CHIE | Health Planning & Research
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Health Planning & Research

What is my information used for?

Your information helps us to improve treatment for you, your family and for other patients.

 

Data processed in CHIE can be used by the NHS and social care to plan which services to run in which locations. This information is really important in helping service planners to understand what new services might be needed to help care for you and your family. In addition, the data is used for a variety of research programmes. This is called ‘Secondary Processing’.

 

Your data is never processed for the benefit of commercial companies like drug manufacturers.

 

Importantly, the people who have access to this data to carry out research and planning cannot find out your name, address or date of birth from the information they are looking at and therefore cannot identify you.

CHIA

Care and Health Information Analytics

Care and Health Information Analytics (CHIA) is a database which contains information that can be used by data analysts and researchers for looking at trends and patterns in health issues in the general population. The process can help to identify better ways of providing care to you and your family.

 

Data in CHIA is used to plan how health and care services will be delivered in future, based on what types of diseases are being recorded and how many are being referred to hospital etc.   Data is also used to help research into new treatments for diseases. Examples of how this has helped patients with diabetes, acute kidney injury etc. can be found here. (link to page: Publications)

 

The information that CHIE sends to CHIA goes through a process called ‘pseudonymisation’. This means that any data items that could be used to identify you (e.g. name, date of birth, address) are removed. It is not possible for anyone using the data in CHIA to identify you.

 

The information in CHIA is kept as a physically separate database from CHIE. Only a small number of SCW staff have access to CHIA and these people do not have access to CHIE. This data does not include information typed in by hand, so there is no possibility of it containing references to family members or other people. It contains only coded entries for things like allergies and prescribed drugs.

 

Although the data in CHIA cannot and will not be used to identify you and will always be replaced by pseudonymised data, it could still be considered as personal data in certain circumstances. Under GDPR, CHIA still needs a legal basis to operate. The legal basis used by CHIA for processing ‘pseudonymised’ data for analysis is that Clinical Commissioning Groups and Local Authorities have a duty in law to provide good health and social care. In order to do that they need access to data about the populations they serve. The special category condition under which CHIA processes data is that these bodies serve the public interest in the area of public health, ensuring high standards of quality and safety of healthcare.

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Research

One of the things that we are proudest of, and indeed, sets CHIE apart from some other services of its kind, is the way that the data you share helps to shape and improve future treatments and services for all patients.

 

Access to the pseudonymised data held in CHIA is restricted to analysts who have signed an approved confidentiality agreement, which they are required to re-sign every year and every request for data for research analysis purposed has to be approved.

 

The types of analysis requested from the data held in CHIA ranges from information about the number of certain procedures carried out in GP practices (e.g. the number of leg ulcer dressings done by nursing staff) to studies based on particular diagnoses (e.g. dementia) or the prescription of certain medications (e.g. antibiotics).  These research studies are used to help identify the need for future services in particular areas and to support our local health and care providers to achieve national targets.

 

Our research partners at the University of Southampton and National Institute for Health Research (NIHR) CLAHRC Wessex have used the data held in CHIA to support more extensive research studies. Examples of this include the earlier identification of liver disease; epidemiology of Chronic Kidney Disease including its prevalence and prognosis in older people; and observational cohort study of patients with COPD .

 

Click here for more details of publications using this data.

Can I Opt Out?

You have the right to choose NOT to share your information with CHIA. This is called ‘Opting Out’.

 

If you want health and social care staff to still be able to see information on CHIE for your care, but for this information not to be transferred to CHIA, please contact your GP practice and ask to be ‘opted out of CHIA’.

 

Your practice will then apply specific codes to your record held on their GP system. These codes will indicate that you ‘Dissent from secondary use of GP patient identifiable data’ and will stop your record from being shared with CHIA.

 

When this code is added, information is kept on CHIE to be used for your care, but is not sent to CHIA.

 

Your practice will inform the CHIE Systems Team that you have decided to opt out of sharing your information to CHIA and the team will check the system thoroughly to ensure that your record has been removed.

 

You can change your mind at any time about opting-in or out of sharing your information with CHIA.

 

Please follow the guidance HERE to find out more about opting-out and opting back in to sharing information with CHIA.

All Clinical users of CHIE should at all time follow the rules laid down in the Acceptable Usage Agreement.  All users are expected to abide by the following:

I will ensure that where practical, as a care professional, I will ask the patient before accessing CHIE for patient care. If the patient is unconscious or not present but would benefit from my care, I may use my judgement about accessing the information.

I accept that CHIE may have information missing and will make my clinical decisions accordingly.

I agree to keep my user name and password secure. I will make sure that no one else can access CHIE in my name.

I am aware that an audit trail will detail my name and date of all records that I have accessed/viewed and that a patient can request a copy of the audit trail of all staff who have accessed their record.

I accept that disciplinary action may be taken against me if I do not abide by the security & confidentiality policy.

I accept that my personal details will be recorded to enable the audit trail to work.

Your Rights

As a the ‘subject’ of the data held in your record on CHIE, the General Data Protection Regulations(GDPR) gives you certain rights which protect your privacy and confidentiality.:

  1. 1. The right to be informed

The right to be informed encompasses our obligation to provide ‘fair processing information’, typically through a privacy notice. It emphasises the need for transparency over how we use your data. We provide this information via patient leaflets, posters and advertisments in GP practices and local publications.

  1. The right of access

You have the right to obtain confirmation that your data is being processed, access to your personal data and other supplementary information.

  1. The right to rectification

You are entitled to have personal data rectified if it is inaccurate or incomplete and to be informed about any rectification of data supplied to third parties

  1. The right to erasure

The right to erasure is also known as ‘the right to be forgotten’. The broad principle underpinning this right is to enable an individual to request the deletion or removal of personal data where there is no compelling reason for its continued processing.

  1. 5. The right to restrict processing

Individuals have a right to ‘block’ or suppress processing of personal data. When processing is restricted, we are permitted to store the personal data, but not further process it. We can retain just enough information about the individual to ensure that the restriction is respected in future. Visit the ICO website to see the circumstances which require us to restrict the processing of data.

  1. The right to data portability

Allows individuals to obtain and reuse their personal data for their own purposes across different services and to move, copy or transfer personal data easily from one IT environment to another in a safe and secure way, without hindrance to usability

  1. 7. The right to object to:

- processing based on legitimate interests or the performance of a task in the public interest/exercise of official authority (including profiling);

- direct marketing (including profiling); and

- processing for purposes of scientific/historical research and statistics.

  1. Rights relating to automated decision making and profiling

The GDPR provides safeguards for individuals against the risk that a potentially damaging decision is taken without human intervention.