Discover-NOW Citizen Advisory Group (CAG)

Discover-NOW, the Health Data Research Hub for Real World Evidence, aims to revolutionise the way health data is used responsibly for research into treating and preventing disease.

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.

Discover-NOW is committed to ensuring that all our current and future ways of working reflect and embed the recommendations made by the public through this deliberation. This is particularly evident through the formation of a Citizens Advisory Group (CAG) that is forming part of the Hub’s governance structure and future decision making and policy development.

We have partnered with Ipsos MORI as CAG design and delivery partners and together are advancing this approach with participants reflective of the North West London population. The group have come together during the year in a set of deliberations (similar in style to the OneLondon Citizens Summit) to explore, discuss and deliberate key dilemmas facing the Hub.

To ensure that the deliberation process, content and direction is 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 has provided challenge and scrutiny through regular review meetings.

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?”

Discover-NOW does not currently provide this type of access but 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.

In March 2021 Discover-NOW published a report setting out the recommendations and conditions formed by the North West Londoners at 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

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?

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.

 Expectations on surplus

Currently any funds generated from accessing data are used to recover costs from initial investments, in the future there may be a surplus generated and Discover-NOW wants to ensure any surplus and valued gained is used in line with public expectations.

Across the groups three clear and consistent underlying principles emerged on how any future surplus should be distributed:

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.

In situations where the surplus would potentially be large enough (i.e. a significant amount), there was support from the CAG to reinvest this back into the development of the data asset and support for the surplus to go back into the NHS.

In situations where the surplus would potentially be smaller, there was unanimous support for this to be distributed to the areas that need it most, and where it will have the greatest impact on local people. For example, a research fund, which was liked for its ability to tackle local issues and to community groups or charities or through public health initiatives focussed on prevention.

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

Most groups felt as though there should always be an access fee charged up front as part of the value exchange model. However, this could be refunded if charged, if the product was successful.

• The tiered pricing model should remain in place

Tiered pricing means different pricing for different organisations; for example, a large pharmaceutical company might pay more than a small charity. Most groups expressed the importance of ensuring that any value exchange model that Discover-NOW uses does not prohibit smaller organisations. This could be achieved through the existing tiered pricing model and Discover-NOW should consider how models are implemented to ensure that this is honoured.

• One size does not fit all and options are not mutually exclusive

Across the groups, there was support for Discover-NOW utilising a range of value exchange models. Where certain models for particular arrangements are going to be too restrictive for Discover-NOW, others might work better. Likewise a model might work for one commercial organisation, but not another. Overall, the one-off payment, multiple one-off fees and royalty/profit share options were more favourable although this wasn’t the case across all groups.

• Discover-NOW should enter into realistic arrangements

There was more support for a share in royalties, as opposed to a share in equity, given this felt more tangible to the groups, easier to measure and less risky for the NHS.

The work of the CAG is already directly influencing 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 accessrequests to ensure that data access requests reflect what is important to the CAG
• Reviewing the membership of the NWL region’s existing data access committeeto ensure it reflects the recommendations of the CAG
• Steering the development of its new Trusted Research Environmentand how this could be used safely with other datasets.
• Using the findings to informing 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 all the other Health Data Research Hubs nationally.