Mobile Health Tech Must Be Integrated Into Parkinson Disease Care, MDS Task Force Says

Alberto Espay, MD, MSc

According to the Movement Disorder Society Task Force on Technology, the development and implementation of mobile health technology into routine use in the care of Parkinson disease is now necessary, and the group has laid out a roadmap to do so.¹

“The improvements in the sophistication, versatility, and wearability of these technologies have reached a state of maturity that is adequate for the collection of patient-relevant data,” the group, led by Alberto Espay, MD, MSc, from the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders at the University of Cincinnati, wrote.

The Task Force made 4 recommendations for the integration of mobile health technologies into daily practice for it to have the most impact, with the following as their main points:

• These technologies must target deficits in practice which are relevant to the patients affected.
• These technologies must be derived from a single or a combination of devices that deliver an acceptable benefit-to-burden ratio for patients while also yielding clinically useful information.
• These technologies must be fully combined and harmonized for the standards of patient management, to deliver individualized data to patients, caregivers, and clinicians.
• These technologies must be approved by regulators, integrated into digital health systems, and uniformly adopted by health care organizations.

In a related editorial from the Task Force, lead author Joaquin A. Vizcarra, MD, from the Gardner Family Center for Parkinson’s Disease and Movement Disorders at the University of Cincinnati, and colleagues noted that Parkinson disease electronic diary/tracker interfaces are an example of the types of tech which should be integrated into regular clinical care.²

“The highly dynamic and user-friendly technological advances of recent years enable the development and validation of an accepted e-Diary/tracker that simultaneously assesses motor fluctuations and nonmotor fluctuations and uses action-dependent and action-independent end points for clinical management and research effort,” they wrote.

Vizcarra et al. noted that e-Diaries can be both patient-friendly and intuitive while remaining capable of providing real-time feedback to the patient and clinician, which they suggested would promote widespread use and long-term adherence. “The time has come to move beyond the simplistic dualism of ‘ON’ and ‘OFF’ states of paper diaries and reconfigure this important source of clinical information for care and research,” they concluded.²

In order to transition these types of technology into regular Parkinson care, Espay and colleagues outlined the processes which need to be completed. They noted that there are prerequisites to the testing of these technologies, which in turn will lead to the proper outputs and prepare them for clinical use.¹

The group wrote that in order to determine which patient-defined targets and outcomes would be most adaptable to individualized patient needs, “data derived from surveys of more than 10,000 patients through the Michael J. Fox Foundation’s Fox Insight project have been identified.”

They noted that the pioneering work in this specific group of patient data identified the questions “what bothers you the most about your [Parkinson disease]?” and “in what way does this problem bother you by affecting your daily functioning?” and with natural language processing detailed 4 motor (tremor, rigidity, bradykinesia, postural instability) and 6 nonmotor (sleep, fatigue, cognition, mood, pain, constipation) symptoms as patient-relevant.

In relation to the selection of software and hardware combinations for data collection, the Movement Disorder Society Task Force recommended that it must, in real time, address user and other stakeholder needs such as comfort, compliance-friendly requirements, and research-grade sensitivity and specificity, as well as the technical aspects to allow for convenient use such as battery life, data storage, and compatibility.

“Also, if the monitoring period is to be over years and/or patients have to wear more than one device, periodic monitoring may be more successful than continuous assessment,” they wrote. “Although continuous monitoring appears attractive, systematic evaluation of the benefits and trade-offs of longer (e.g., 1 month, 6 months) versus shorter (e.g., 1 day, 1 week) durations have not yet been determined.”

The Task Force admitted that the lack of a standard, interoperable and joint platform for health care data poses a serious challenge to the adoption and integration of these technologies. With that, they presented a number of recommendations for what could become a “centralized, open-source, web-based structure where mobile health technologies with different technology standards and requirements can be integrated.” The proof-of-concept effort of the Task Force, they noted, is represented by the aforementioned e-Diary/tracker, which could, they wrote, answer a pair of critical questions:

1. Can a central body invest the necessary resources for the development, maintenance, and administration an interoperable open-source, security compliant platform for the integration mobile health technologies?
2. Should the Movement Disorder Society develop criteria for existing and emerging applications as “clinically meaningful” and “sufficiently accurate” about which sensitivity, specificity, and diagnostic accuracy cannot be ascertained given the problems with using current clinician-rated rating scales as the gold standard?

The group also recognized a number of challenges to adopting this technology into practice, most notably being the change in behavior which would be necessary from both a patient and physician perspective. Additionally, they recognized the need for a sustainable financial model, thus placing an onus on societies like the Movement Disorder Society to take them on. As well, they identified the challenge of seamlessly coupling the outcomes of mobile health technologies to the existing information technology infrastructure at hospitals.

Ultimately, Espay et al. concluded that “this collaborative endeavor will encourage the development of integrated, multichannel systems that can achieve more sophisticated characterization of patients’ function, better tailoring of symptomatic therapy, greater patient engagement and self-assessment by patients, and overall improved health care outcomes.”

The entire roadmap can be accessed in Movement Disorders.

REFERENCES

1. Espay AJ, Hausdorff JM, Sánchez-Ferro Á. A roadmap for implementation of patient-centered digital outcome measures in Parkinson’s disease obtained using mobile health technologies. Movement Disord. Published online March 22, 2019. doi: 10.1002/mds.27671.

2. Vizcarra JA, Sánchez-Ferro Á, Maetzler W, et al. The Parkinson’s disease e-diary: developing a clinical and research tool for the digital age. Movement Disord. Published online March 22, 2019. doi: 10.1002/mds.27673.