Clinical Manifestations.

Area of Science:

• Neurology
• Digital Health
• Patient-Centered Care

Background:

• Remote monitoring tools offer valuable data but face feasibility concerns in clinical settings.
• A patient-centered design is crucial for tool effectiveness and data quality in memory clinics.
• This 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-centered, effective, and well-tolerated by memory clinic populations.
• To produce high-quality data through a co-designed remote monitoring approach.

Main Methods:

• Engaged individuals 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 research, assessment choices, and digital task improvements.

Main Results:

• PPI significantly shaped the research, emphasizing outcome measure relevance and participant choice.
• Key outcome measures identified included daily activity, memory, relationships, and care needs.
• Study design was refined to maximize patient/relative choice and incorporate suggestions for digital and analogue assessments, deemed acceptable and feasible.

Conclusions:

• Integrating PPI created a patient-centered 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 promotes greater inclusion of patients and relatives.