Patients

What is the Bolton Care Record?

The Bolton Care Record is a way of bringing together the relevant parts of your health and social care records, currently held by different care organisations who are responsible for looking after you. These records are currently held separately and aren’t available across different health and care settings when they are needed.

Why do you need to share my information?

The NHS in England has been working with patients and clinicians to try and identify ways of ensuring that patients and clinicians are able to gain maximum benefit from their consultations. To enable this to happen, there is a target that the NHS should be paper free at the point of care by 2020.

To provide the best treatment, care and support to you as a patient or service user it is essential that health and social care professionals have access to the most up-to-date information. Information is already shared between health and social care organisations by phone and through paper records. The Bolton Care Record allows this sharing process to happen more efficiently, enabling better care for you.

What is meant by an Integrated Digital Care Record?

On a local level many Clinical Commissioning Groups (CCGs) have started to integrate peoples’ health and social care records to improve the overall care they provide in their area and to ensure more joined up care is provided. This is referred to as an Integrated Digital Care Record.

Who will this affect?

This will affect all residents across the country. However, each area is working out a local solution to support this, but ensuring that all areas could be joined up. This will ensure that no matter where you receive your health and social care, you can be assured that the care professional will have the most up to date information relating to your treatment.

Who is responsible for the Bolton Care Record?

Bolton CCG will retain overall responsibility for ensuring that the governance structures are established and operate effectively. Governance structures for all aspects of the Bolton Care Record, including information governance, are being established and will include representatives from all of Bolton’s key partner organisations.

Is it for all patients registered with a GP practices in the Bolton locality?

Yes, unless they have refused to share their records.

Who uses the Bolton Care Record?

The Bolton Care Record is used by health and care professionals within your local NHS and Social Care. Having access to this record allows health and care professionals to have a much wider view of information than they might otherwise have to hand, which in turn is beneficial to you when they provide your regular or emergency health care.

In situations where a clinician may not have any history of your previous treatments, for example in emergencies, access to information about allergies, diagnosis and medication can provide vital details that will help them give you the best care and advice possible.

Where does the Bolton Care Record get its information from?

The Bolton Care Record is an electronic record that brings together information from different parts of the NHS and Social Care in Bolton.

Who can amend or add information to my Bolton Care Record?

Your healthcare information will be updated locally by the hospital or your GP practice and these updates will be present in your care record the next time it is viewed.

What are the benefits of the Bolton Care Record for patients and clinicians?

By sharing your information across services your GP practice or hospital team will be able to see the most up-to-date health information about you and be able to make better and quicker decisions about your care and treatment. This will be especially helpful when care is being provided by a range of professionals, is unplanned or in an emergency.

For example, this means that if you go into hospital in an emergency, the doctor treating you will know what medication your GP has prescribed for you. It also means that when you visit your GP, they will be able to see what care you have received in hospital. It will allow all healthcare professionals directly involved in your care to work with you to make safe and fully-informed decisions about your care.

As well as providing you with better, safer and quicker treatment, it also means you do not have to give the same information to lots of different people, which can sometimes happen at the moment.

If I receive treatment or care outside the Bolton area can health and social care professionals see my Bolton Care Record?

No. The Bolton Care Record is only available to the NHS and social care organisations in Bolton that have signed up to the system.

How do I know my records are kept secure?

Your information can only be accessed over a secure healthcare network and by those that are providing you with support.

By law, people working in or on behalf of the NHS or as part of NHS healthcare teams must respect your privacy and keep all information about you safe.

Will it add to my doctor’s workload or increase costs?

The Bolton Care Record has been designed to ensure that providing information does not affect existing services at all. Sending information to the Bolton Care Record is an automated process that happens overnight, when no GP treatment is being provided, and therefore does not affect the service your GP would normally deliver.

Having data on the Bolton Care Record may improve the care you receive by providing access to additional information. Submitting data to the Bolton Care Record does not cost your practice anything.

