General Practice Data service for Planning and Research (GPDPR)

You may have seen in the media recently some articles about GPDPR, a general purpose collection of data which will enable faster access to pseudonymised patient data for planners and researchers.  Practices are legally obliged to accept the data provision notices served to them whch allows the extraction of data.

Please see NHS Digital’s website for further information https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research

How patients can Opt-Out

  1. Type 1 Opt-out* – a nationally produced form has been produced which patients can fill in and send to the practice (by post or email). Click here to view the form. Staff will apply relevant code to your records. This prevents any GP patient data from being extracted.
  2. National Data Opt-out – Visit the NHS website or use the NHS App (instructions below). This allows patient data to be extracted from the GP System to the national data base, but not then exported for Research Purposes.
  3. & 4. Primary Use Opt-out – we would suggest patients contact the surgery reception to discuss this. Patients should be aware of the impact this may have before the opt out is applied. If they still wish to go ahead then code as appropriate using below codes. (This will prevent the patient’s GP records from being shared with the Great North Care Record (via the Health Information Exchange) and can be detrimental to a patient’s care.

* this may be changing to provide patients with a single data opt out pending some national consultation

As a practice, we fully respect your right as a patient to control your data. We share data with other providers including the Great North Care Record and NHS Digital for secondary use.

You have the right to opt-out at any time from data being shared.

Your data is used in broadly two different ways:

  1. To provide you with care. This is called “Primary Use
  2. To allow for planning and research to be done. This is called “Secondary Use

Both uses will only be made where it is considered secure and appropriate to use patient data.

Opting-out of data sharing is an option for all patients, however it is not without potential downsides. For Primary Use data, if you opt-out and need care in a local hospital, for example, it may be much harder for the staff to access important medical information about you needed to provide safe and effective care. For Secondary Use, the downsides are more indirect. If everyone in the country were to opt-out, it would make it much harder to ensure funding is used in the NHS to develop services where they are needed. It would also be harder to develop new treatments.

It is possible to opt-out of specific parts of data sharing, while keeping some elements of data sharing in place. It is very common, for example, for people who have privacy concerns about Secondary Use, to be happy to continue sharing data for Primary Use/Direct Care.

The below table summarises what opt-outs are possible, and how to request them:

How data in your GP record is used, and how you can control the use

Primary Use – sharing your data for your direct care

Who it is shared with How it is used How to opt out
Summary Care Record These are used by NHS hospitals and other providers (e.g. midwives) to ensure they have the data needed to provide you with the right care. Opt out through your GP practice – contact the surgery reception to discuss this and we will be able to apply the opt-out
Great North Care Record

 

Secondary Use – Using your data to design health services and do health research

Who it is shared with How it is used How to opt out
Local NHS Organisations (such as Clinical Commissioning Groups) Using data to plan how to design local services around the needs of the population Use a ‘type-1 opt out’ – Please send this form to the practice by emailing to stynccg.farnhammedicalcentre@ nhs.net

 

NHS Digital Using data to plan and design national services around the needs of the population
External research organisations Using data for various research purposes Use the National Data Opt-out – Visit the NHS website, use the NHS App or call 0300 3035678

 

 

How to manage your sharing preferences using the NHS App

You can view or change your current preference at any time.

To view and change your preference in the NHS App:

  1. Go to Your health
  2. Select Choose if data from your health and care records is shared for planning and research.
  3. Select Make your choice.
  4. Review the information on the page, then select Start now.
  5. View your preference, then select Change if you want to change it.
  6. Update your choice, then select Submit.

You can also visit www.nhs.uk/your-nhs-data-matters.

 

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