In this enlightening episode of "BeeWellwith MS," Dr. Agne Straukiene explores the transformative role of digital platforms in the self-management of multiple sclerosis (MS). Joined by Finn Moxson, an experienced MS coordinator, the discussion delves into the integration of technology into patient care, emphasizing the importance of self-management and the significant impact of digital health tools.Key Topics Covered:
- Importance of Self-Management in MS:
- The role of self-management in enhancing the quality of life for people living with MS.
- The limitations of conventional assessment tools like the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite (MSFC).
- Digital Health Tools:
- Introduction to the Patient Knows Best (PKB) digital platform used at Torbay Hospital.
- Real-world outcomes from the PKB User Experience Project.
- Integration of patient-reported outcomes (PROMs) into MS management to capture the full spectrum of the patient experience.
- Global Patient Reporting Outcomes Initiative:
- The initiative’s aim to bridge the gap between clinical research and patient care by integrating patient-reported outcomes.
- The significance of patient voices in shaping effective care strategies.More info read here: Frontiers | The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event (frontiersin.org)
- Challenges and Solutions in Digital Platform Implementation:
- Addressing digital literacy and cognitive issues among the MS population.
- Strategies for improving recruitment and engagement with digital platforms.
- Future Directions and Innovations:
- Plans for further development of digital tools, including augmented reality for motor and cognitive function assessment.
- The importance of interconnected health records and a unified approach to patient-reported outcomes.
Guest Insights: Finn Moxson shares his background in psychology and his experience as a clinical research practitioner. He discusses his role in coordinating the PKB platform, the benefits observed from its use, and the positive feedback from patients. He emphasizes the necessity of continuous communication and education to ensure successful engagement with digital tools.
Call to Action: Listeners are encouraged to engage with digital health tools, participate in surveys and questionnaires, and contribute to the ongoing improvement of MS management. Agne and Finn invite listeners to share their experiences and join the conversation on social media and the podcast’s website.
Closing Note: Self-management is a vital aspect of living well with MS, and digital tools offer empowering support. By incorporating these tools into daily routines, patients can take a proactive role in managing their health and improving their quality of life.
Contact Information: Listeners can reach out with questions, comments, and suggestions for future episodes through social media channels or the podcast’s website at www.beewellwithms.com
Prisms Toxonomy article: The PRISMS taxonomy of self-management support: derivation of a novel taxonomy and initial testing of its utility - PubMed (nih.gov)
Our Connect plus app: CONNECTPlus App: MS Case Study | Health and Care Innovations (hci.digital)
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