Perspectives on the future of technologies in the care of Parkinson’s disease
We live in a digital world. Technology increasingly influences our individual activities, our choices, and our interactions with others – and is bound to dramatically change living with, and caring for, Parkinson’s disease. Two cornerstones of the integration of technology into the assessment and monitoring of Parkinson’s disease will be the electronic health records (EHRs) and the home-based mobile health technologies (MHTs), allowing the assessment and evaluation of our physiological state and of features associated with Parkinson’s.
EHRs will enable patients to collect and manage individual health data, including that obtained from the treating physicians and the allied health care teams. EHR owners may, in addition, upload their own data obtained from MHTs as related to health, fitness, mobility and nutrition. These EHRs of the future will enhance communication between users and clinics, doctors and other healthcare professionals, consolidate hospital- and practice-derived data and implement population health analytics to inform about disease risk and prevention in an individualized manner.
Every EHR user will also be able to upload “passive” data collected with individual MHTs. The most ubiquitous MHT is the smartphone, followed by smartwatches. Also, other available systems include sensors adhered to the arms or feet, or integrated into the shoes, as well as software analyzing keyboard typing. These MHTs can contain accelerometers, gyroscopes, magnetometers, heart rate monitors, galvanic skin resistors and barometers. Other examples are hearing aids and eyeglasses with integrated environmental detection systems or with microphones, which allow the analysis of speech commands. All these MHTs will enable (almost) continuous measurement of activities, mobility, fitness state and disease manifestations in the usual environment of the user – not the brief and artificial measurements captured at the clinic.
A major challenge is that MHTs are not yet endorsed to be used as clinical assessment of Parkinson’s by regulatory agencies or health care providers. Reasons include (i) motor and non-motor features of the disease are routinely captured with interviews and scales validated at a doctor`s practice, not the home environment, (ii) raw data coming from MHTs are meaningless without dedicated algorithms to give them value to users and clinicians, and (iii) gold standards (i.e., the point of reference against which other things are compared) for the validation (i.e., the confirmation that a thing is indeed measuring what it is intended to measure) of these devices are difficult to define. And for validating MHTs, it may be desirable to achieve low rather than high correlations with previously validated scales – if in fact the digital quantification is superior to the “analog” one. At the moment, none of the currently available data outputs generated by MHTs is capable of informing treatment-relevant severity profiles or provide cutoffs for clinical action, and therefore the experience is insufficient to justify their full integration.
We are convinced that these pitfalls and challenges will be adequately addressed by policy and research communities in due course. For example, the Movement Disorders Society Task Force on Technology is currently developing roadmaps for adopting these novel technologies for Parkinson’s. It will, however, also need substantial input coming from people living with Parkinson’s to eventually enable the anticipated improvement of care and disease management these novel technologies promise to deliver. This input can, in our view, be broken down into the following pieces:
Increase the use: Embracing of technologies by all stakeholders once concerns over privacy and autonomy are addressed in order to allow EHRs and MHTs to coordinate effective and individualized management of the disease.
Clear a pathway: Facilitation of regulatory channels to increase the application of MHTs in clinical trials and other research activities.
Coordinate among stakeholders: Increase the participation of people with Parkinson’s with researchers, industry and policy makers, a concept impressively illustrated by the integrated activities at the WPC 2019 in Kyoto. This congress positioned itself as a unique “melting pot” and interaction hub for people living with Parkinson’s and other stakeholders. These joint efforts are, in our view, crucial to develop useful digital parameters for monitoring and caring for Parkinson’s since data from MHTs and EHRs are means to an end but not the end themselves. The involvement of patient stakeholders is also supported by the Food and Drug Administration (FDA) and the European Medicines Agency (EMA).
Allow patient language: Patient Reported Outcome Measures (PROMs) are best suited for integration into studies and clinical routine management through their natural incorporation into MHTs and EHRs.
Address digital literacy gaps: Use of these technologies requires digital literacy and specific communication skills. People have to download, install and run apps as well as to maintain their own medical devices. They have to communicate digitally with others to perform defined tasks. People with Parkinson’s, and older and less “digitization-experienced” persons may be disadvantaged in a future world of care that includes digital technologies. Consequently, this digital divide must be bridged to enable a comprehensive integration of digital aspects of Parkinson’s care from the outset.
In summary, with the help of researchers, policy makers, industry and other stakeholders, people with Parkinson’s may soon be able to collect, interpret and manage their own digital health data with EHRs and MHTs. Given that all involved stakeholders manage to work closely together during this development process and that people with Parkinson’s contribute with their knowledge and enthusiasm, we anticipate a bright digital future for the management and care of this disease.
Walter Maetzler, MD presented at the 5th World Parkinson Congress in Kyoto, Japan. He is currently a professor at the Department of Neurology in the Christian-Albrechts-Universität Kiel and professor at the Kiel Campus of the University Hospital Schleswig-Holstein.
Alberto Espay, MD was a speaker and Program Committee member for the 4th World Parkinson Congress in Portland, Oregon. He is currently a professor and Chair of the James J and Joan A Gardner Family Center for Parkinson's Disease and Movement Disorders at the University of Cincinnati.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®