Although I have been involved in research before, this is the first time I have led on the ethics application and attending the ethics committee on my own. Professor Sarah Tyson from University of Manchester is supervising this project and her support made sure the application was accurately completed. With the outcome of the committee pending, I am considering the insight into the potential issues of a project such as ours that this process has given me.
Accessibility is a major concern when there may be communication or mild cognitive difficulties. The need for ‘informed consent’ demands that a great deal of detail is provided to each potential participant which sits at odds with the simple clean messages required for easy access. We have created an easy access version of the information sheet and consent form – looking at them I know which I would prefer to read!
Duress of data collection for the participant is another issue which needed to be addressed. The outcome measures can be quite demanding especially for those with fatigue. Thankfully, as an experienced clinician I am able to judge when a patient is starting to struggle, but this needed to be made clearer in the documentation.
Ending the study well has been raised because of the potential benefits of participation in our study. We are hoping that stroke survivors will learn more about the use of apps and the internet, and that Howz is a useful addition for them. How do you take that away equipment that has been so helpful? We have agreed that each case will be looked at in detail, and participants will be supported to access the internet through other means if they cannot continue with home use. As a company, we have agreed that if the Howz system is helpful we will leave the system in place for the individual.
Fingers crossed for the outcome of the application, then watch this space as we start recruitment! I am so excited about working with stroke survivors on this project.