MND & Me App – MND and Me Foundation

MND & Me App

PRISM: MND Toolbox App

The MND and Me Foundation works with people living with MND and their carers across Queensland. Our team recognised that there is a gap in the logistical coordination of the many medications, appointments and services that a person living with MND has to juggle. 

The PRISM: MND Toolbox App fills that gap! It is full of practical tools to stay organised and assist carers and family members with logistics.

Please note: Only clients of MND and Me will be able to access the App at this stage. 

 

To use PRISM please register your interest by completing the registration form.

Once your registration is complete you will receive an email detailing your username and a temporary password which you will need to create your profile. 

Registration Form

Tools in the MND and Me Prism Toolbox

A quick overview of MND, to familiarise someone who is newly diagnosed, or for anyone unfamiliar with the condition. 

It includes basic information  to answer questions you might have about symptoms and progression. 

This page is for you to establish an account and record personal details.

Your demographics information, contact details and MND diagnosis information is captured in this set of screens. 

Please note that this information is kept in the App only and not passed onto to anyone unless you choose to share it via a PDF document over email. 

This page is where you can set up profiles for all members of your Care Team. 

Your care team can include members of your family, clinical team, care and support team and other people you support you and your family.

This way you can store all their contact details in one spot. 

You can export this information as a pdf if you needed to distribute that information, for example if you are getting a new member of your care team, to put them in touch with your other specialists. 

This section is for users to record their symptoms. You may choose to do this as often as you like.

This data can be exported as a pdf and can be shared with your doctor or others in your healthcare team if you choose to.

There is the opportunity to enter data about overall well being, affected regions, fatigue, appetite and mental well being is collected as well as the ALSFRS (ALS functional rating scale) questionnaire.  

Keep track of your equipment and up to date with services.  You might like to store information about equipment providers, serial numbers and specifics about what comes with it.

You have the ability to input service reminders so that you can prevent issues arising with the equipment. 

This page provides a basic calendar function to remind you when your upcoming appointments. 

Once you have created an upcoming appointment you can use the “Questions I Want to Ask” section to record questions you want to cover during the appointment.

There is a Notes section to add general comments or reflections on an appointment, in case you need to refer back to it. 

Your past appointments are stored and can be exported to communicate with other members of your Care team. For example, when seeing your Speech Pathologist, you might be asked when you last saw your Neurologist? All that information is stored in this page! 

This section is for you to record the research projects you are involved in. You can record the name, purpose and contact person of the project. 

This tool is purely for the people living with MND- this information cannot be accessed by the team conducting the trial or anyone else. 

You will be asked to sign that you acknowledge you are participating in the research project or clinical trial entered. 

Here you can keep track of medications, nutrition and supplementary meals. 

Each medication is stored as a separate entry and can be updated at any time. 

Fields include name, status (“current” or “no longer required”), dosage details and you are able to take a photo of the actual packaging for reference. 

A history of changes is recorded in the entry and there is a section to capture information associated with changes.

Again this information can be downloaded to a pdf to be provided too others in your care team. 

The Notes section is where you can record additional information including; personal directives regarding your care, personal wishes, end of life arrangements and wishlists.

These wishes can be as flippant or as important as you would like- every one of your wishes has value. 

You can type, upload audio, videos or documents in these entries.

Please note that hospitals and other official facilities will need to sight some original documents such as advanced health directives but this is a place to store the documents until you can provide the originals. 

This section will be updated with MND specific news and MND and Me Events. 

PLEASE NOTE:

None of your information stored in the PRISM App can be accessed by the MND and Me Foundation, The University of Queensland or any other parties.

The data collected on the PRISM App is stored securely in cloud-based storage space in Australia under Australian Privacy Principles (April 2014) and also complies with the European Union GDPR privacy guidelines.

Only the user can choose to share their data by exporting as a pdf and sending it to whomever they choose. 

By downloading and using the PRISM App you will need to agree to the terms and conditions of the MND PRISM App.

The use of the MND and Me PRISM App is intended as a tool only, and does not replace the standard care you should access via medical or Allied Health professionals. 

MND and Me is not responsible for how the user chooses to use the PRISM App and how the user chooses to share their own information collected through the PRISM App.

Acknowledgements

The MND and Me PRISM App has been developed in collaboration with the researchers in MND at the University of Queensland.