New monitoring system for rare disease patients

© BERLINSTOCK - Fotolia.com

The application, which was successfully launched last year, was designed to provide much-needed support to patients to improve their wellbeing, improve disease management and facilitate research of chronic and rare diseases in a platform that connects doctors, patients and medical enterprises.

The digital platform connects patients in a secure environment, or 'circles of care', where they can share valuable health information and offers a community in which people can connect and offer support to each other.

Co-founder and chief medical officer, Geoff Appelboom (MD PhD) began developing the technology in 2009 while working in the Neuroscience Research Unit of Columbia University in New York.

In the US, it has collaborated with the Neurological Institute of Columbia Medical Center to focus on research projects in the setting of post-operative care. This study uses activity tracking to assess functional recovery after surgery, and involves thousands of registered patients.

Managing chronic disease

With more than 20 million South Africans living with chronic disease, which is responsible for 70% of all deaths, this technology has the potential to revolutionise patient participation in healthcare, and fundamentally alter the economics of patient care.

It also intends to assist individuals who have been affected by widespread diseases such as diabetes, cancer, cardiovascular diseases, and chronic respiratory disorders by helping patients manage their conditions more effectively. It does this by tracking factors such as mood, quality of life, response to new medication, pain and key vital signs. It has also integrated a range of connected monitoring devices that provide seamless gathering of patient data. The results of the data from these smart 'wearable' devices synchronise automatically into the patient's FOLUP profile.

The unique mobile app will give RDSSA patients the opportunity to trace and monitor their own symptoms. This will replace the patient diary during extended periods between consultations that are sometimes not long enough to cover all the details and aspects needed to validate findings and thus prescribe the best treatment. Overall, it will provide more reliable monitoring and patient feedback and enable specialists to suggest workable solutions and capture more accurate data for further investigation.

The mobile platform also gathers data from a broad range of blood pressure cuffs, glucometers, wireless bodyweight scales, activity monitors, heart rate monitors and other multifunctional connected medical devices.

Tracking health

Kelly Du Plessis, the chairperson and founder of RDSSA comments, "It is about encouraging patients to track their health, connect with other patients and family members, communicate about their disease and share information through access to FOLUP. Ultimately, the application promotes the same principles on which the RDSSA was founded - patient care and support - and is an excellent way for patients to be actively engaged in and take more responsibility for their own health. This allows their practitioner to monitor them better and therefore manage their symptoms and the side-effects of treatment."

Simon Spurr, co-founder and CEO of FOLUP concludes, "The company collaborates with medical and healthcare enterprises to enable seamless data with the potential to affirm diagnosis, prevent long-term side effects, improve treatment and ultimately increase patient care. We are excited to collaborate with the RDSSA. Through this partnership we will develop an innovative digital platform that will help these patients, their associated providers of care and generate data for research purposes - fundamentally improving this ecosystem."

The technology removes obstacles such as geographic distances and time barriers and the affordability of smartphones has made this application accessible to everyone in the rare-disease and health community.

For more information, go to www.rarediseases.co.za.