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Parkinson's UK Research Interest Group

Parkinson’s Research Interest Group

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Newcastle University is working with Parkinson’s UK to develop a North East and Cumbria Parkinson’s Research Interest Group (NEC-RIG). They have designed a survey to get the opinions of people with an interest in Parkinson’s research about what this group might look like and how it might work.

The aim of the group is to bring people who have an interest in Parkinson’s research together to provide opportunities to take part in all stages of research. This can include helping researchers in universities and/or the NHS to identify important questions or issues to people with Parkinson’s, designing research studies that will help people who want to take part or identifying what the best ways are to tell people about the results.

To complete the survey or find out more, click the link below.

North East and Cumbria Parkinson’s Research Interest Group Survey

For more information contact Rachael Lawson: rachael.lawson@ncl.ac.uk or Rosie Morris: rosie.e.morris@northumbria.ac.uk.

GP

GP data sharing

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NHS Digital has recently announced plans to allow an NHS system to extract patient data from doctors’ surgeries in England. The new data-sharing system was due to start in July but has now been pushed back to 1 September.

If you DO NOT want your GP records to be shared, there are two ways to opt out:

  1. Stop your GP record data being shared anonymously with other NHS services for planning and development. This would prevent your data being used in the anonymous information local NHS service commissioners and decision makers use to plan services. You will need to complete the form called Type 1 Opt out form and return it to your GP practice before 1 September. Find the Type 1 Opt out form here.
  2. Agree to share your information with the NHS planners but NOT with external research organisations. You can do this online here, via the NHS App or by calling 0300 303 56 78.
Healthwatch England has joined forces with leading patient groups to respond to the Government’s plans around GP data sharing.
NHS Digital has recently announced plans to allow an NHS system to extract patient data from doctors’ surgeries in England. The new data-sharing system was due to start in July but has now been pushed back to 1 September.
Responding to the announcement today by Jo Churchill, Minister for Primary Care, on the Government’s plans around GP data, Healthwatch England has released the following statement with other patient groups – National Voices, the Patients Association and the Richmond Group of Charities.
“We welcome today’s move by the Government to extend the deadline for the GP data opt-out and allow NHS Digital and colleagues across the NHS, particularly those in primary care, to have the time and space to engage properly with patients and the wider public on these plans.
“In previous engagement work the public have told us that they are in favour of the NHS using their data for medical research if they understand how this information will be used and can opt out if they so wish. However, ongoing public support for this depends on complete transparency and clear communication from the NHS when things change.
“Over the next few months we need to see a proper nationwide campaign on this, reaching out to people so they can make an informed choice about how their own individual medical records are used to support research. This is a complex issue, and so we will all be working with the NHS to help build awareness and understanding.”
You can help make health and care services better by sharing your experiences and ideas.
Trusted Research Environment Strategy

Trusted Research Environment Strategy

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Get involved – help develop the region’s Trusted Research Environment Strategy

Across the North East and Cumbria, the ‘Health Information Exchange’ is being rolled out. This allows authorised health and care staff to view patient information held in different clinical systems across the region, at the click of a button. This helps GPs, consultants and other healthcare professionals see all of a patient’s health information in a joined up manner, to help them make decisions about your care.

 

What is the Trusted Research Environment Strategy?

This is about allowing other key people outside of those providing health and social care, for example, universities, to view this data for research purposes. Such research would help better understand the healthcare needs of local people, leading to better treatments, care services and planning for our region. The data will only be available for the length of the project and will be anonymised so that no individuals can be identified.

 

How you can get involved

The Academic Health Science Network for the North East and North Cumbria which is developing this strategy, would like to know what you think the benefits are of using information in this way, what the challenges might be, and what concerns you may have about health data being used for research in this way. If you’d like to take part or know someone who would, please contact mark.walsh@ahsn-nenc.org.uk

 

Read more about the development of this strategy

More information on the Health Information Exchange