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Secondary uses of data

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The BMA's vision is for doctors and patients to see improving healthcare and public health (through research, education, innovation and the effective management of healthcare resources) as a shared endeavour, in a society where:

  • patients recognise that the main purpose of collecting medical information is to assist their direct care, and also have a good general understanding of how it can be used for the continuing improvement of healthcare and public health, and support such use within an agreed framework
  • all data uses are fully transparent and in line with patient expectations
  • there is trust in the safeguards in place to prevent inappropriate disclosure or use of patient data
  • the benefits that can arise from appropriate secondary uses of data are understood and promoted
  • anonymised data is readily available for secondary uses, pseudonymised data can be easily accessed within an appropriate governance framework and there are practical mechanisms in place to obtain the required authorisation for the use of personal confidential data where such use is necessary
  • within the established frameworks, doctors are confident to release personal confidential data for secondary uses where the patient consents or other legal authority exists
  • information is easily available to the public promoting their understanding of medical research and encouraging opportunities to participate where appropriate – either through active involvement or the use of their data
  • it is recognised that the full benefits can only be realised where medical records are accurate, appropriately structured and coded and kept up to date.

 

When can data be disclosed for secondary uses?

We have drawn up guiding principles to help our members when they are considering how to respond to these types of requests, such as from researchers, from NHS managers who require the data for health service planning or from private companies providing risk-stratification services.

Read our guidance on disclosing patient data for secondary purposes

 

What are the key challenges when using data for secondary uses?

We recently carried out a review of the way data are currently used for secondary purposes. This review involved consultation with our members and the public, to explore the challenges with the way data are used for secondary purposes within the health system.

These challenges can be grouped into four broad themes:

1. Engagement with patients

The patients we spoke to felt that they lacked the right information to understand how the data collected about them can be used for secondary purposes such as research or planning health services. Patients may not be fully aware of the ways that healthcare can be improved by appropriate sharing of their data and also had concerns about whether there were sufficient controls and safeguards in place to allow such sharing.

We are talking to relevant organisations to encourage the provision of better, and more accessible, information about how their data are used for secondary purposes, and the benefits such use can offer. We are also working with other organisations to encourage efforts to build and sustain public trust by ensuring that the system is open about the ways data are used and manages data safely to minimise risk.

Public views

Read about our independently contracted research into the public's views about using health data for secondary purposes.

Find out more

 

2. Handling requests

Our members may receive requests for patient information to be used for research or to help with commissioning services. Requests should contain all the information the doctor needs to know about the type of information requested, and what it will be used for and the legal basis for the request. If this information is not fully provided, doctors are unlikely to be able to comply with the request.

The BMA is working with the HRA (Health Research Authority) to make the process researchers use to request patient information from GPs easier, quicker and more effective, to ensure doctors can comply with requests when appropriate and ensure they are meeting their legal and ethical obligations.

 

3. Shared endeavour between those requiring and providing access to data

A key part of our vision is ensuring that doctors, those who use data for secondary purposes and patients work together to ensure that information is shared safely and appropriately to benefit the healthcare system as a whole. 

We are raising awareness of the practical difficulties doctors face when trying to provide access to data for secondary purposes alongside their regular workloads. We are initiating conversations between different organisations to develop solutions that enable doctors to work more collaboratively with researchers, educators and healthcare service managers.

This includes ensuring that researchers provide feedback about the results of the research project to data providers and patients.

 

4. Resources

The doctors we spoke to said that they would appreciate more guidance on confidentiality and their legal responsibilities and access to information governance advice, so that they could be more confident about releasing information for secondary purposes.

This page includes up to date links to relevant information and guidance on releasing information for secondary purposes. It also provides links to reports by other organisations (see Further Reading).