Citizens' Jury on QCovid: Report on the jury's conclusions and key findings

3. The jury's conclusions

The deliberative discussions of the Citizens' Jury facilitated a genuine conversation that empowered participants to explore the levels of acceptability of risk prediction models such as QCovid®, and the different tools that could be deployed. These discussions were analysed and presented back to participants as principles and "red lines", with principles being guidance for Scottish Government to use if implementing this particular tool, and "red lines" being lines that, if crossed, would make the use of this tool unacceptable. These principles and red lines can be applied to future, similar, tools.

Overarching themes: QCovid® model and use of health data for risk prediction models

Prior to their involvement in the Citizens' Jury, participants generally had low awareness of how public health data had been used in the Scottish Government's management of Covid-19. Nonetheless, there was a sense of reassurance about the Scottish Government's use of data and evidence to inform decision-making and planning related to the pandemic.

"[The Scottish Government's] expediency in making decisions and not being too quick to reverse decisions. It always reassured the public they were using science and not other factors, like economics."

(Participant in session 1)

Having learned about QCovid® as a risk prediction model, and deliberated its relative risks and benefits, some clear themes emerged which cut across each of the tools. These were:

Efficacy and accuracy

The jury generally felt reassured by the fact that the QCovid® model had been extensively validated by experts. There remained some concerns over the completeness of the data underlying the QCovid® model and the impact of gaps in medical records - such as information on ethnicity or through some health conditions not being known to the GP - potentially leading to inaccurate scores. The jury therefore emphasised the need for QCovid® or a similar model to be kept up-to-date and capable of adapting to changing circumstances such as new variants or booster vaccines.

Data security

The jury recognised that there were clear protocols in place for accessing public health data and felt that data security should be in place for any use of the model, but particularly when using non-anonymised data at the population level.

Transparency and communication

The reasons for applying a risk prediction model were understood and generally accepted by the jury. However, it was strongly agreed that clear communication would be necessary for informing the general public about the rationale for using QCovid® or similar risk prediction models in Scotland and explaining how this is done. This level of transparency was considered important for building public trust in the model.

Targeted support

There was clear consensus among the jury that sufficient and targeted support mechanisms must be in place. These mechanisms would need to include emotional support (particularly for those receiving a high score), support to interpret what the score means, and practical support to help people take appropriate action.

Justification

Attitudes towards risk prediction models could vary depending on the status of a virus like Covid-19. For example, in a low prevalence situation, there was a view that a clear rationale from the Scottish Government would be needed to justify its use.

The principles and "red lines" for each tool, edited directly by participants in four breakout groups in the final workshop, are summarised below. The full wording, as well as the edits made by each group, can be found in the appendix.

Clinical tool

Principles: Use of the tool is acceptable if…

• Information is provided to explain to patients what the tool is and how it will be used.
• It is communicated why this tool is available.
• Practical and emotional support is provided to help patients according to their risk score.
• GPs (or other healthcare professionals) can help patients understand their risk score.
• GP resources are not placed under too much burden.
• GPs (or other healthcare professionals) are trained to use the tool effectively.
• Patients have the option to ask for their score (and to refuse the option to discover their score).
• Results are confidential.
• The tool is kept up to date in case of people moving from low risk to high risk (and vice versa).

Red lines: Use of the tool is unacceptable if…

• It collects personal information which is not needed for the tool to work.
• The data is kept after you've received your score.
• If it detracts from GPs' ability to address other, more critical, health needs.
• If your score is shared with other parties (i.e., anyone other than your GP) without your consent.

Public-facing tool

Principles: Use of the tool is acceptable if…

• There is sufficient support in place to help people understand their risk score.
• It is accessible (e.g., alternative formats – language translations, large print, braille or text to speech, and simple language).
• There are alternative ways of accessing the score for those who are not online or who require additional support.
• There is clear, simple guidance for using the tool and there are consequences for misuse.
• The tool is kept up to date in case of people moving from low risk to high risk (and vice versa).

Red lines: Use of the tool is unacceptable if…

• There is not adequate support in place to help people understand their score.
• It is introduced on its own (without the clinical tool being available).
• There is no alternative for people excluded from using an online tool.
• The information an individual inputs can be accessed and/or used by anyone else.
• Identifiable information is requested and/or stored.
• It doesn't reach everyone who needs it.
• There is any obligation for people to pass on information about their risk score.
• It cannot be guaranteed that the data put in is accurate.

Population-level tool (using non-anonymised data)

Principles: Use of the tool is acceptable if…

• There is sufficient targeted support in place to help people at high risk.
• There is clear information about the sources of support available and that support is easy to access
• Information about the use of the tool is available and clearly communicated to the general public.
• The score is confidentially to the individual, with no legal requirement to share.
• The tool is kept up to date in case of people moving from low risk to high risk (and vice versa).
• There is a mechanism to challenge or change the outcome.
• There are data security protocols in place.

Red lines: Use of the tool is unacceptable if…

• Data about individuals is shared with third parties for purposes that do not align with healthcare-related public benefits relating to the pandemic.
• There is not adequate ongoing support in place to help people who are identified as being at high risk.
• The data is not held securely.
• The risk to public health from Covid-19, or another virus, at the time is minimal.
• It is used to discriminate against individuals (e.g., in the workplace or in accessing services such as insurance).

Population-level tool (using anonymised data)

Principles: Use of the tool is acceptable if…

• Information about the tool is available and clearly communicated to the general public.
• The tool is kept up to date in case of people moving from low risk to high risk (and vice versa).
• The data is agile and able to adapt as new situations arise.
• The data is to be used by Scottish Government and NHS Scotland only.
• There are data security protocols in place.

Red lines: Use of the tool is unacceptable if…

• Data is shared with third parties for purposes that do not align with healthcare-related public benefits relating to the pandemic.
• Data is not protected from commercial companies accessing it.
• There is any collaboration with data farm companies.^[8]
• It is used to discriminate against certain groups (e.g., being denied access to certain services based on age or ethnicity).