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020 Real-time capture of patient-reported outcomes using a digital platform – a pilot study
  1. Wendyl D’Souza1,
  2. Nicholas Lawn2,
  3. Michelle Kiley3,
  4. Joe Frasca4,
  5. Emma Whitham4,
  6. Udaya Seneviratne5,
  7. Lisa Gillinder6,
  8. Patrick Carney7,
  9. Farhad Goodarzy8 and
  10. Andi Partovi8
  1. 1Medicine, St Vincent’s Hospital, The University of Melbourne, Fitzroy/Melbourne, VIC, Australia
  2. 2Western Australian Adult Epilepsy Service, Sir Charles Gairdner Hospital, Perth, Australia, WA, Australia
  3. 3Department of Neurology, Royal Adelaide Hospital, Adelaide, SA, Australia
  4. 4Department of Neurology, Flinders Medical Centre, Adelaide, SA, Australia
  5. 5Department of Neurology, Monash Medical Centre, Melbourne, Australia, Monash Medical Centre, Melbourne, VIC, Australia
  6. 6Neurology, Mater Hospital, Brisbane, QLD, Australia
  7. 7Neurology, Box Hill Hospital, Melbourne, VIC, Australia
  8. 8Keylead Health, Melbourne, VIC, Australia


Objectives To demonstrate proof of concept/feasibility of a novel digital platform using real-time capture of patient-reported outcomes for real-world research involving patients with epilepsy.

Methods The phone app collects multi-faceted patient-reported outcomes including seizure frequency, medication side effects, mood, anxiety, quality of life and cognition along with voice and digital images. Patients are invited through a national consortium of 18 adult epilepsy centres in Australia. The patient-reported information potentially allows feedback to their treating specialists and tertiary centre in near real-time, along with deidentified aggregation across all participating centres for comparison. Currently, more than 40 patients are enrolled. We present the outcomes of one patient, with the longest-running data points. The new platform was developed by KeyLead Health TM, Melbourne Australia.

Results The results report a single patient’s composite scores for mood, sleep, cognition seizures and medication side-effects from the first 1.5 months.

Conclusions Our digital phone platform has the potential to facilitate the more effective and efficient capture of longitudinal data enhancing real-world research data integrity along with patient and specialist engagement.

Table: Patient reported outcomes for single patient captured using digital phone app date 4/1 7/1 10/1 15/1 20/1 1/2 15/2 18/2

Side effects 4.5 3.8 3.4 3.4 3.4 3.4 3.3 3.8

Memory 9 1 7 5 5 6 7 6

Seizures 3 0 0 1 1 1 2 0

Reaction time 7.7 7.1 12.4 7.0 7.7 7.7 7.9 6.7

Mood 17 16 15 15 12 15 18 16

Sleep 12 6 8 4 3 10 8 5

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