The Expanding Role of Technology Within Healthcare for Parkinson’s Disease
Computers, smartphones, video — technology has become much more accessible and user-friendly and plays a big role in our everyday lives, from the ways we keep in touch to the ways we watch tv to the cars we drive (just to name a few). But technology and the virtual world we now live in can play a big role in our healthcare as well. There are many opportunities to advance clinical care, participate in clinical trials, and seek out Parkinson’s disease (PD) wellness opportunities. Many of these virtual initiatives were created in response to the COVID-19 pandemic and because of their success and popularity were continued even as the pandemic subsided. But as innovation continues, there are new options that can be explored as well.
How can virtual technology help people with Parkinson’s disease?
Telemedicine
Telemedicine is a general term that describes any type of electronic communication that provides healthcare without an in-person visit, such as a video visit or telephone consultation.
Telemedicine has many advantages for the PD community including:
- Many people with PD live in areas with few or no movement disorders specialists, or even neurologists, as a result they either see no specialist or must drive hours to receive specialized care. Telemedicine allows these individuals to get access to expert PD doctors from afar.
- As PD progresses, people may have more severe issues with cognition and movement or have a care partner who is older and has difficulty with mobility or driving. Telemedicine allows access to health care without any of the hurdles of transportation to the facility.
- A virtual visit allows the practitioner to have a sense of the person’s home environment which is not possible with an in-person visit.
There are, of course, persistent disadvantages to telemedicine:
- Telemedicine requires a good internet connection and the computer skills required to connect to the doctor’s office at the correct time. Many doctor’s offices have optimized their telemedicine platforms and the software is generally very easy to use and medical office staff will often help you learn how to use it prior to your first visit. However, there are still obstacles, particularly for people with cognitive difficulties.
- There are elements of the patient-doctor relationship that are hard to capture without in-person contact and doctors may be more reluctant to make major changes in a person’s care plan without an in-person visit.
Insurance coverage for telemedicine
During the COVID pandemic, the U.S. Department of Health and Human Services (which is in charge of Medicare) took a range of administrative steps to allow for telemedicine visits to occur on a wide scale (for example, allowing Medicare to pay for telemedicine visits at a rate that is on par with an in-person visit). Some of these telehealth flexibilities have been made permanent while others are temporary.
Permanent flexibilities include on-par Medicare payment for mental health services through telemedicine. Temporary flexibilities have been extended to Dec 31, 2024, and include receipt of general telehealth services in the home. If you do not have Medicare, check with your commercial insurance provider about their rules for paying for telemedicine visits.
Your own doctor may be offering visits via telemedicine. If this is the case and you still haven’t tried a virtual visit, now may be the time to check it out.
Telemedicine via Synapticure
A new telemedicine option that has recently become available is the online provider Synapticure, a company that provides personalized, proactive care to patients and caregivers with Parkinson’s disease and Amyotrophic Lateral Sclerosis (ALS).
Here is how Synapticure works:
- When you enroll in Synapticure, you are paired up with a care coordinator (who is typically a registered nurse or social worker), who learns about your needs and assembles your past medical records for review.
- Next, you meet virtually with a Synapticure movement disorders specialist who conducts a virtual examination, develops a care plan, and refers you to any necessary services including physical therapy, occupational therapy, speech therapy, genetic testing, and clinical trials. A care team will work to coordinate these visits and get them, as well as any newly prescribed medications, paid for by insurance if possible.
Synapticure encourages each of their patients to maintain an ongoing relationship with a “brick and mortar” health care institution and will communicate with that team to coordinate your care. In this way, someone who does not have access to a movement disorders specialist can get that expertise from Synapticure, along with access to an in-person physician as well. Synapticure takes Medicare and many commercial insurances but may not take your insurance provider, so you will need to ask this before seeking care with Synapticure.
If you are struggling to find comprehensive PD care in your area, you may want to see if Synapticure is able to assist you.
Remote monitoring of symptoms
Virtual systems have been developed to improve monitoring of PD symptoms. Patients tend to see their doctors for relatively brief periods and doctors adjust medications primarily based on patient and care partner anecdotal reports. Two commercially available systems, which are available by prescription, allow for doctors to monitor symptoms for longer stretches at home to make more informed medical decisions based on actual patient data, not personal recollections.
PKG®: tracking symptoms and enhancing medication management
One system is known as PKG®. A person with PD wears a watch-like sensor continuously at home, which records their movements and reminds the wearer to take their medication doses. At the end of the recording period, the data is uploaded and processed. A report is generated and shared with the provider, assessing slowness of movement, dyskinesia, and tremor throughout the day, and correlating these symptoms to the self-reported timing of medication doses. The report also provides a record of sleep and immobility throughout the day and night.
