Digital therapy for chronic tic disorders and Tourette syndrome: early value assessment

There is high variation in services available to the population. The contributing services or centres should be chosen to maximise the generalisability of evidence generated. For example, by including groups of people with different socioeconomic status, or to improve data collection for any relevant subgroups. Developers should provide clear descriptions of the services and settings in which the study is done, and the characteristics of the included children, young people and adults.

There is an unmet need for diagnosing and treating tic disorders and Tourette syndrome, and access to treatment also varies across the NHS. This will bias which centres or services are selected for data collection. This could also bias which centres adopt the technology and increase health inequalities.

The developer should provide training for staff to support use of the technology.

The ORBIT 'e-coaches' need time for training and supervision, and to get a thorough understanding of the digital content. They also need time to support people accessing the technologies and to review their progress. Oversight of the e-coaches by more senior professionals also requires staffing time.

There is an unmet need for diagnosing tic disorders and Tourette syndrome. This should be considered when assessing the inclusion criteria for future studies and is likely to lead to selection bias.

Evidence generation should be overseen by a steering group including researchers, commissioners, healthcare professionals, and people with lived experience. 

The evidence generation process is most likely to succeed with dedicated research staff to reduce the burden on NHS staff, and by using suitable real-world data to collect information when possible. 

Careful planning of the approach to information governance is vital. The developer should ensure that appropriate structures and policies are in place to ensure that data is handled in a confidential and secure manner, and to appropriate ethical and quality standards. Once the evidence generation period has concluded, ideally further data about the clinical impact of the digitally enabled therapy for chronic tic disorders and Tourette syndrome could be collected to support planning and decision making.

The technology may not be suitable for everyone, for example people without access to, or who cannot use, a smartphone or computer. People with cognitive impairment, problems with manual dexterity or learning disabilities may need additional help from carers or advocates.

The digital technology could be more beneficial if it is set up to ensure that language and cultural considerations of its users are met, and the digital literacy of people using it is considered.

People from ethnic minority backgrounds are underrepresented in terms of accessing the appropriate services for tic disorders and Tourette's syndrome. This could impact study recruitment and access to the technology.