How we use your information

At Woodlands Hospice Charitable Trust we keep information about you so that we can provide you with safe, effective care.

During your treatment it is necessary to share your information with the health care professionals who are providing your treatment and care, and possibly with health care professionals from other organisations that are working with the Hospice.

The information we keep falls into two categories – demographic information and clinical information.

What is in my demographic information?

Your name (including the name you prefer to use) and any other name you may have used in the past.
Your main or temporary address (and where to send post if this is different).
Your contact details (telephone, email, fax).
Name and contact details of people involved in your care.
Carer’s name and contact details.
The language you prefer to use and if you need an interpreter.
Your date of birth, gender, ethnic origin, religion or belief, and age.
Your NHS number.
Your next of kin.
Your GP practice.

We take the security and confidentiality of information very seriously and every effort is put into ensuring that any use of your information is as secure as it can be.

What clinical information is in my care record?

Care provided by the Hospice and any diagnoses.
Your medicines and any bad reaction you have had to medicines you have taken that you have told us about.
Any allergies you have told us about.
Health conditions.
Details of your care plans and assessments.
Dates and times of appointments and contacts you have had with your consultant and any other health care professional.
Dates and times of hospital stays.
Reminders for health care professionals about future plans for your care.
Your care records may also include other details you have told the clinician (for example, about your family or work) but only if this is relevant to your care.
Mental Capacity Act information, if any.

How do you use my health information?

The people caring for you use your information to provide treatment, check the quality of your care, to help you to make good decisions about your health, and to investigate complaints. If you agree we can keep your relatives, carer and friends up to date with the progress of your treatment.

We also sometimes use your information more generally (usually anonymised) to:

Check the quality of care we provide to everyone, e.g. clinical audit, National Patient Survey.
Protect the health of the general public.
Plan and manage the health service we provide.
Carry out research.
Train health care professionals.

If we use your information for these reasons, we normally remove your name and other identifiable details (i.e. anonymise). If we need the information in a form that identifies you, we would ask for your consent first.

When might you use information that identifies me without asking permission?

In very limited circumstances, the law allows us to use your information without asking for your permission in order to improve public health.

We may also need to (by law) give out information about you without asking for your permission. In all cases we will only provide the information needed. Wherever possible we will tell you.

For example we may need to:

Report food-poisoning cases to authorities.
Report some infectious diseases.
Inform an independent Mental Capacity Advocate in order to provide help to an eligible patient where the patient is unable to give consent due to lack of capacity.
Provide information to be used in court.
Give information to the police to help detect or prevent a serious crime.

What if I do not want my information to be shared?

Inform the health care professional or consultant you are seeing and make it clear that you do not want your information to be shared. We will not disclose your information to third parties without your permission unless there are exceptional circumstances such as when the health and safety of others is at risk or if the law requires it.

Your consultant or health care professional will discuss with you the implications and any risk of not sharing your information and how this may affect your care. For example, this could mean that you would not have any of the benefits of having essential information about your care available out-of-hours, or in an emergency.

Access to medical records

The Data Protection Act 2018 safeguards the processing of your information. You are allowed by law to see what is contained in your medical records under this Act. Requests for access to your personal information should be in writing to your GP, or the Chief Executive of the Hospice. The Hospice must respond to your request within one month and a charge may be made for this. The Hospice has a duty to keep medical records up to date and accurate. If you feel anything has been added to the record that is factually incorrect, you have the right to apply to have it amended in accordance with the guidance in the Act. You may also request (free of charge) that copies of correspondence related to your care are sent or shown to you.

Electronic Health Records

Historically records have been on paper, but real progress has been and continues to be made on electronic health records.

The benefits of electronic records are:

Available to staff who need them to care for you. Paper records can be physically lost and can only be in one place at a time.
Improvements in completeness and accuracy, with more consistent recording of information.
Can be shared between staff who are working together to provide your care.
Aid provision of safe care by reducing possible errors.

There have been media headlines about concerns with regard to the security of electronic records, but many concerns are misplaced and you may be assured that a great deal of effort is put into ensuring their security.