Patient Reported Outcome Survey Progress
Thank you, thank you, thank you to ALL the people who have ensured that we are half way to the minimum target numbers already! This support is very gratifying and much appreciated. Some respondents are not technology users but have asked for help and made it happen. What stars you are!!!
Meeting the completion target by Christmas - how can this objective become a reality?
The research team are aware that some people are slow to return to the survey when choosing the 'save and return' option. There has been a couple of calls for support due to difficulties. These people have received prompt support and managed to complete the task soon after. If there are indeed consistent areas of difficulty with this new technology survey tool it is important that the technology team learn about issues so please reach out and let us know by emailing email@example.com or call 1800 802 568. Help is at hand!
MGNSW and MGAQ have actively approached their Myasthenia families and also the Specialists who regularly support these members. As a result, the participation rates are very high in these States. Making further contact in the States without established Associations is important. Everyone needs to be have an equal opportunity to be supported via this data. Individuals in these States can help by offering to share the link directly with affected others and by appealing to their Specialists to support this project. If people are not comfortable with this latter step, the MAA is there to make contact. Please notified us of the Specialist’s contact details including the clinic receptionist details. Send the information to firstname.lastname@example.org.
As this project is here to help all MG Australians, please help the MAA Board in making this project a success. Share your ideas with us! - What else can be done? - What are the obstacles?
Didn’t choose to proceed but now want to - email email@example.com or call 1800 802 568 for assistance.
Remember - as soon as the target is reached, the data analysis can begin and information can be made accessible.
Use this link - https://redcap-bdsi.anu.edu.au/surveys/?s=PWPFW73R73
Another progress update will be given in mid December.
Susan White, MAA Chairperson.