Personal Data Ecosystems in Decentralised Clinical Trials

Helen  Oliver; Mohamed Ragab Moawad Mohamed; Mohammad Bahrani; Alex Alexandra Poulovassilis; Thanassis Tiropanis; Adriane Chapman; George Roussos

doi:10.1109/PerComWorkshops68308.2026.11585393

Personal Data Ecosystems in Decentralised Clinical Trials

Helen Oliver
, Mohamed Ragab Moawad Mohamed
, Mohammad Bahrani
, Alex Alexandra Poulovassilis
, Thanassis Tiropanis
, Adriane Chapman
, George Roussos

Department of Computer Science

University of Southampton
Birkbeck University of London

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution › peer-review

Abstract

The organisation-centric model of data management arguably constrains portability, transparency, and individual agency, limitations that are particularly acute in health research. This paper explores Personal Data Ecosystems (PDEs) as an alternative, specifically within the context of participant discovery for decentralised clinical trials. Building on the ESPRESSO framework for Efficient Search over Personal Repositories – Secure and Sovereign, we explore a decentralised search mechanism that employs Personal Online Datastores (PODs) to facilitate data aggregation and selective sharing, thereby enforcing differential visibility and fine-grained access control. We discuss the performance of this system in the context of privacy-preserving keyword queries across metropolitan-scale cohorts, aiming to merge authoritative centralised records with POD-based streams derived from user-provided wearable and …

Original language	English
Title of host publication	2026 IEEE International Conference on Pervasive Computing and Communications Workshops and other Affiliated Events (PerCom Workshops)
Publisher	IEEE
Pages	1-6
ISBN (Electronic)	9798331576158
ISBN (Print)	9798331576165
DOIs	https://doi.org/10.1109/PerComWorkshops68308.2026.11585393
Publication status	Published (VoR) - 2 Jul 2026

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Oliver, H., Mohamed, M. R. M., Bahrani, M., Alexandra Poulovassilis, A., Tiropanis, T., Chapman, A., & Roussos, G. (2026). Personal Data Ecosystems in Decentralised Clinical Trials. In 2026 IEEE International Conference on Pervasive Computing and Communications Workshops and other Affiliated Events (PerCom Workshops) (pp. 1-6). IEEE. https://doi.org/10.1109/PerComWorkshops68308.2026.11585393

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title = "Personal Data Ecosystems in Decentralised Clinical Trials",

abstract = "The organisation-centric model of data management arguably constrains portability, transparency, and individual agency, limitations that are particularly acute in health research. This paper explores Personal Data Ecosystems (PDEs) as an alternative, specifically within the context of participant discovery for decentralised clinical trials. Building on the ESPRESSO framework for Efficient Search over Personal Repositories {\textendash} Secure and Sovereign, we explore a decentralised search mechanism that employs Personal Online Datastores (PODs) to facilitate data aggregation and selective sharing, thereby enforcing differential visibility and fine-grained access control. We discuss the performance of this system in the context of privacy-preserving keyword queries across metropolitan-scale cohorts, aiming to merge authoritative centralised records with POD-based streams derived from user-provided wearable and …",

author = "Helen Oliver and Mohamed, \{Mohamed Ragab Moawad\} and Mohammad Bahrani and \{Alexandra Poulovassilis\}, Alex and Thanassis Tiropanis and Adriane Chapman and George Roussos",

year = "2026",

month = jul,

day = "2",

doi = "10.1109/PerComWorkshops68308.2026.11585393",

language = "English",

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booktitle = "2026 IEEE International Conference on Pervasive Computing and Communications Workshops and other Affiliated Events (PerCom Workshops)",

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Oliver, H, Mohamed, MRM, Bahrani, M, Alexandra Poulovassilis, A, Tiropanis, T, Chapman, A & Roussos, G 2026, Personal Data Ecosystems in Decentralised Clinical Trials. in 2026 IEEE International Conference on Pervasive Computing and Communications Workshops and other Affiliated Events (PerCom Workshops). IEEE, pp. 1-6. https://doi.org/10.1109/PerComWorkshops68308.2026.11585393

Personal Data Ecosystems in Decentralised Clinical Trials. / Oliver, Helen ; Mohamed, Mohamed Ragab Moawad; Bahrani, Mohammad et al.
2026 IEEE International Conference on Pervasive Computing and Communications Workshops and other Affiliated Events (PerCom Workshops). IEEE, 2026. p. 1-6.

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution › peer-review

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Personal Data Ecosystems in Decentralised Clinical Trials

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