UK Rehabilitation Outcomes Collaborative - Patient Information

Frequently Asked Questions

What is the UK Rehabilitation Outcomes Collaborative (UKROC) database?

The UKROC database is a national clinical database which routinely collects key information about every patient admitted to a specialist rehabilitation unit in England.

What information does UKROC collect?

It collects basic information about each patient including
  • Your NHS number
  • Your gender, age, ethnicity, date of birth 
  • The area in which you live (just the first part of your postcode) 
  • Who referred you to the service and how long you waited to be admitted 
  • Some information about your health condition – the main diagnosis, when it started etc 
  • The effects of the condition – i.e. for example paralysis, pain and the limitations that these cause in daily activities. 
  • The amount of care you need from the nursing, therapy and medical staff 
  • Changes made during the programme, for example in your ability to move around, look after yourself, communicate with others etc 
  • Broadly where you go on leaving this unit (eg to another hospital, home, residential care etc) but not the actual address.
But UKROC does not collect
  • Any personal details (such as your name, address, telephone or email address)
  • Any details about members of your family 
  • Any details about your social situation, finances or personal life style choices 

Where is the information held and is it secure?

The UKROC database is held on a secure NHS computer server within Northwick Park Hospital, alongside the other patient health records within the hospital.
Like all NHS hospitals, Northwick Park has very strict policies on data security, which include encryption and regular backup. The IT department where the computers are housed has 24 hour security monitoring

How is the data transferred to Northwick Park?

The dataset is extracted each month and transmitted via the NHS secure email system

Who will see my data?

Apart from your treating team the only people who will see your NHS number are the staff within the UKROC office, all of whom are fully trained in information governance and bound by a duty of confidentiality.

What is an NHS number?

Everyone registered with the NHS in England and Wales has their own unique number.

The NHS number provides a reliable way of identifying an individual patient within the NHS without actually sharing any sensitive details such as their name, address etc.

Why is an NHS number important?

You NHS number enables the NHS to identify the records belonging to each patient and ensure that they are kept separate from anyone else’s records. It also potentially allows your records to be linked together – for example when you visit your GP or attend a hospital appointment.

How will my NHS number be used?

Your NHS number will be used potentially to link to episodes of treatment that are held in other datasets. So for example, if you were transferred to the rehabilitation unit from an acute hospital, the NHS number could be used to link you record for the hospital care and rehabilitation.

What happens if you do not collect my NHS number?

If we do not collect your NHS number this increases the chance that your care could be fragmented, as the NHS has no way of linking up information about your rehabilitation with any other aspects of your NHS care.

What are the advantages of collecting my NHS number?

Collecting our NHS number will provide the possibility of tracking your care.
For example, after you leave the rehabilitation unit your NHS number may be used to track your progress through other services and to check whether you actually received any further treatment or rehabilitation that you were referred for.
In addition to the potential advantages for you personally, there are advantages to other patients and the NHS as a whole. By pooling and analysing the data over a substantial period of time we can address important questions to better understand our patients’ needs and how rehabilitation can best help them. These questions may include:
  • What are the long-term effects of disabling illness or injury?
  • How can we best improve the outcome of rehabilitation for patients and their families? 
  • What types of rehabilitation work best for which individuals? 
  • How should we best provide the rehabilitation programme? 

Where can I find further information?

You have any further questions you can contact the UK Rehabilitation Outcomes Collaborative UKROC team using the following email address (LNWH-tr.ukroc@nhs.net)
Alternatively you may write to the UKROC team at the following address:
UK Rehabilitation Outcomes Collaborative
Regional Hyperacute Rehabilitation Unit
Northwick Park Hospital
Watfrod Road
Harrow
Middlesex
HA1 3UJ