In Conversation with the My MPN Voice app team – Dr Patrick Harrington, Debbie Street and Mark Taylor. The team talk to Nona about the recently launched My MPN Voice app:
- the objectives and goals of the app and associated research study that patients will be taking part in, via the app and the wearable devices, recording daily biometric data and scoring of symptoms
- the benefits for patients using the app to be able to keep a daily record of symptoms using the MPN 10 symptom assessment tool, which can be shared with healthcare teams
- direct links via the app noticeboard to the MPN Voice website; HealthUnlocked; health and wellbeing advice
- the launch, in four stages, of the app and the linked research study and the importance of collecting data from MPN patients and how this data will be presented at medical conferences, patients’ forums and published in medical journals
- the partnership with Sanius Health who developed the app in collaboration with MPN Voice
- the partnership with the Guy’s & St Thomas’ NHS Foundation Trust
- data protection and privacy of the data, the protocols the data is subject to and the rigorous process of internal and external ethics review that was carried out by Guy’s & St Thomas’ NHS Foundation Trust
The My MPN Voice App – will help to amplify your story and connect you with a community that understands.
With the My MPN Voice app you can:
- Track your health journey by capturing your quality-of-life data (the MPN 10 symptom assessment)
- Participate in patient-led research to contribute to a future where MPNs are a thing of the past
If you would like any more information about the app or have any questions for the team, email them at projects@mpnvoice.org.uk
We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk. If you have any suggestions for future conversations please let us know.
We would like to thank the team for taking part in this conversation with Nona.
Donate to MPN Voice – MPN Voice would not exist without donations, fundraising and grants, we are kindly asking everyone to be as generous as they can to help us support our ongoing projects supporting the MPN patient and healthcare communities. We would be very grateful for your support with a donation to MPN Voice which you can make via the MPN Voice JustGiving page, thank you.
