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Summary
This summary is machine-generated.

Patient and Public Involvement (PPI) was key to developing a patient-centred remote monitoring study for dementia and mild cognitive impairment. This approach ensured the study design met patient needs and preferences, improving feasibility and inclusion.

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Area of Science:

  • Neurology
  • Gerontology
  • Digital Health

Background:

  • Remote monitoring tools offer valuable data but face feasibility concerns in clinical settings.
  • A patient-centred design is crucial for tool effectiveness and data quality in memory clinics.
  • The study aimed to integrate Patient and Public Involvement (PPI) into developing a remote monitoring study for the Oxford Brain Health Clinic.

Purpose of the Study:

  • To systematically integrate PPI in the development of a remote monitoring study.
  • To ensure the study design is patient-centred, effective, and well-tolerated by memory clinic populations.
  • To produce high-quality data through a user-informed approach.

Main Methods:

  • Engaged people with dementia, mild cognitive impairment, relatives, and dementia research volunteers.
  • Utilized workshops, surveys, user-testing, co-production with a lay member, and PPI panel consultations.
  • Incorporated feedback on relevance of outcome measures, choice in assessments, and digital task improvements.

Main Results:

  • PPI significantly shaped the research, emphasizing relevant outcome measures (activity, memory, relationships, care needs) and patient choice.
  • Improvements were suggested for digital tasks, including device compatibility and analogue alternatives.
  • The resulting study design maximizes patient/relative choice and collects data on high-priority outcomes, deemed acceptable and feasible by PPI consultants.

Conclusions:

  • Integrating PPI created a patient-centred remote monitoring study aligned with patient and relative needs.
  • PPI is invaluable for digital assessment studies in clinical populations, challenging assumptions and improving outcomes.
  • This approach enhances study acceptability and ultimately promotes greater inclusion.