Aims of sample
The sampling approach for the Cancer Patient Experience Survey was designed to:
- Provide national level results, NHS Board level results, Regional Cancer Network results and results for the five cancer centres in Scotland.
- Provide feedback relating to recent experiences
- Include people who had experienced the range of cancer care services
- Minimise the chances of sending the survey to individuals that did not have cancer or who had died since leaving hospital.
The sampling for the survey was carried out by ISD.
Direct sampling from the Scottish Cancer Registry ( SMR6) is not permitted for a postal survey of this sort. Therefore, the primary sampling frame was a national dataset containing records of acute hospital activity ( SMR01). This was used to identify adults (aged 16 years and over) with an inpatient or day case record with any mention of cancer during the period between 1st January 2014 and 30th September 2014.
In order to confirm the diagnosis of cancer and to minimise the risk of sending surveys to patients who did not have cancer, validation was completed using the Scottish Cancer Registry. The sample identified from the hospital records was checked to identify patients who had a Cancer Registry diagnosis date between 1st July 2013 and 31st March 2014 and who were alive at 31st July 2015. Patients sampled from SMR01 but not present in SMR6 were excluded from the sample.
Criteria for exclusion from the sample.
The following patients were excluded from the sample:
- Patients aged 15 or less (on discharge from hospital).
- Patients who are known to be deceased.
- Privately funded patients receiving care in NHS or private hospitals.
- Patients treated in a private hospital/hospice.
- Scottish NHS patients treated in hospitals outside of Scotland but whose care was commissioned by an NHS Board.
- Patients who were not resident in Scotland.
- Patients who stayed in hospital for termination of pregnancy and/or other conditions relating to pregnancy and childbirth.
- Patients who stayed in a hospital maternity unit.
- Patients who were resident in a long-stay hospital.
- Patients who were being treated for a mental health condition in a mental illness hospital.
- Patients who were being treated in a learning disabilities unit.
- Patients with an ICD10 code of C44 and all other C44 classifications (C44.0 to C44.9).
- Patients with an ICD10 code of C84 and all other C84 classifications (C84.0 to C84.9).
- Patients who do not have a confirmed diagnosis of cancer according to SMR06.
Once the list of eligible patients was compiled, ISD eliminated duplications and incomplete records to determine the final sample frame.
To ensure a sufficiently large response to the survey, a census approach was taken. This means that surveys were sent to all qualifying patients, rather than just a restricted sample of them.
- ISD and the survey contractor ensured that all data was transferred securely via secure File Transfer Protocol ( sFTP) with secure login. Once files were received they were immediately deleted from this system. The data transferred to the contractor included patient name and address and a unique identifier, generated for the specific purposes of this survey.
- The fields included in the data transfer were limited to those required to mail the survey pack to the individual patient and to identify which hospital they should complete the survey in relation to.
- On completion of the survey fieldwork and data capture the contractors sent the complete anonymised data files electronically to ISD through secure FTP. This enabled ISD to undertake analysis for the reporting.
Access to sampling frame and patient address information
To gain permission to use patient information for the survey (including sharing it with contractors for the purposes of administrating the survey) approval was required from two oversight groups. This process of gaining approval was led by ISD.
The two groups were:
- NHS NSS's Privacy Advisory Committee - a committee which provided independent advice to NHS NSS and The Registrar General on the protection of privacy of patient information
- the Community Health Index ( CHI) Advisory Group - a professional and lay group that advised on appropriate uses of the CHI number, which is a unique identifier held by every person in Scotland and which is applied to their health care records.
The Public Benefits and Privacy Panel has now taken over the functions of these groups. You can find more information on the Public Benefits and Privacy Panel and the principles guiding the use of patient data at the link below: