Project Timeline
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2016 PPI co-design workshops identified:
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Preference for a human voice rather than the Google text-to-speech voice.
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Addition of a visual timer to timed fluency task.
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Addition of a simple “thank you” message at completion.
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2018 further PPI and clinician workshops identified:
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Human voice was “suitable and understandable”. Use of a face rather than full body was preferred as it is “easier to interact with”, “easier to concentrate on”.
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The preferred time to use this is: “Early on, around the time when they first sought medical help”.
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Access to a diagnosis earlier “means plans for the future can be made quicker”.
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November 2018 session with dyads of PwMCI and dementia and their care partners co-produced a recruitment film and advised on the Patient Information Sheet (PIS) and consent forms. The film (https://cognospeak.github.io/website/PPIE.html) is embedded in the current electronic PIS.
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June 2019 Blackburn & Christensen visited Aga Khan University Hospital, Kenya with English and Swahili versions of CognoSpeakTM. This exposed problems with language and cultural barriers to standard tests and tasks.
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March 2019 stroke survivors queried how results would be communicated and suggested multiple options (phone, email, post or face-to-face).
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October 2019 & March 2020 two stakeholder events were facilitated by m-Habitat and included Therapy Box, PwMCI and clinicians (GPs, psychiatrists, memory clinic nurses, occupational therapists and neurologists). ”Tool might provide a more efficient early-stage service and reduce the waiting/stress for people awaiting diagnosis”. They also felt it could standardise the monitoring of PwMCI.
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Summer 2020 now Working with Yussuf (ISRAAC) to shape this project. In particular input about, use of Research Champion; using ISRAAC as a hub when approaching linked BAMER associations; initial understanding of language barriers e.g., meaning (and stigma) of word ‘dementia.