Kinesia suite of systems
Great Lakes Technologies has created three systems for remote monitoring of PD symptoms – Kinesia One, Kinesia 360, and Kinesia U. The newest system is Kinesia U which consists of a mobile app that people with PD use on their smartwatch and smartphone. Through movement captured by the smartwatch, the app objectively evaluates tremor, slowness, and dyskinesia in response to medication and exercise. Reports are provided to the user which can be shared electronically with their providers without having to come into the office.
Optimize Parkinson’s management with APDA’s Symptom Tracker app
APDA’s Symptom Tracker app helps you easily and accurately keep track of your motor and non-motor symptoms and then creates reports that you can share with you care team, allowing you to consult more productively with your doctor. At a doctor visit, it can be hard to recall how certain symptoms have (or have not) bothered you since your last appointment, and the APDA Symptom Tracker app can help you provide an accurate history and valuable insights into the progression of your condition. It creates a helpful list of suggested questions to ask your doctor (based on the symptoms you’re experiencing) and also features a medication tracker, educational resources, and more.
Remote deep brain stimulation programming
Companies that make deep brain stimulation equipment have also evolved in recent years. Abbott developed a system called Neurosphere Digital Care platform™, a remote programming option that allows clinicians to connect with patients through a wireless network and perform DBS programming through a telemedicine appointment.
Clinical trials
The COVID-19 pandemic also expanded the concept of virtual clinical trials. Now there are clinical trials that you can participate in which require a minimal number (or even zero) in-person visits. This makes participation in clinical trials much easier and enables more people to get involved.
The Trial of Zoledronic Acid (TOPAZ) and Parkinson’s Study is an ongoing clinical trial seeking participants to study the use of Zolendronate in the prevention of fractures in people with PD. Zolendronate is a medication already approved by the Food and Drug Administration for the prevention of fractures in people with osteoporosis. The TOPAZ study is investigating the role of this medication in preventing fractures in people with PD. Enrollment is online and participants receive a study kit by mail. A research nurse makes a one-time visit to the home. Follow-up visits are conducted via email or phone. To learn more about this study, visit the study website.
Patient surveys are an important way for researchers to collect information about people with PD. You can view a selection of these on APDA’s clinical trials webpage.
Virtual educational opportunities and wellness classes
There continues to be a plethora of live and recorded video content that you can access to help you navigate life with PD, as well as many ways to engage with others with PD. APDA offers many virtual programs, free of charge, that you can access from anywhere you have an internet connection. Programs include exercise and movement classes, singing programs, educational sessions and webinars, and much more. You can view our Virtual Events Calendar to see what’s coming up soon.
A few of APDA’s virtual educational opportunities:
- APDA Virtual Parkinson’s Conference – Take a look at insightful and informative presentations featuring more than 26 speakers who participated in 16 educational sessions and panel discussions over two days.
- Let’s Keep Moving With APDA Webinar Series – Hosted by physical therapists who provide tips, research, and news on staying active and exercising, including episodes on balance, gait issues, exercising safely at home, and much more.
- Dr. Gilbert Hosts Webinar Series – In this monthly broadcast, APDA’s Chief Scientific Officer hosts exciting experts to talk about popular PD topics; each episode features a live Q+A session.
Exercise and wellness programs include:
- Fitness and movement classes (tai chi, yoga, dance, seated exercise, and more)
- Singing classes
- Art therapy (Note: APDA will offer a virtual session of our signature Connecting Through Art program on September 21. The program is free and art supplies will be provided at no cost to participants. Registration is required.)
Online Parkinson’s disease support groups
APDA developed a signature program called Parkinson’s Roadmap for Education and Support ServicesTM (PRESSTM) – an eight-week support series with tailored content to address the psychosocial needs of those who have been diagnosed with PD within the last five years. Originally created as an in-person program, APDA now also hosts virtual PRESS programs! Each PRESS support group is facilitated by a credentialed psychosocial healthcare professional and provides a structured platform for people to share their experiences, feelings, and strategies for coping with the disease. (NOTE: a new virtual PRESS program will begin on October 9, 2023. If you are interested in learning more, please contact programs@apdparkinson.org for more information.)
Virtual support groups for people with PD as well as care partners who do not meet criteria for the PRESS program are also available. If you are interested in joining a virtual PD support program, contact your local Chapter or Information and Referral Center or programs@apdaparkinson.org.
Another way to connect with other people with PD is through an online discussion forum hosted collaboratively by Smart Patients and APDA. You can post a question that you have on your mind and hear the perspectives of others who have similar challenges. You can also respond to the comments of others. It is a great way to get new ideas to improve your quality of life.
Tips and Takeaways
- The virtual world offers many opportunities to advance clinical care, participate in clinical trials, and seek out Parkinson’s disease (PD) wellness opportunities.
- Telemedicine through your own movement disorders neurologist or via Synapticure, may be able to provide you with virtual comprehensive PD care.
- Certain clinical trials such as TOPAZ are conducted almost completely remotely.
- People with PD can virtually connect with others through educational programming, wellness programming, and support groups.