Public confidence in the use of patient data

The Wellcome Monitor (Wave 3) found that almost four in five of the public (77 per cent) say they would be willing to allow their medical records to be used in a research study if they were anonymised.  

However, there is little understanding of what this actually means in practice.

Our position

The public need to have confidence in how their medical records are used. This will require both openness and transparency.

What we're doing

Independent patient data taskforce

Following the launch of the Caldicott review, we're supporting and hosting an independent taskforce on the use of patient data. It will develop innovative approaches and tools to encourage more effective communication about how patient data is used. 

Access to patient data by commercial organisations

We know from previous research that, while most people are happy for their medical records to be used for research, many are uncomfortable with the idea of companies accessing their medical records.

In March 2016 we published a report on public attitudes towards commercial organisations accessing health, medical and genetic data. We commissioned Ipsos MORI to undertake in-depth research that included exploring where there may be ‘red lines’ for purposes or data users that people find unacceptable.

See the: 

The research benefits of using patient data

To demonstrate the enormous value of using data from patient records to improve health, we’re working to develop a range of case studies from the research that we and other funders support.

Steps to increase public confidence

We're recommending that six key actions are necessary to avoid repeating the mistakes of This NHS England initiative to extract patient information from GP databases across the country attracted widespread criticism in 2014.

  1. Create clear governance with a single framework for accessing patient data.
  2. Develop requirements for securing data facilities and accredited safe havens.
  3. Define how researchers can and cannot access and use data.
  4. Develop a single communication strategy with clear information to reach the widest audience.
  5. Be clear about the patient opt-out process.
  6. Develop methods to safeguard patient identification.             

The background to these recommendations is outlined in our briefing: Ensuring the effective use of patient data [PDF 314KB] 

More information

Contact us

If you have any questions, contact Natalie Banner:


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