What is the Confidentiality Advice Group (CAG)?
The CAG is an advisory committee and delivers an important role set out in legislation and managed by the Health Research Authority (HRA). It considers applications to access confidential patient information without consent under the NHS Act 2006 and the Health Service (Control of Patient Information Regulations) 2002.
Patient and service user data can help our understanding of health and care but accessing it without consent is a privilege and needs to be carefully managed. CAG considers applications focusing on patient privacy and how data can be used appropriately to give the public confidence.
Applications are varied, relating to both research and non-research activities, and come from academic, NHS, local government, government bodies and national organisations. The CAG considers these applications and provides its independent advice. This advice is used by decision-makers to help them decide which applications to support. The Health Research Authority makes decisions about research applications and the Secretary of State for Health and Social Care makes decisions about non-research applications.
Where an application is supported, data can be disclosed to specified people without a breach of the common law duty of confidentiality. CAG acts as an important and independent safeguard, as part of a broader system, to help improve public confidence in the appropriate use of data.
The CAG consists of:
- a maximum of 30 members
- lay members (people with an interest in and experience of healthcare; as a patient, a service user or a carer)
- expert members (people with professional expertise as a healthcare professional, in health research or information governance). Some of our expert members are also part of the CAG chair team. The chair team consists of a chair, a vice chair and three alternate vice chairs.
Although there are different classifications (i.e. expert and lay), everyone’s role on the committee is the same. CAG reviews approximately 150 applications a year.
The process of a CAG review
For each meeting that you are involved in you will receive an application form and supporting documents that detail the activity and why an application has been made. All applications will be to use identifiable patient information without consent. Activities may be for research or non-research, but all will have a medical purpose.
As part of the review, CAG will consider:
- why patients cannot consent to the activity, or why the use of anonymised data cannot instead be used, as this would be preferable
- whether the proposed outcomes will deliver benefits to the wider patient population, and that these benefits outweigh the use of identifiable patient data without consent
- that the applicant has involved patients and the public to test the acceptability of using identifiable patient information without consent
- whether the applicant will use appropriate routes to notify the patient population of the activity, and giving them the chance to opt out of their data being used.
The CAG will advise the decision-maker of the proposed outcome. If an application is supported, identifiable patient information can be used legally within the defined purposes.
Qualities required for the role of lay and expert members
To help you decide if you'd like to apply to be a CAG member, please look at the criteria below that we use when assessing candidates. To be considered, you must be able to demonstrate that you have the qualities, skills and experience to meet the criteria.
We are looking for people:
- with the ability to read, understand and analyse research and non-research applications for access to identifiable patient information without patient consent and weigh up conflicting opinions
- who are good communicators with a practical approach, ability to present a relevant, concise and evidenced recommendation and the confidence to voice their opinions
- who are able to take an objective stance, looking at a situation from different perspectives
- who are able to discuss issues with people who may not agree with them including being able to influence and listen to the views of others from a range of backgrounds
- who have an understanding of the sensitivities about using identifiable patient information without consent to support research and non-research
- who can demonstrate an ability to contribute to the work of the CAG
- who are committed and available to attend CAG meetings and review proportionate review applications outside the full meeting schedule, and to be aware of time required to develop own learning
- who are willing to attend two ‘away days’ each year to equip themselves for the role of a CAG member. Also to attend induction training within the first six months of appointment and to complete online equality and diversity training within the first 12 months of appointment
- who are IT literate to allow CAG work to be carried out electronically. It is essential for members to have access to a computer, laptop or tablet in order to be able to review applications and amendments electronically via the member portal
- who are committed to the public service values of accountability, probity, openness and equality of opportunity.
Some questions you may have:
How much time is involved?
Meetings are generally held on a fortnightly basis from 10am to 2pm. Each meeting typically needs three to four hours reading in advance depending on how complex applications are. You will be allocated a specific number of applications to lead on and will be a reviewer for a specified number of applications.
