Home > Our care > Patients > Information Leaflets > Your information and how we use and keep it
Our care Get involved
Healthcare professionals

Find out about the service we provide, who, and how we can help.

Find out more
Get involved

There’s so many ways you can get involved and support St Barnabas House.

Information Leaflets

Your information and how we use and keep it

Data Protection relates to the information you provide. This page explains how we might use your personal data and who it may be shared with. Data you provide is processed in accordance with the Data Protection Act 2018.


Please note: You can also download a copy of this information leaflet at the bottom of this page or view our full list of information leaflets.


When you are referred to the hospice, we will collect personal information from and about you, your family and from other services.  We need this information so that we can provide you with the highest quality care and treatment.  This information includes:

  • Details about you, such as address, date of birth, religion, ethnicity
  • Your medical history, details of treatments, investigations, care and advice we have given you.
  • Relevant information from and about people who care for you and know you well such as relatives, carers and health professionals.


How we use your information

St Barnabas Hospice staff who are directly involved in your care, such as doctors, nurses, counsellors, physiotherapists, social workers and the palliative nursing team at Worthing Hospital will share your personal information with each other. This is to ensure that these professionals have accurate and up to date information to assess your condition and give you the best possible safe and effective treatment.


Sharing your information outside of St Barnabas

It may be necessary to share your personal information with other professionals outside of the hospice who are also involved in your care or if you need treatment somewhere else.  This may include your consultant, GP, community nurses and any other relevant professionals. This helps to provide seamless care for you amongst partner organizations caring for you.  Your information will only be made available if there is a genuine need to do so.  Some of this information sharing may be from the use of central electronic clinical record systems.  Please see the information leaflet ‘Your Electronic Health Record’ for more information regarding the consent for and sharing of your electronic patient record.

We will not share information about you with your family or friends without your consent.

Sometimes we have to pass on information about you by law.  For example, where a formal court order has been issued; in response to a formal written request by you or your legal guardian; finding an infectious disease that may endanger the safety of others.


How you record may be used to help the hospice

 Your records allow us to review the care we provide to make sure it is of the highest possible standard and meets all your healthcare needs.  We may use information about you, the care that you have received, to evaluate and improve the care that we provide to all patients.  This may include checking the quality of care (clinical audit) or helping to investigate any concerns or complaints you or your family have about your care from the hospice.

Some information we hold may be used to provide statistical information. When we use your records in this way we remove or disguise identifiable personal information about you.


Information about families and carers

We may gather relevant family and carer information either from patients, professionals who refer directly to us or from families and carers themselves.  We may use this information to contact families in emergencies.  We may also use this information to offer services from our Family Services Team and to send out service satisfaction surveys.  The hospice manages personal information for families and carers along exactly the same principles as the patients.


How we keep your records safe and confidential

Everyone working for the hospice or who receives information from us, has a legal duty to keep information about you confidential.  This is monitored by the Caldicott Guardian, the Clinical Director who is responsible for ensuring the patients’ rights to confidentiality are respected.

Our Information Governance Group ensure our information security and compliance with the Data Protection Act 2018 and the General Data Protection Regulation 2018

We keep most records for eight years, unless the law requires them to be kept longer. If we are told about a formal enquiry or legal action, we will keep the records until they are no longer required.


Your information rights

You have the right to know how we will use your information.  That is what this page aims to let you know.

  • You have the right to access your medical records ‘the right of access to personal data’.  If you want to do this please talk to one of the hospice team responsible for your care
  • You have the right to object to us making use of your information
  • You have the right to ask us to change or restrict way in which we use your information.  We are obliged to agree if it is possible to do so.  We will however, inform you of the potential risks to your care if you restrict the sharing of information with others providing care for you.
  • You have the right to include any correction you want to make in the record.


Who do I contact if I would like to know more of have concerns?

If you would like to know more about how we use your information, or if you have concerns about it, or if you require this text in a different format or language please speak to one of your hospice team.

Alternatively, you can contact the Caldicott Guardian or Data Compliance Officer by writing to them at the Hospice.

Download Leaflet