Pandemic Data Sharing Citizens’ Juries

Image by Markus Spiske via Unsplash

Between March and May 2021 the Center for New Democratic Processes, in partnership with Citizens Juries cic, conducted the Pandemic Data Sharing Citizens’ Juries project. This series of three online juries focused on data sharing initiatives implemented in England in response to the COVID-19 pandemic.

Background & Context

The rapid deployment of technology (such as contact tracing and exposure notification apps) has played a central role in shaping global, national, and local responses to the COVID-19 pandemic. This is also true of the widespread collection, storage, and processing of vast amounts of data. The use and sharing of data, particularly health data and patient records, as part of these data sharing initiatives has brought forth a host of ethical and legal questions. Particularly difficult questions focus on how, where, and under what conditions it is acceptable to share data to respond to a public health emergency. Even more complex and thorny ethical and legal questions loom on the horizon. These include what the post-pandemic future of COVID-19 era data initiatives should be, how long they should last, how they might be changed, and by whom decisions about these initiatives should ultimately be made.

The Pandemic Data Sharing Citizens’ Juries were commissioned and funded by the University of Manchester, NHS England, and the National Data Guardian. Funding for these juries was secured from the National Institute for Health Research Applied Research Collaboration (ARC).  This funding brought together researchers, health and care providers, patients, and communities to deliver large programs of research.

Partners & Funders

Commissioning Bodies – Funders: University of Manchester; NHS England (NHS X, a UK Government unit with responsibility for setting national policy and developing best practice for National Health Service technology, digital and data, including data sharing and transparency); the National Data Guardian (an entity that advises and challenges the health and care system to help ensure that citizens’ confidential information is safeguarded securely and used properly).

Project Collaborators (non-funding members of Commissioning Group): Wellcome Trust, Ada Lovelace Institute. Representatives from the Wellcome Trust and the Ada Lovelace Institute contributed to the Commissioning Group as non-funding collaborators.

Citizens’ Juries – Deliberative Process

This Pandemic Data Sharing Citizens’ Juries examined five data initiatives that emerged during the COVID-19 pandemic. Jurors assessed the implementation of the initiatives during the pandemic and considered the future of each initiative.

The juries considered three pandemic data initiatives:

• Summary Care Record additional information (which was extended to include more data about patients during the pandemic)
• NHS Covid-19 Data Store and Platform (which was created in response to the pandemic) and two sub-case studies which utilize the Data Store
  • The Early Warning System
  • The Immunisation and Vaccination Management (I&V) Capability.
• OpenSAFELY (which uses primary care data for research).

Jurors learned what a patient record is, how they are used, and how patient records are anonymized and protected. Experts also outlined normal rules for sharing and protecting data and how normal rules for sharing data changed during the pandemic. For each data initiative under consideration, jurors learned what it is, how data is being used and for what purpose. Jurors also explored potential benefits and potential risks associated with these uses.

Jurors were then asked to consider:

1. their support for the data initiative;
2. what the future of the initiative should be (how long should it continue, by whom decisions about its future should be made, any possible changes or adjustments, etc.,);
3. What lessons might be learned from these initiatives that might be applicable for future data initiatives.

Citizens Juries’ Report & Recaps

Pandemic Data Sharing Citizens’ Juries Report

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Video: Citizens Juries on Pandemic Data Sharing

NATIONAL DATA GUARDIAN RESPONDS TO CITIZENS’ JURIES’ FINDINGS

Dr. Nicola Byrne recently penned an article titled “The Importance of Active Listening and Changing” where she reacted to the recent report and cited the Pandemic Data Sharing Citizens Juries as a success story. Dr. Nicole Byrne is the UK National Data Guardian, a national governmental organization that advises and challenges the health and care system to help ensure that citizens’ confidential information is safeguarded securely and used properly.

For more:

You can continue to follow the latest updates here or on our social media channels (Twitter, Facebook, Linkedin) as they are available. If you are interested in learning more about this project or are considering engagement on a technology or data policy topic contact hello@cndp.us to explore partnership possibilities.