Innovative effort to digitally transform paediatric epilepsy care using 'Patients Know Best' at a district general hospital in UK
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Authors
Rao, T.S
Stevens, E
Gandhi, V
Joshi, A
Tyagi, V
Goodge, H
Hunt, M
Begum, A
Issue Date
2022
Type
Scientific Paper
Language
Keywords
Research Subject Categories::MEDICINE::Dermatology and venerology,clinical genetics, internal medicine::Internal medicine::Paediatric medicine
Alternative Title
Abstract
Innovative effort to digitally transform paediatric epilepsy care using ‘Patients Know Best’ at a district general hospital in UK
TS RAO1, E STEVENS2, V GANDHI1, A JOSHI1, V TYAGI1, H GOODGE1, M HUNT2, A BEGUM1, U PANCHAL3
1Luton and Dunstable University Hospital, Bedfordshire Hospitals NHS Trust, Luton, UK; 2Cambridgeshire Community Services, Luton, UK; 3Clinical Commissioning Group, Luton, UK
Patients Know Best (PKB) is a digital platform developed by independent social enterprise that supports NHS by sharing information with patients in a secure way. This enables patients to have a better understanding of their care empowering them to become the drivers of their own health outcomes.
Objectives: By building a single digital patient held record the project team aimed to empower parents of children and young adults with epilepsy to hold and monitor their own health information, contact epilepsy team, have access to reports and letters, access to library of paediatric epilepsy information and share videos and diary of seizures with professionals.
Method: Between June 2020 and July 2021, a team of paediatric epilepsy professionals working across community and hospital developed the project building contents of digital platform utilising the existing application on PKB modifying for epilepsy care, monitoring the outcomes using PDSA (Plan, Do, Study, Act) method while incorporating the improvements at each stage. Parents of complex epilepsies ad young adults were involved in building the content. The key components of the digital platform are a readily available secure digital record of patient information on any web-linked device, enabling two-way communication between parents and professionals including videos, patient entered seizure diary, library of medical information related to epilepsy and intention to integrate platform with all hospitals and GP records. The project is at pilot stage and will be extended to entire epilepsy patient population at next stage.
Results: Parents and young adults who were recruited in pilot stage have readily approved the PKB digital platform and were also involved in co-designing some of the components. We will share the experience and outcomes individual case reports at the conference including the features of the project.
Acknowledgements: Luton Clinical Commissioning Group for securing funds from NHS England.
Description
Citation
Rao, T. S., Stevens, E., Gandhi, V., Joshi, A., Tyagi, V., Goodge, H., Hunt, M., Begum, A., (2022) Innovative effort to digitally transform paediatric epilepsy care using 'Patients Know Best' at a district general hospital in UK. Developmental Medicine and Child Neurology. 64(Suppl 1): 40. DOI: https://dx.doi.org/10.1111/dmcn.15123