Will the Bolton Care Record link to the national organ donor register?

No. The Bolton Care record is focused on providing health and social care professionals in Bolton access to information to improve care directly.

How will the public know that this is happening?

We are developing a communications and engagement plan to support this work. Bolton CCG will be conducting extensive engagement with the people of Bolton, staff and other stakeholders to ensure that there is widespread understanding of the Bolton Care Record.

What if my GP doesn’t sign up to do this?

If your GP hasn’t signed up to sharing your records, and you wish to have your records shared, you should contact your practice in the first instance and express your wish to have your records shared.

Who can access my information?

Your health and care records will remain confidential. They will only be viewed by people who are directly involved in your care. Your information isn’t shared with anyone who doesn’t need it to provide treatment, care and support to you.

It is important to understand that these professionals will only have access to the information that they need in order to treat you effectively. The amount of information that can be viewed varies depending on the person’s job role.

Your details will be kept safe and won’t be made public, passed on to a third party who is not directly involved in your care, used for advertising or sold.

How does consent to view the record work?

The first time that a health or social care worker tries to access your shared record a prompt will come up on the screen asking for your consent.

The health or social worker will ask you to give consent and record your choice within the system. Depending on the type and duration of consent you have given, other health and social care workers involved in your care will be able to access the record without having to ask for your consent again.

Of course this only allows access to staff that you are registered with and are actively treating you, so for example your GP can only view patients registered at their practice. If you just want to give consent for the professional seeing you that day you can opt to consent for 24 hours only. If you change your mind and no longer want your record to be viewed you can inform your GP and the record will be blocked. The next time a health or social care professional tries to access the record the system will indicate that the patient has not given consent to view the record.

What if it is an emergency and I am unable to give consent?

A function does exist to allow access to the Bolton Care Record when there is an immediate need to access the system and there is no possibility of asking consent from the patient or a relative and the patient has not previously given consent.

An example of where this might be applicable will be in the A&E, where the patient is unable to give consent (they may be unconscious). The legitimate access is secured by the fact that the patient needs immediate treatment, and the information held in the record might be of use to the team treating them for life sustaining purposes. For example, the clinician may take the decision to access the record to find out about any allergies or pre-existing conditions.

In this instance, the clinician is able to “break the glass” and access the record, however, this will immediately send a notification to the Caldicott Guardian (the person responsible for data) of the employing organisation. This emergency access is completely auditable, and would only be used in exceptional circumstances. Patient consent to access the shared record would always be the first approach.

How do I know who has accessed my record?

All activity in the Bolton Care Record is recorded so that we know who, when and what was accessed or changed.

The system provides a full audit trail of who has accessed the system. Health and care professionals will also have to confirm whether they have accessed the information with your permission. Audit reports from each participating organisation will be reviewed regularly to see who has looked at their patients’ records, and which records their staff are reviewing to ensure that all access is for legitimate reasons.

Staff can only access records for patients that are registered on their own clinical or social care system. They have no ability to search for any patients across the whole of Bolton.

Inappropriate access of patient data will be taken extremely seriously as it constitutes a breach of the Data Protection Act 1988 and / or the Computer Misuse Act 1990. It will be reported as a serious incident and investigated appropriately. Disciplinary procedures should be enacted.

What do I do if I think staff may have been accessing my record when they should not have done?

If you have evidence that staff have been accessing your record inappropriately or without consent, please contact bolccg.sharingiscaring@nhs.net giving as much information as possible.

How can I check the accuracy of my record or see what is held about me? Will I be able to access the information being held about me?

Under the Data Protection Act 1998 you can request access to any information that an organisation holds about you, including electronic and paper records. If you wish to do this, please contact the relevant organisation for example: your registered GP practice or the hospital which the request relates to. You may also be able to access your own records electronically

What if I want some things changed?

If you find that any of the information held about you contains inaccuracies, please contact the relevant organisation as soon as possible, and ask for this to be corrected.

