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Privacy Notice: Is rate of investigation with chest x-ray associated with lung cancer stage distribution and mortality?

Study Overview

The study will work out whether patients who are diagnosed with lung cancer who are cared for at General Practices which request higher numbers of chest x-rays (the ‘chest x-ray rate’ of the practice) are diagnosed with cancer in earlier stages and whether they live longer compared to patients at practices which request fewer chest x-rays.

We will then compare the stage at diagnosis and how long they lived after diagnosis for all patients diagnosed with lung cancer based on the chest x-ray group of each patient’s practice. We will perform statistical analysis which will take into account the differences between the individuals (such as age and sex) and we will work out whether patients who attended general practices which had higher chest x-ray rates were diagnosed at earlier stages and if they lived longer than patients who attended practices with lower chest x-ray rates.

The data will be provided by National Cancer Registry and Analysis Service following an Office for Data Release request.

Lawful basis & access to data

The lawful basis for obtaining the data is public task. Dr Stephen Bradley will have access to the data. The data will be accessed for approximately 7 months in order to undertake the project and thereafter the data will be retained until 21st April 2025 at which time the data will be destroyed.

Data to be obtained

Data will be obtained on patients who were diagnosed in England between 2014 and 2018 (inclusive).

No directly identifiable data will be obtained.

The following special category personal data will be obtained:

  • Ethnicity (8 categories)
  • Year diagnosed with lung cancer (2014-18)
  • Month diagnosed with lung cancer
  • Basis on which diagnosis of lung cancer made (e.g. clinical diagnosis, histology or death certificate)
  • Tumour histology, morphology and behaviour (e.g. in situ, malignant, micro invasive or metastatic)
  • Tumour size (mm) and number of tumours
  • Lung cancer stage (stage I, II, III, IV, insufficient information, not stageable, or not staged)
  • Vital status (i.e. whether alive or deceased at time data obtained)
  • Survival (number of days between date of diagnosis and death, where relevant)
  • Number of days between when first seen in hospital and when diagnosed with lung cancer
  • Route to diagnosis (screening, urgent suspected cancer referral, other outpatient, inpatient elective, death certificate only, emergency presentation, unknown)
  • The chest x-ray rate adjusted fifth category of the GP practice where registered (adjustment for population of practice such as proportion of patients aged over 65 and proportion of patients who smoke) for each year 2013-2017 and 2013-17 combined
  • Unadjusted chest x-ray category of the general practice (<30 per 1000 patients, 30-40 per 1000 patients and ≥40 per 1000 patients) for each year 2013-17 and 2013-17
  • Charlson co-morbidity score category (3 categories or missing)
  • Number of chest x-rays, if any, obtained 2013-17 and number of chest x-rays obtained prior to 2013, organisation which requested those chest x-rays and number of days between each of those chest x-rays and date of diagnosis

Non special category data:

  • Age in years when diagnosed with lung cancer
  • Measure of deprivation for area where resided for 2010 and 2015 (categories 1-5 or missing)

When designing a privacy notice there are things you need to include:

  • the lawful basis for processing the data,
  • who will have access to the data and
  • how long it will be retained.

Application of data protection principles

  • The lawful basis for the analysis of the data is public task, which is consistent with the collection of the data on the cancer registry. We wish to use the data to address a question which has important implications for healthcare and which could lead to improvements in health policy and possibly support improved cancer detection.
  • We have satisfied the requirements of the cancer registry and of a NHS Research Ethics Committee and the data will be used fairly and transparently. A protocol has been prepared which has prepared prior to undertaking the research and the types of data which will be obtained have been declared in this privacy notice. We intend to publish our findings in peer reviewed literature.
  • We have made particular efforts to obtain only the data which we require. Therefore no directly identifiable patient data is included, for example we will not have access to names or addresses of patients. We have also arranged with the cancer registry that we will not be informed of which general practice a patient was registered at. Instead we have created categories of chest x-ray rate for each practice. This has involved additional work and higher cost in accessing the data from the cancer registry but we felt it was justified in order to make it even less likely that we could identify individuals.
  • We have only requested data from the cancer registry which we need in order to undertake the planned analyses.
  • The accuracy of the data will be ensure through the quality assurance processes of the cancer registry
  • Data will be deleted by on 21 April 2025 by the University of Leeds data analytics team
  • The data will be held securely on the University of Leeds’ Laser platform with password protected access available for the lead researcher (Stephen Bradley) only
  • Appropriate records will be kept of the analyses undertaken and a plan has been made for how iterations of the data files will be named

We do not know of the identities of any individuals on whom data will be obtained so it will not be possible either to inform individuals that their data is being processed or for such data to be removed. However individuals who have opted not to have their data shared with the cancer registry will not be included in the data we have obtained.

For further information on data protection regulations please refer to the Information Commissioner’s website https://ico.org.uk/

If you wish to contact the study team or make a complaint please email Dr Stephen Bradley (lead researcher) medsbra@leeds.ac.uk or Dr Bethany Shinkins (Dr Bradley’s supervisor) b.shinkins@leeds.ac.uk