Speaking out on Care.data

Care.data

The leaflet sent to all households

Find out about the NHS England scheme to pull all your personal medical records onto a single national database, and how your feedback encouraged managers of the scheme to pause for a rethink.

Background

In January 2014, NHS England’s ‘Better Information Means Better Care leaflet was meant to go to every household in Devon.

The aim was to inform patients and the public that sharing their medical records could help the NHS to ensure quality and safety of services, and to identify areas for research or investment.

The leaflet explained that people could opt-out of the “Care.Data” scheme if they did not want their medical information shared, by contacting their GP.  But concerns were raised almost immediately from members of the public as well as GPs, who were worried about where this information would be shared.

What we did

In February Healthwatch Devon ran a rapid response survey, asking Devon residents:

  • Whether you had received the leaflet
  • If so, whether you understood it
  • If you would consent to having their medical data shared as part of the  Care.Data scheme

Our findings, from around 100 responses, echoed the national concerns about the effectiveness of the public awareness campaign, and the ability of patients to make an informed choice about opting in or out.

Our Findings

Our headline findings were:

  • 42% of respondents told us they had not received the explanatory leaflet
  • 1/3 who had seen the leaflet were not sure they understood it
  • 69% said they would not give permission to their GP to share their medical information

For more information, see our Final Report.

Follow-Up

Our follow-up to the survey has been to continue to inform people about the care.data scheme by publishing our report.  We have also shared our findings with Healthwatch England and with health service commissioners in Devon.  And following representation by Healthwatch England at the national level, we have welcomed NHS England’s decision to defer the roll out of the scheme until Autumn 2014.

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