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The University of Southampton
Web Science Institute

HSCT 2021: Web Sci'21 Workshop

Theme

Joined Up Data Equals Better Care: Facilitating Health and Social Care Transformation through Trustworthy and Collaborative Data Sharing

Overview

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.

Motivation for this workshop

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].

List of Topics

We invite short position papers (maximum 2 pages) and discussion from researchers and practitioners on this non-exhaustive list of topics:

  • Case studies of citizen engagement and representation; e.g., measures to ensure that citizen representation remains meaningful and inclusive;
  • Legal, ethical and repeatable mechanisms or structures to support trustworthy, collaborative sharing of regulated data and associated insights generated;
  • Trustworthiness-enabling technologies that underpin collaborative data sharing across the life course of a research project and/or innovation activity;
  • Understanding what ‘health and social care transformation; means for different stakeholders;
  • Reflections on positive and negative externalities of multi-party data sharing initiatives, e.g., data monopolies, increased surveillance, greater transparency;
  • Lessons from established (and former) multi-party data sharing initiatives.

Schedule

The duration of the workshop will be 3 hours 15 minutes, and structured as follows:

  1. Dial-in, welcome, and introduction to the workshop by the organisers. Duration: 15 minutes.
  2. Keynote no 1. from an external expert to be confirmed shortly. Duration: 30 minutes.
  3. Short paper presentation no. 1. Duration: 15 minutes.
  4. Short paper presentation no. 2. Duration: 15 minutes.
  5. Keynote no 2. from an external expert to be confirmed shortly. Duration: 30 minutes.
  6. Coffee break. Duration: 15 minutes.
  7. Interactive discussion: The state of the art, challenges, and future research directions for trustworthy, collaborative sharing of regulated data and generated insights. Duration: 1 hour.
  8. Closing statement: Summary of discussion, and next steps given by the organisers. Duration: 15 minutes.

Submission guidelines

  • Papers submitted to the workshop must be original, and no longer than 2 pages (not including references).
  • The authors shall adopt the current ACM SIG Conference proceedings template (acmart.cls).
  • Please submit papers as PDF files using the ACM Submission template (single column).
  • Papers must be submitted to EasyChair by 23 April 2021.
  • The organising committee will evaluate submissions based on their originality, quality, and relevance to the workshop through a single-blind peer review process. Do not anonymise your submissions, as submissions without authorship information will be desk-rejected without review.
  • Please note that any papers received after the submission deadline may be accepted, but will not appear in the conference proceedings.
  • The outcomes from the workshop group discussions will be included on the WSI website as a blog post after the conference.
  • The co-organising committee may also decide to produce a paper or conference submission about stakeholder perceptions of trusted research environments (TREs) based on these workshop group discussions.

Important dates

  • April 23, 2021 – Deadline for submission of position papers
  • May 6, 2021 – Notification of acceptance/rejection
  • June 21-22, 2021 - Workshops and Tutorials

Organising committee

  • Prof Michael Boniface is a Professorial Fellow of Information Systems in the School of Electronics and Computer Science, University of Southampton and Director of the University of Southampton, IT Innovation Centre.
  • Prof Dame Wendy Hall, DBE, FRS, FREng is Regius Professor of Computer Science, Associate Vice President (International Engagement) and is an Executive Director of the Web Science Institute at the University of Southampton.
  • Prof Sophie Stalla-Bourdillon is a Professor in Information Technology Law and Data Governance within Southampton Law School and a Senior Privacy Counsel; Legal Engineer at Immuta.
  • Dr Brian Pickering is a Senior Research Fellow in the School of Electronics and Computer Science, University of Southampton.
  • Dr Steve Taylor is a Senior Research Engineer at the University of Southampton.
  • Dr Laura Carmichael is a Web Science Research Fellow at the University of Southampton.
  • Jack Hardinges is the Programme Lead for Data Institutions at the Open Data Institute (ODI).

Date and Venue

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.

Registration information

For venue and registration information, please see the WebSci’21 website.

Contact

All questions about the workshop and submissions should be emailed to Laura Carmichael:L.E.Carmichael@soton.ac.uk

Acknowledgments

Acknowledgments

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/

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