Providing Care in Research Through Personalized Reports

People participate in clinical research for many reasons. Whether it’s giving back to the community that has provided them care; paying it forward so the next generation benefits from research innovations; having a personal connection to the cause; or other reasons.

But when participation leads to highly impactful innovations in care, the rewards can be even greater.

“We really only spend a few hours every year in a clinic, being educated on our condition, getting care. But we spend 365 days a year in our bodies, experiencing symptoms as we go about our lives”, says Larry Linton, an employment lawyer and ONDRI Patient & Community Advisory Committee member.

Larry continues: “Having meaningful, real-time information on our health and lifestyle indicators, tailored to our needs and those of our carers, would be a really important step moving forward, speaking both as a person living with Parkinson’s disease, and an advocate. That’s why I’m excited to be supporting this important research”.

The digital revolution provides enormous opportunities for innovation in healthcare.

New technologies can record and monitor many different aspects of health and wellness. Technological advances allow significant amounts of data to be stored and sorted. Products like the Fitbit™ and Apple™ Watch sit on the user’s wrist and provide data that can track some health and wellness measures.

But just having widgets does not allow you to meaningfully monitor and report on most healthcare conditions.

To do this effectively, customization and extensive usability research is needed, especially for populations who live with restrictive health conditions.

ONDRI is using remote patient monitoring technologies

ONDRI, through Aim 2, is studying people with neurodegenerative disease, dementia and stroke, in their home and community settings, using remote patient monitoring technologies to capture data on a day-to-day basis. This focus on data monitoring and reporting has centred on four main aspects:

• Capturing the right data, using tools that can be worn and tolerated by people living with the conditions studied
• Converting the data captured to the right outcome measures, which have a real impact on health and wellbeing, and are processed in a timely way
• Presenting the data in a manner that is understandable to the audience and meets their needs – whether that be the person living with the disease studied, a carer or healthcare provider
• Using the data to inform clinical- and self-care, in order to positively impact health outcomes.

“What is really critical to the flow of information coming from the remote patient monitoring technology used in ONDRI studies is its usability, at the end. We need to present the information back to study participants, to their carers and healthcare providers in a timely way and focus on data that is meaningful and provides them utility.” says Bill McIlroy, PhD, Professor and Director of the Neuroscience, Mobility and Balance Lab at the University of Waterloo and ONDRI’s Aim 2 Lead.

Meaningful, customized reporting is just the beginning.

ONDRI researchers are working on new study protocols that will continue to employ cutting-edge remote monitoring technologies, allowing people living with neurodegenerative disease, stroke and dementia to participate in research and receive care in their homes and communities, where they feel most comfortable.

Stay tuned as ONDRI continues to re-imagine the patient centred management of neurodegenerative diseases!