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We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.

ObjectivesTo evaluate the processes involved in using a novel digitally enabled healthcare system (telehealth in motor neuron disease (TiM)) in people living with motor neuron disease (MND) and their informal carers. We examined TiM implementation, potential mechanisms of impact and contextual factors that might influence TiM implementation or impact.DesignAn 18-month, single-centre process evaluation within a randomised, pilot and feasibility study.InterventionTiM plus usual care versus usual care alone.SettingA specialist UK MND care centre.Participants40 patients with MND and 37 primary informal carers.Primary and secondary outcome measuresPatient, carer and staff outcomes and experiences using semistructured interviews. Descriptive data on implementation and use of TiM.ResultsThe TiM was acceptable and accessible to patients, carers and staff. Intervention uptake and adherence were good: 14 (70%) patients completed a TiM session at least fortnightly. Barriers to TiM use (such as technology experience and disability) were overcome with well-designed technology and face-to-face training. Reported potential benefits of TiM included improved communication and care coordination, reassurance, identification of complications and the potential for TiM to be an alternative or addition to clinic. Benefits depended on patients’ current level of needs or disability. The main challenges were the large number of alerts that were generated by TiM, how the clinicians responded to these alerts and the mismatch between patient/carer expectations and nurses actions. This could be improved by better communication systems and adjusting the alerts algorithm.ConclusionTiM has the potential to facilitate access to specialist care, but further iterative developments to the intervention and process evaluations of the TiM in different services are required.Trial identifier number ISRCTN26675465.

Objective Current practice and guidelines recommend the use of neck orthoses for people with amyotrophic lateral sclerosis (ALS) to compensate for neck weakness and to provide surrogate neck control. However, available options are frequently described by patients as restrictive and unsuitable and there was a need for a new device that addressed the needs of people with ALS. MethodsThis project utilised a co-design process to develop a new neck orthosis that was more flexible yet supportive. Following development of a prototype device, an extended evaluation phase of work was undertaken. The evaluation methods included a questionnaire and interviews with patients and carers. ResultsTwenty six patients were recruited to the study, with 20 of these completing all phases of data collection. Participants described the impact of neck weakness on their life and limitations of existing supports. Evaluation of the new orthosis indicated positive views regarding the range of movement, support provided, flexibility of use, and elements such as the appearance and comfort. Feedback enabled modification of design to achieve better optimal fit. ConclusionsThe results of this evaluation highlight the value of this alternative option for people with ALS, and potentially other patient groups who require a neck orthosis.

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