Focus group: Using NHS data for research

Using NHS data for research can help make people's lives better...

but what matters most to you?

The NHS in the East of England is developing a Secure Data Environment (SDE) to support health and care research using NHS patient data.

We are inviting people who live in Bedford Borough to attend a public workshop and:

• Find out what a “Secure Data Environment” is and how it works

• Have your say about how NHS data should be used for research in the East of England

  ---

• Who is this workshop for?

  Anyone who:

  • Lives in Bedford Borough
  • Would like to learn more about how NHS data is used in research and what this means for you.
  • Would like to join a discussion with other members of the public about how the Secure Data Environment should work.

  What is the purpose of the workshop?

  Whenever we go to a GP or hospital, information will be collected about us and our medical history. Only those who are directly involved in your care will be able to access your full patient record. But some of the information from your record may also be useful for specific purposes beyond your individual care.

  If different bits of health and care data from many different patients are linked up (after having identifiable information removed, like names and dates of birth), researchers and healthcare staff can look for patterns in the data. This helps them develop new ways of predicting or diagnosing illness, and identify ways to improve clinical care. A Secure Data Environment is a new way to help researchers do this which gives the NHS more control over how the data is used, to make sure patient data remains secure.

  We want to involve people living in the East of England in creating the Secure Data Environment. The workshop will help us understand your views on:

  • How to decide who should be able to access the data
  • What concerns people might have
  • What safeguards might help
  • What types of research you think are important for your region

   

  What will happen in the workshop?

  We will invite 8-12 members of the public living in Bedford Borough to take part. A Healthwatch representative will facilitate the workshop and help everyone feel comfortable and welcome. A member of the SDE team will also be present to answer any technical questions.

  We will first explain what the SDE is for and how it will work. Don’t worry if you don’t know anything about data or research! Everything will be explained plainly and without jargon. There will be plenty of time for questions.

  We will then have a discussion as a group. The facilitator will ask some open-ended questions and encourage everyone to speak up to have their say about what they think.

  There will be refreshments and a comfort break. The workshop should take about 2 hours in total.

  What will happen to my feedback?

  There are several Healthwatch events happening across the East of England. A report will be created from each event. The reports will be sent to the SDE team who will incorporate the feedback into how we will create the SDE. For example, your feedback reflected in the approval process that researchers will have to go through to use the SDE.

  We would eventually like to create summaries of these events to put on our website as well, to show what feedback we received and what we did with it.

  Your name or contact details will not be used in any reports or anywhere else outside of the SDE team. Any quotes from workshop participants will be anonymised.

  Will I be paid for taking part?

  You will be paid £50 for your active contribution to the workshop discussion.

  If you aren’t comfortable sharing your views in this type of setting, we have many other opportunities for getting involved in other ways. For example, we run regular Webinars with text-based Q&A. Please check our website (https://www.eoe-securedataenvironment.nhs.uk/) or follow us on Twitter/X or Facebook.

  I’m interested in joining but I have accessibility needs – will you be able to accommodate me?

  Please speak to Healthwatch Bedford Borough via email on enquiries@healthwatchbedfordborough.co.uk or via Phone/ WhatsApp 01234 638 678. We try to accommodate people as best as we can. If this particular event or venue is not suited to your needs, we will work with you to find another way to get you involved.