Controlled access to your information: Your rights
Rights under the Data Protection Act and Common Law
Under the Data Protection Act 1998 and Common Law you have some ability to control the movement and distribution of your personal information. The Data Protection Act and Common Law interrelates with the Foundation Trust's legal, statutory, business and professional requirements such that you can state your preference over who or what organisation has access to your information. The Foundation Trust must honour your preferences, so long as they fit within the legal and business requirements of the Foundation Trust and the professional obligations of its staff. The Foundation Trust will not be able to honour your request if it cannot find a safe method of doing so within its existing business processes.
The following types of control may be available to you:
Controlled Access & Sealing of Information
You may request from the Foundation Trust that your care information not be shared between Foundation Trust services and teams or be provided to external organisations such as GPs or hospitals. You may further request that information is "sealed" such that information is generally unavailable unless a prior set of conditions is met or it is an emergency. Although you have this right, the Foundation Trust will need to consider the risk of not providing the information and consider your capacity to make the decision if it would be a significant risk to your health or interests. The Foundation Trust will also need to consider whether it can provide you with safe treatment and your request can work with its existing models of care delivery. Where the Foundation Trust cannot provide you care because it does not have the appropriate information or if by not providing the information to someone else it would be seriously unsafe, the Foundation Trust has the right to decline your request and ultimately may have to refuse to provide services to you. If you wish to control access to your information or seal information please speak to your care providers or the Foundation Trust's Data Protection Officer.
Note that in most circumstances your care information will be available to everyone within a care team or clinical unit. You will not have the ability to request that certain members of a care team / clinical unit do not have access to your information.
Standing Consent for Non-Health or Social Care 3rd Parties
You have some control over who can access your information and under what conditions. You may specify third parties have or do not have access to your information in the event that you are not able to give consent. Where the third parties in question do not otherwise have the ability to change this, the Foundation Trust will ensure that whatever reasonable conditions you place on their access will be followed. For instance you may wish for your partner, parents or children to have access to your information in the event that you suffer a stroke and have difficulties in communicating your wishes.
Please note that the Foundation Trust will have to consider your best interests when following your standing consent. When you are unable to provide consent the Foundation Trust has the responsibility to protect you and your information and should it feel that your best interests would not be served by disclosing information it will not do so. Your wishes however will help inform the Care Trust where it is unclear what your directions would have otherwise been. The Foundation Trust encourages you to provide it with standing consent for your information. In particular the Foundation Trust would like to encourage you on the following:
· Access and conditions for your partner, parents and/or children in the event that you are unwell and unable to provide consent
· Events that could trigger a standing order (e.g.: illness relapses, comas, death, deterioration in health, etc...)
If you wish to provide standing consent, please contact your Care Workers and/or the Foundation Trust's Data Protection Officer.
Providing Aliases
The Foundation Trust can continue to operate with information provided under an alias. However this alias can only apply to the name given for the information and not other identifying information. For instance, if you wish to supply a name that is not your own, you must still supply the correct mailing address and the correct NHS number. If you wish to supply an alias you must contact both your Care Team and the Foundation Trust's Data Protection Officer.
Please do not supply an alias to the Foundation Trust without first discussing this with your Care Team. For your safety the Foundation Trust must know your real name and date of birth when it begins providing you services.
Permanent Preservation
The Foundation Trust strongly supports the creation of historical medical archives and encourages the public to consider the preservation of their information for the knowledge and research of future generations. Generally when considering records for permanent preservation it will be the entire record that would be made available to the public. That being said the Foundation Trust selects only a few individuals records for permanent retention and the vast majority of personal information is destroyed. If you have any preference for the retention or destruction of your personal information after the obligatory retention period has expired the Foundation Trust encourages you to communicate your preference.
Please note that your personal information would not be available to the public until a reasonable time period (possibly 50-100 years depending on the receiving archive) after you have passed away or could be reasonably expected to have passed away. The Foundation Trust assumes that the average lifespan is approximately 80-100 yrs. Please note that the Foundation Trust is statutorily obliged to keep some information depending on the type of information and the situations in which it was recorded regardless of the wishes of the subject of the information. If you wish to provide a preference for your personal information, please contact the Foundation Trust's Information Request Office at:
Information Request Office
1st Floor, North Wing,
St Pancras Hospital
Phone: 020 3317 3115
Fax: 020 3317 2730
Email: information.request@candi.nhs.uk
Research Usage
The Data Protection Act 1998 gives individuals the right to deny access to their personal information for research purposes. This does not provide individuals the right to deny the Foundation Trust the ability to use its information for monitoring performance or developing better methods of business or care, but it does provide some ability to block and third party research from using their personal information.
In summary, under the Data Protection Act 1998 the Foundation Trust is not obligated to provide notification or seek consent from individuals that their information is being used for specific research projects. This is only in the case where the research:
· Does not identify any person whose personal information was used as part of the research in the products of the research.
· Is not done to directly assist in any decision concerning the people the information is about.
· Does not substantially distress or cause damage, or would not likely cause substantial distress or damage, to the people whose personal information was used.
Although the Foundation Trust fully supports the use of its information for research purposes, it does respect people rights to refuse to allow their personal information to be used for research purposes. Whenever possible the Foundation Trust will provide anonymised data to researchers, however in the instances where pseudo-anonymised or person identifiable information is required the Foundation Trust will attempt to withhold the information if it is so instructed.
If you wish to have your information kept from research purposes, please contact the Foundation Trust's Data Protection Office.
Advanced Directives
You may use Advanced Directives to provide or deny access to your care records to individuals or organisations. There is no difference providing an Advanced Directive for aspects of your care and providing one for aspects of the use and sharing of your information. Providing Advanced Directives regarding your information must be agreed with the Foundation Trust in the same way as you would arrange regular directives about your information (i.e.: It must be safe and practical for the Foundation Trust).