The IBD Registry is closing current activities by Easter 2024, and is in discussions through Spring 2024 about possible transition to an NHS organisation. See our Closure Announcement, Data Transfer Update, Closure FAQs and Achievements. 

Privacy Notice for COVID-19 (COPI)

How your data may be handled during the COVID-19 pandemic

During a public health emergency such as the current COVID-19 pandemic, your data can be handled according to special temporary Government regulations.  These regulations are called a COPI Notice.

COPI Notice

On 20 March 2020 the Secretary of State for Health and Social Care issued a ‘Notice’ under Regulation 3(4) of the Health Service Control of Patient Information Regulations 2002 (COPI). This ‘COPI Notice’ requires organisations to process confidential patient information to support the Secretary of State’s response to COVID-19.

COVID-19 Purpose

A COVID-19 Purpose includes but is not limited to:

  • understanding COVID-19 and risks to public health, trends in COVID-19 and such risks, and controlling and preventing the spread of COVID-19 and such risks;
  • identifying and understanding information about patients or potential patients with or at risk of COVID-19, information about incidents of patient exposure to COVID-19 and the management of patients with or at risk of COVID-19 including: locating, contacting, screening, flagging and monitoring such patients and collecting information about and providing services in relation to testing, diagnosis, self-isolation, fitness to work, treatment, medical and social interventions and recovery from COVID-19;
  • understanding information about patient access to health services and adult social care services and the need for wider care of patients and vulnerable groups as a direct or indirect result of COVID-19, and the availability and capacity of those services or that care;
  • monitoring and managing the response to COVID-19 by health and social care bodies and the Government including providing information to the public about COVID-19 and its effectiveness and information about capacity, medicines, equipment, supplies, services and the workforce within the health services and adult social care services;
  • delivering services to patients, clinicians, the health services and adult social care services, workforce and the public about and in connection with COVID-19, including the provision of information, fit notes and the provision of health care and adult social care services; and,
  • research and planning in relation to COVID-19.

This allows us to process and share confidential information about you for a COVID-19 Purpose. All use of information will be limited to that which is necessary for the particular purpose and as far as is reasonably practical individual identifiers will be removed to the extent that they are not required for the purpose.

Any data processed under the ‘COPI Notice’ will be securely destroyed by the IBD Registry and any recipients who have received this data on the basis of the ‘COPI Notice’, upon its expiry unless they can identify an alternative legal basis to support their continued retention or processing of the data. For example, your specialist care team may include the confidential data you supply in the clinical records they hold about you for the purposes of continuing to provide you with direct care.

For information about how your specialist care team process your personal confidential data, you should refer to their Privacy Notice.

You can download this Privacy Notice here