You can also expect to review approximately one or two precedent-set review applications or amendments every couple of months, depending on the nature of the application and member expertise. These are applications which meet agreed criteria that can be reviewed outside a full meeting.
You need to attend at least seven full meetings as a condition of membership. Members typically attend no less than nine meetings per year which helps develop their knowledge.
As your knowledge and confidence is developing, it will initially take longer to review applications in detail.
Where will meetings be held?
Meetings will be held via Zoom. Due to the expertise that each of our members bring, it will not be possible to send a deputy in your place.
Precedent-set reviews and amendment considerations are done via email and you would be expected to respond within set timescales.
We hold two ‘away days’ per year, face to face in London. This provides an opportunity for members to discuss and learn about current important issues. It is also a chance to meet fellow members socially.
Who else is on the Confidentiality Advisory Group?
Our membership is taken from people in all walks of life who are representative of the community and general population, whether employed, unemployed or retired. There are also legal specialists, clinicians, researchers and public health specialists on the group.
All our members are passionate about the role of the CAG and the importance of protecting patient data confidentiality. You can read more about our CAG members.
Will I be able to continue with my current job?
This depends on your current employer’s policy on volunteering and being appointed to roles in other organisations. Meetings are held during the working day so you would need to balance this with your current work.
If you are in receipt of certain state benefits you may want to check whether volunteering for us would affect your entitlement. We want to include people in receipt of benefits in our work so please let us know if there is an issue. We may be able to adjust our offer to you, to comply with your benefit conditions.
Will my organisation support my attendance at the meetings?
CAG meetings are held during the working day. Some employers may allow you time to attend the meetings, but you should check this with your line manager or employing authority. Most organisations appreciate the valuable work of national committees such as CAG. Membership is often recognised in professional development planning such as consultant job plans.
What is my legal position?
It is very rare for there to be any legal action taken over the advice given by our CAG committee. Just in case, any member acting responsibly within the committee is ‘indemnified’ by the Health Research Authority. That means we will protect our members against civil action that might arise from the business of the committee. This is with the proviso that the member informs us and co-operates if any claim is made against them, and has not acted in bad faith, wilfully defaulted on their responsibilities or been grossly negligent.
How long would I serve as a member?
A term of office is generally five years although this depends on recruitment cycles and is agreed upon appointment. Terms of appointment may be renewed upon mutual agreement.
Will training be provided?
Full training is provided for all new members in the basic framework of the regulations.
You will be expected to attend an induction before you start. It is anticipated that this will be held virtually via Zoom. The induction will help you understand the legal framework, the CAG role and evolving responsibilities and provides an opportunity for you to ask questions.
While training is provided during the induction session, regular attendance at meetings is the best way to develop knowledge and understand how it is applied to the regulations. You can be allocated a mentor to assist with initial queries when reviewing applications.
You are also expected to attend at least one training ‘away day’ event per year.
Will I be able to claim expenses?
Any travel costs or other agreed expenses incurred while you are carrying out your CAG duties will be reimbursed in accordance with our policies. We will typically book all travel and accommodation requirements for you. All payments are made by BACs and in line with our expenses policy.
Who would I be representing?
Members of CAG are not appointed to represent any particular interest group.
Our members are drawn from a variety of groups to give as wide a perspective as possible. We hope members will bring their own valuable perspective to discussions through a variety of experiences, contacts and networks, and reflect current public views and concerns. You might like to think about the role partly as the person who consciously considers how decisions might appear or feel to a patient.
Does CAG make decisions?
No. The CAG is an advisory committee. It provides formal independent advice to the decision-makers.
Who can I discuss this with in greater detail?
You can contact the confidentiality advice team at cag@hra.nhs.uk or 020 7104 8100 for a discussion prior to making an application to ensure the role is right for you.
We are happy to discuss and provide further information on key aspects of the role.
How do I apply?
Please request an application form.
If you’re shortlisted we will invite you to complete a short assessment and attend an interview. Interview dates can be found here.