Is my data used in any other way?

The data that is held in the shared record is primarily for the purposes of direct health and care purposes. There is no intention that any of this data will be handed over to any third party or commercial organisations.

Where can I get more information?

www.BoltonCareRecord.org

What is the Summary Care Record and how is it different from the Bolton Care Record?

The Summary Care Record (SCR) is a national initiative that takes a limited amount of data from GP clinical systems and makes it available to other NHS clinicians. Access to the SCR is regulated via the use of an NHS Smartcard. The data that is contained in the SCR is only from GP systems; it does not contain a patient’s full health and social care record from other health and social care organisations.

What is care.data and how is it different from the Bolton Care Record?

Care.data was a government initiative that looked to join up anonymised data to use for planning purposes and evaluation of care pathways. This programme of work is no longer live.

What can I do if I do not want my record shared?

You can choose not to have a Bolton Care Record. It is your choice but sharing your medical and social care information through a Bolton Care Record will make it easier to provide the best quality care and support for you. If you have any doubts about your records being shared you can talk to your GP in the first instance.

How do I opt out?

At any point, you can say ‘no’ to any health or care professional who asks for permission to view your information.

You are also able to completely opt out of having a Bolton Care Record. You should contact your GP in the first instance if you wish to opt out.

Will I be treated differently if I refuse to share my information?

Healthcare staff treating you may not be aware of your current medications in order to treat you safely and effectively. They may not be made aware of current conditions and/or diagnoses leading to a delay or missed opportunity for correct treatment.

Healthcare staff may not be aware of any allergies/adverse reactions to medications and may prescribe or administer a drug/treatment with adverse consequences.

However, the NHS will do its best to provide you with safe, efficient care, whether you have opted in or opted out of the Bolton Care Record. Please be assured that the NHS and Department of Health is committed to honouring your decision and doing all they can to ensure that you get the best healthcare possible.

Can children’s records be opted out?

A parent or guardian can request to opt out children under 16 but ultimately it is the GP’s decision whether to create the records or not, because of their duty of care to the child. If you are the parent or guardian of a child under 16 and feel that they are able to understand, then you should make this information available to them. In addition, someone who is legally responsible for another adult can opt out on their behalf.

What if I change my mind about sharing my records?

You can choose to opt out of or opt back into the Bolton Care Record at any time by contacting your GP in the first instance.

How do I know who has accessed my record?

The system provides a full audit trail of who has accessed the system. Each participating organisation will review their audit reports regularly to see who has looked at their patients’ records, and which records their staff are reviewing to ensure that all access is for legitimate reasons.

You can ask any of the organisations who are providing your care to find out who has accessed your Bolton Care Record and they can request an audit report to show all staff who have accessed your record, when and where. This may take a couple of days and could be sent to you or picked up at your next visit.

Staff can only access records for patients that are registered on their own clinical or social care system. They have no ability to search for any patients across the whole of Bolton.

Inappropriate access of patient data will be taken extremely seriously as it constitutes a breach of the General Data Protection Regulation and Data Protection Act 2018 and/or the Computer Misuse Act 1990. It will be reported as a serious incident and investigated appropriately. Disciplinary procedures should be enacted.

How is my data protected?

Your data is held by the NHS Greater Manchester Shared Services in a secure environment which can only be accessed via the NHS secure network. The security of this is tested every year by expert, independent specialists who attempt to access the system, so that they can verify that the system is as secure as possible.

Staff access is limited to the patients that are registered with them via their login controls so that they cannot search for patients they are not treating.

Only qualified staff that are registered within their profession, such as doctors, nurses and social workers are allowed access to your whole record. Some administrative staff involved in your care will be able to see basic demographic details. This ensures that all staff are trained in data protection and patient confidentiality and are subject to disciplinary procedures if they break the code of conduct.

What do I do if I would like to make a complaint about the improper use of my record?

Please contact the care provider directly to register a complaint about alleged improper use by their staff.