A New Era of Care for Parkinson’s Disease?
Before addressing a problem, it is important to define it.
Parkinson’s disease (PD) is a progressive, degenerative disorder of the central nervous system. It is characterized by both motor (tremor, rigidity, bradykinesia, postural instability…) and non-motor symptoms such as depression, sleep disorder, dementia, anxiety, cognitive issues and many more. After Alzheimer’s, Parkinson’s disease is the 2nd most common neurodegenerative disease for which currently, there is no known cure.
Over time, we have spoken to, visited and surveyed many people who have been affected by Parkinson’s Disease. The goal behind this was simple, we wanted to get a deeper and more human understanding of the problem at hand. Many people spoke of shortcomings in the care they received and we realised that there were several points that kept popping up…
Issues with Parkinson’s Care
Time Constraints
Time is a scarce resource in Parkinson’s care with many patients able to see their clinicians only a couple of times a year for brief consultations. Medical specialists are under increasing pressure to effectively treat a complex disease that differs significantly from patient to patient.
Scarce Specialist Knowledge
Effective treatment of Parkinson’s requires the knowledge of a specialist and some explained that there are disproportionately fewer Parkinson’s specialists than the number of patients depending on what region you live in. As one person said;
“It can be a bit of a Postcode Lottery really…”
Due to the lack of available specialists, we heard from many patients and carers who felt it was necessary to take treatment primarily into their own hands. They told us how they found themselves spending countless hours reading up on treatment and researching advice on life with Parkinson’s. However, most information on the disease proved difficult to understand for people with no prior medical knowledge. Charities and organisations go someway to fill the gap but there is still a deficit that needs tackling.
Issues with the Parkinson’s Perspective
Focus on Motor Symptoms
One of the first thing people say when you mention Parkinson’s is:
“Oh yes, those people have tremors, don’t they?”
This sentence neatly sums up a large part of the problem. Much of the awareness is on motor symptoms as they are visible and have become observable through developments in wearable technology, however, this is only the tip of the iceberg. The non-motor symptoms are more hidden which makes them harder to detect and therefore treat. In most cases, it relies on the patient being self-aware and also willing to divulge information to their specialist.
No Complete Picture
With the focus of care being mainly on motor symptoms, it is very difficult to build up a holistic and accurate picture of the individual and PD progression over time. This is particularly taxing on those living with Parkinson’s as they have little insight into how their non-motor symptoms fit into the picture.
The Result
The result is a level of care that fails to capture the complexity of the disease. What is more, people with Parkinson’s can often lack sufficient information to take part in shared-decision making or participatory medicine. Patients and carers we spoke with said they often felt isolated, misunderstood, demotivated and generally, “in the dark” about disease treatment, progression and generally what to do next.
Our Interpretation
The disease is a complex phenomenon with motor and non-motor symptoms and in the interest of developing effective care for the individual, we need to look at the complete picture, in all its entirety, over a prolonged period of time.
It became clear that we needed to build something that:
- Captures motor & non-motor symptoms
- Tracks both continuously over time
- Empowers the patient with information on their own condition
- Alleviates the overburden on clinicians and nurses whilst relieving the stress on the Parkinson’s care ecosystem
- Boosts the value & efficiency of patient-clinician/nurse interactions
What we are building…
We are on a mission to improve the lives of those impacted by Parkinson’s Disease. We are building a product that provides you with dynamic, real-time insights into your own PD. It consists of two parts:
The Watch — Monitors motor symptoms
The App — Track non-motor symptoms and lifestyle factors
We want to provide you with insights so that you make better-informed decisions and can be more participative in your choice of care. This will allow for the following:
- Truly personalised care for the individual living with Parkinson’s
- More efficient consultations with your specialists
- More effective self-management of the disease
We are opening the door to a new era of patient-centric care for those living with Parkinson’s Disease.
Want to be a Beta Tester for our dedicated Parkinson’s App? 😇
Sign up on our website here!
