Devices for remote monitoring of Parkinson’s disease

Survey results depend on comprehensive distribution across the NHS, and on the sample of respondents being representative of the target population. Data collection should be restricted to essential outcomes only and the survey widely distributed across the target population. It will be additional to existing workload and demands on staff.

Large sample sizes may be needed to account for disease heterogeneity and capture the experiences of people from diverse socioeconomic and ethnic backgrounds or other subgroups of interest.

A feasible study will balance the need to capture adequate data on clinical impact against the costs and complexity of a long data collection period, which may not be acceptable to people with Parkinson's disease and their families.

Collecting more data beyond that routinely available, or extracting relevant data from electronic patient records of routine and acute care, needs dedicated research staff time. This must be factored into study budgets, plus clinical staff time for report interpretation and training.

Clinicians need training on interpreting reports from these technologies and there will be a learning period that may need to be measured or accounted for.

Although companies may provide training on interpreting reports, some centres have developed their own in-house protocol. For each technology, a standardised report interpretation template is necessary. A Delphi process could be run among clinical prescribers to generate a consensus statement and template before starting systematic evidence generation.

Information governance and consent to share person-level data with the companies is variable. Local NHS governance rules stipulate different strategic level agreements and contracts. Differences in NHS trust guidelines and policies are a known barrier to delivering multisite trials. This will need to be anticipated and engaged with directly.

The technologies perform differently for different movement parameters. Clinical prescribers who commented on the evidence generation plan said that remote continuous monitoring can be useful, but recognised there is a lot of variation in the way it is used. Capturing these views systematically in the survey may provide important feedback for the companies to inform product development and anticipate adoption challenges.