Citizens Advisory Group
Discover-NOW has previously brought together a Citizens Advisory Group to explore, discuss and deliberate key issues, and to make recommendations to support future decision-making and policy development. This forms part of our commitment to ensure we’re continuing to build public trust in how we handle data.
Participants in the Citizens Advisory Group (CAG) were reflective of the North West London population. The CAG was run in partnership with Ipsos, our design and delivery partner.
Overview
Discover-NOW, the London Secure Data Environment, aims to revolutionise the way health data is used responsibly for research into treating and preventing disease.
We are underpinned and governed by robust information governance arrangements. The Discover-NOW team supports the navigation of data access requests to the trusted research environment as set out in the latest guidance published by HDRUK. Every data access request is reviewed by the NWL Data Access Committee who act on behalf of the North West London data controllers.
Discover-NOW will only realise our ambition and the potential benefit to millions of people if we have the support, confidence and trust of our communities. We are committed to engaging patients and the public in a meaningful way. We are therefore proud to have partnered with OneLondon Local Health and Care Record Exemplar (LHCRE) programme which carried out one of the UK’s most progressive large-scale public deliberation events on the use of health and care data.
Citizen Advisory Group
Discover-NOW is committed to ensuring that all current and future ways of working reflect and embed the recommendations made by the public through the OneLondon deliberation.
As such, we brought together a Citizens Advisory Group (CAG) to inform and make recommendations to support future decision-making and policy development.
The CAG first came together over the course of 2021, in a set of deliberations (similar in style to the OneLondon Citizens’ Summit) to explore, discuss and deliberate key dilemmas facing Discover-NOW.
CAG steering group
To ensure that the deliberation process, content and direction was authentic and balanced, Discover-NOW set up a virtual CAG Steering Group to underpin this work and to act as an advisory critical friend. This Group provided challenge and scrutiny through regular review meetings.
It comprised public representatives, clinical, information governance and business intelligence colleagues from across North West London, alongside industry partners.
First CAG deliberation
The deliberation consisted of two virtual workshops in February 2021, comprising c40 people recruited to reflect the North West London population. Each workshop lasted three hours and included a combination of informative expert presentations and moderated group discussions in which smaller groups of around six participants reviewed stimulus materials and deliberated their views, experiences and expectations.
These first workshops explored the deliberation question of: “What conditions need to be in place for non-NHS partners (universities, industry, charities) to have access to health and care data in a trusted research environment?”
In developing our trusted research environment we wanted to explore public expectations in order to shape policy that will enable this to happen in the future.
Results
In March 2021 Discover-NOW published a report setting out the recommendations and conditions formed by the CAG, including how and why they reached these decisions.
Areas covered included:
- Expectations concerning access
- Governance
- Access Criteria
- Expectations concerning controls
- Linking with other trusted research environments
- Ensuring safe outputs
- What data can be accessed
Second CAG deliberation
The second deliberation was structured the same as the first, consisting of two virtual workshops during May 2021, made up of the same c40 people recruited to reflect the North West London population. Each workshop again lasted three hours and included a combination of informative expert presentations and moderated group discussions in which smaller groups of around six participants reviewed stimulus materials and deliberated their views, experiences and expectations.
These workshops explored the deliberation question of: “How should the value of Discover-NOW’s health and care data for research be realised and distributed?
Results
In June 2021 Discover-NOW published a report setting out the expectations and principles formed by the CAG for the second deliberation, including how and why they reached these decisions.
They discussed the topic of any surplus created by Discover-NOW, and how and when this should be used. Three themes emerged:
Greatest Impact
- Any future surplus should be allocated to the areas where there is potential for the greatest impact
Robust, transparent process
- In deciding where any surplus should go (based on the principle of greatest impact), there must be a robust and transparent decision making process, which involves the right people (including patients).
Address local issues
- In allocating future surplus, the driving factor for how the funds will be used should be the ability to address local issues.
Expectations on fair value
First and foremost, any agreements made about the value of working with Discover-NOW are for the benefit of the public. In workshop two, participants were introduced to five different value exchange models (see full report). Across all options, participants remarked upon their legal, commercial and technical complexity.
Across the groups there were consistent value exchange expectations:
- Every value exchange model should incorporate an upfront access fee
- The tiered pricing model should remain in place
- One size does not fit all and options are not mutually exclusive
- Discover-NOW should enter into realistic arrangements
Next steps
The work of the CAG continues to directly influence how data is used and accessed for research purposes in North West London. The report and recommendations have been shared and were well received by the Discover-NOW Board with support to embed and align to the recommendations. Specifically:
- Refining the criteria for data access requests to ensure that data access requests reflect what is important to the CAG
- Reviewing the membership of the NWL region’s existing data access committee to ensure it reflects the recommendations of the CAG
- Steering the development of its new trusted research environment and how this could be used safely with other datasets.
- Using the findings to inform Discover-NOW’s future commercial policy.
This work is viewed as a huge step forward in influencing and shaping how non-NHS organisations will access depersonalised data in a trusted way. As such, these findings are also being shared on a larger scale across our networks in North West London and with the other Health Data Research Hubs nationally.