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UHNM host PKB event for Hereditary Angioedema (HAE) patients

Patients from University Hospitals of North Midlands have learnt how they could benefit from an online personal health record system, ‘Patients Know Best’, to record changes to their condition.

Patients Know Best (PKB) is an online portal which brings together patient information from the Trust and patients own recorded data into one secure health record, helping to deliver high-quality, integrated care while also giving patients the opportunity to better manage their health at home or wherever they may be.

The Immunology team invited Hereditary Angioedema (HAE) patients to Royal Stoke University Hospital to hear about how PKB can support their condition using specific resources. People with HAE develop unpredictable attacks of swelling anywhere on their body, which can cause severe abdominal pain and occasionally potentially life-threatening throat swellings.

Patients were shown how to use the app to record attacks and to access care plans and emergency letters to share with health care professionals at UHNM and elsewhere. 

Nicholas Harrison, IM&T PKB Project Manager said: “In addition to usage across UHNM for all patients, PKB is specifically being used within Adult Allergy and Immunology, HAE services to provide patients with specific resources to support their condition. These include a library and attack diary allowing patients to conveniently and accurately record any attacks in real-time and provide this information seamlessly to their Immunology team at UHNM.”

HAE UK Chief Executive Angela Metcalfe also attended and spoke about the patient organisation, which raises awareness and advocates for patients.

Dr Sarah Goddard, UHNM Consultant Immunologist, said: “I would like to thank Nick and the team from PKB as well as Angela Metcalfe from HAE UK.  Hereditary Angioedema is a rare condition, which is finally getting some good treatment options.  It is really rewarding to be able to offer patients new ways of managing the condition and communicating with HCPs.”

Clinical teams can access a real-time health record to help them make important clinical decisions based on accurate information from all the different health and care providers involved in the patient’s care.  For more information see here