: Establishing data foundations in practice. Data & Policy. https://doi.org/10.1017/dap.2020.24
[6] Michael Boniface, Laura Carmichael, Wendy Hall, Brian Pickering, Sophie Stalla-Bourdillon and Steve Taylor. 2020. A Blueprint for a Social Data Foundation: Accelerating Trustworthy and Collaborative Data Sharing for Health and Social Care
Transformation. Web Science Institute (WSI) White Paper #4. Retrieved February 19, 2021 from www.socialdatafoundation.org/