Innovative patient partnership leads to greater transparency about use of patient data in stroke research
Posted on the 7th March 2018
As part of research taking place to improve the stroke pathway in Greater Manchester (GM), the GM Connected Health City (GM CHC) have developed Aphasia friendly information leaflets & posters to demonstrate how we use de-identified patient information.
At Connected Health Cities we use patient data to discover insights into how we can improve the delivery of health and social care for citizens across the North of England.
We understand that this information is sensitive and we want to be open and transparent about how it’s used. For the Greater Manchester stroke project – data is collected from patients who have visited Hyper Acute Stroke Units in order to:
improving the recognition of stroke by pre-hospital clinicians
ensure the correct measures are in place to reduce the risk of a recurrent stroke
reduce death and disability for patients presenting with intracerebral haemorrhage
Before we access this data – name, address, date of birth and electronic patient number are removed. We want to know what has happened, but not who it happened to.
To ensure that the patients from whom we collect the data are aware of our research we have collaborated with Speakeasy – a specialist aphasia charity supporting communication to develop patient information leaflets that are accessible for all our audiences.
Aphasia is a communication disability that can affect patients who have suffered a stroke or other damage to the language parts of the brain.
Gill Pearl (CEO of Speakeasy) worked with Speakeasy members to design materials explaining the three work steams of the project and how this research will help to improve the diagnosis and treatment of stroke for patients across the region.
Creating content like this is a collaborative process – by bringing together information from the research group with the expertise within Speakeasy we were able to develop documents that are both informative and accessible for the intended readers.
At Connected Health Cities we are working to create a social license for our research. By demonstrating how we use data we hope to maintain the trust of the patients and public we serve.
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