Re: Patient confidentiality in a time of care.data
Sheather and Brannan(1) highlight the importance of linked administrative health data for commissioning, population health monitoring and research. We invite readers to consider whether the alternatives to using administrative health data represent a safer option.
We recently completed a study of chronic conditions in children who die in the UK(2) for the Department of Health. Using death records linked to the child’s longitudinal hospital record, we showed that 70% of children who died aged one to 18 years were affected by a chronic condition. These data did not contain personal identifiers, but access was strictly controlled by the data providers. Extending our work to linkage with national primary care data would allow evaluation of the use of primary care services in children who die. Extended primary care involvement has been recommended by the Chief Medical Officer.(3) Use of national primary care data through care.data would be essential for such analyses, but is not yet possible.(1)
One alternative to using linked administrative data is to collect new data. Child Death Overview Panels (CDOPs), run by the Department for Education as part of their child safeguarding remit, collect new data on all children who die in England to assess preventability. CDOP data contain personal identifiers yet is collected without the consent of parents.(4) CDOPs have no national standards for secure storage of the data. Confidentiality and governance controls are weak compared with controls for users of health administrative data such as care.data. Data from CDOPs are collected as free text, making it impossible to analyse, let alone collate at a national level. There has been no overall evaluation of the benefits of CDOPs for children and families and there is currently no linkage between CDOP data and administrative or death records.
Based on the reported staff time per death, we estimate that CDOP reviews cost around £20 million per year.(4) In contrast, the Office for National Statistics estimate a £10,000 to £50,000 annual cost of linking and analysing national birth records to death records and other administrative data sources.(5) CDOP data collection is therefore expensive, difficult to analyse and potentially unsafe. In comparison, care.data would generate nationally representative and coded data using secure data management systems. We suggest primary data collection should only be considered by the government after an assessment has shown that the purpose cannot be fulfilled using administrative data sources.
Rapid Response:
Re: Patient confidentiality in a time of care.data
Sheather and Brannan(1) highlight the importance of linked administrative health data for commissioning, population health monitoring and research. We invite readers to consider whether the alternatives to using administrative health data represent a safer option.
We recently completed a study of chronic conditions in children who die in the UK(2) for the Department of Health. Using death records linked to the child’s longitudinal hospital record, we showed that 70% of children who died aged one to 18 years were affected by a chronic condition. These data did not contain personal identifiers, but access was strictly controlled by the data providers. Extending our work to linkage with national primary care data would allow evaluation of the use of primary care services in children who die. Extended primary care involvement has been recommended by the Chief Medical Officer.(3) Use of national primary care data through care.data would be essential for such analyses, but is not yet possible.(1)
One alternative to using linked administrative data is to collect new data. Child Death Overview Panels (CDOPs), run by the Department for Education as part of their child safeguarding remit, collect new data on all children who die in England to assess preventability. CDOP data contain personal identifiers yet is collected without the consent of parents.(4) CDOPs have no national standards for secure storage of the data. Confidentiality and governance controls are weak compared with controls for users of health administrative data such as care.data. Data from CDOPs are collected as free text, making it impossible to analyse, let alone collate at a national level. There has been no overall evaluation of the benefits of CDOPs for children and families and there is currently no linkage between CDOP data and administrative or death records.
Based on the reported staff time per death, we estimate that CDOP reviews cost around £20 million per year.(4) In contrast, the Office for National Statistics estimate a £10,000 to £50,000 annual cost of linking and analysing national birth records to death records and other administrative data sources.(5) CDOP data collection is therefore expensive, difficult to analyse and potentially unsafe. In comparison, care.data would generate nationally representative and coded data using secure data management systems. We suggest primary data collection should only be considered by the government after an assessment has shown that the purpose cannot be fulfilled using administrative data sources.
References
1. Sheather J, Brannan S. Patient confidentiality in a time of care.data. BMJ 2013;347:f7042.
2. Hardelid P, Dattani N, Davey J, Pribramska I, Gilbert R. Overview of child deaths in the four UK countries, 2013, http://www.rcpch.ac.uk/system/files/protected/page/CHRUK_Module%20A%20lo..., Accessed: 30/09/2013
3. Chief Medical Officer. Annual report of the Chief Medical Officer 2012: Our Children Deserve Better: Prevention Pays, 2013, https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil..., Accessed: 09/12/2013
4. Kurinczuk JK, Knight, M. Child Death Reviews: Improving the Use of Evidence Department for Education, 2013, https://www.gov.uk/government/publications/child-death-reviews-improving..., Accessed: 09/12/2013
5. Office for National Statistics. ONS Consultation on Statistical Products 2013, 2013, http://www.ons.gov.uk/ons/about-ons/get-involved/consultations/consultat..., Accessed: 09/12/2013
Competing interests: Both authors use administrative health data for their research.