Digital Health in Parkinson Disease: Patient Perspectives, Emerging Innovations

As a complex multisystem disorder characterized by both motor and nonmotor symptoms, Parkinson disease (PD) has been identified as a suitable fit for technology-based improvements in treatment, according to the authors of a review published in the Journal of Parkinson’s Disease.

Although the field of telehealth has been researched and established in PD, and access to smartphones has risen substantially in recent years, the investigators wrote that patients are often steered away from digital innovations.

“Even though patient engagement has been suggested to have clinical effects on levels comparable to ‘blockbuster drugs,’ the patient perspective of digital health is rarely discussed, [and] it has even been reported that physicians are discouraging patients from using digital solutions,” wrote the authors.

Moreover, they noted that in the current state of digital health in PD, several initiatives and projects using wearable technology are mostly used by only clinicians, with just a few available to the general public.

Seeking to gauge what those with PD would want more from digital health, they reviewed available literature and found several key patient desires:

• actively managing the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition;
• tracking functionality and symptoms (motor and nonmotor) in relation to medications (types, doses, and timings), stress, sleep, exercise, and contextual factors;
• collaborating with their medical team in decisions on symptoms, problem areas, treatments, short- and long-term management; and
• finding information, knowledge, and social support.

A notable takeaway is the need for greater communication and education on the disease itself among patients with PD (PwP). So far, only 1 peer-reviewed academic work of 2 single-patient studies has explored patient self-tracking in PD. In the study findings, self-observation and symptom tracking was noted to help patients better understand PD and improve treatment, both with and without clinical support.

“Daily feedback to PwP of their data from wearable sensor technology has been shown to elicit positive effects on individual mobility compared to PwP wearing the sensors without feedback,” added the study authors.

So, what digital technologies are being investigated in PD?

As mentioned earlier, most wearable technologies are still not available for public use but nonetheless have shown promise. The Personal Kinetigraph (PKG), a device worn on the wrist, collects data on movements (tremor, bradykinesia, and dyskinesia) and provides reminders for medication intake. A recent study of physicians found that using the device—which PDP are unable to acquire directly—could improve patient dialogue, with patients saying that PKG could provide a valuable impact on their care.

Another device, called REMPARK, is a prototype version of a wearable device that aims to improve monitoring of PD ON and OFF states, in which motor and nonmotor symptoms are controlled and then reappear. Developed through an EU-funded project between 2011 and 2015, REMPARK consists of a sensor worn in a belt and a smartphone app that work to record the movement of PwP and provide cues to improve walking, as well as nudges to fill out questionnaires on nonmotor symptoms.

In a multicenter 5-day validation study, REMPARK was found to correctly detect ON/OFF states of patients, comparing data from the sensor with patient-reported ON/OFF states. This would allow clinicians to monitor PwP online; however, patients do not have access to the data generated.

In concluding, the researchers detailed several challenges that need to be addressed for digital health to reach its full potential in PD:

• the right of PwP to access their own data needs to be recognized,
• PwP should routinely receive personalized feedback based on their data, and
• active involvement of PwP as equal partners in digital health development needs to be the norm and, if necessary, mandated and/or incentivized.

“In the future it is to be hoped that patient involvement will increase substantially and in equal partnership with researchers and clinicians,” said the study authors.

Reference

Riggare S, Stamford J, Hägglund M. A long way to go: patient perspectives on digital health for Parkinson’s disease. J Parkinsons Dis. Published online February 27, 2021. doi:10.3233/JPD-202408