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Our Research Advocates Weigh In

PDF Research Advocate Marilyn Phillips“Telehealth has potential to improve not only care, but also research. By enabling people to volunteer for trials remotely, it will save both researchers and individuals time and money.”— Marilyn Phillips, PDF Research Advocate, Charleston, SC

 

PDF Research Advocate Jay Phillips“Telehealth cannot fix our health system and it won’t cure anyone of PD. But it will enable more people to get the care they need and to participate in research. The potential impact on peoples' lives is enormous.” — Jay Phillips, PDF Research Advocate, Charleston, SC

 

Marilyn and Jay joined PDF at the Merinoff Symposium in 2013, educating professionals on the potential benefits of telehealth for Parkinson's. They have also helped PDF medical advisor, Christina Vaughan, M.D., of the Medical University of South Carolina, to recruit 20 people to her clinical study on telehealth in Parkinson's.

 

Telehealth by the Numbers

  • There are 3,500 sites around the US that offer telehealth in some capacity.*
  • More than 380,000 veterans received telehealth services from the VHA in 2011.
  • The US Department of Health and Human Services funds 14 resource centers that help providers to implement telehealth in rural and medically underserved areas.
  • The Patient-Centered Outcomes Research Institute is supporting The Johns Hopkins University with $1.7 million to study the use of telemedicine for people with PD in rural, remote and underserved areas.
  • The VETS Act of 2013 (H.R. 2001) would help veterans to receive telemedicine care instead of having to travel to a federally-owned facility. Ask your Representative to co-sponsor the act by visiting www.parkinsonsaction.org.

* Source: American Telemedicine Association

 


The Doctor Is In Ö Your Living Room?

Telehealth and the Future of Parkinson’s Care

TelehealthCould we be returning to the tradition of seeing our doctors at home? We might be, but in this more modern version, the doctor may very well pop up on your computer screen instead of at your front door.

This is the concept of telehealth. Also referred to as “virtual” office visits, it means being able to see your doctor and health care professionals remotely via your computer, your tablet or even your smartphone.

The idea of telehealth — pioneered in stroke and other disease communities — is coming up with increasing frequency in conversations at the Parkinson’s Disease Foundation (PDF). This is because of the benefits it can potentially provide to the PD community. For one thing, it may offer access to care — particularly to specialists and complementary care — in locations that are remote or poorly served by medical resources. For another, it may make it easier for people with PD to participate in clinical trials, which could speed up the development of new treatments.

Currently, a few institutions offer telehealth care for people with Parkinson’s. These include the Veterans Health Administration (VHA), the Medical University of
South Carolina, The Johns Hopkins University and the University of Rochester. From these programs, we have learned how to create new models of care and how to negotiate barriers to access, including insurance restrictions and the risk of privacy violations.

Potential Impact on Care and Research

So how does telehealth compare to conventional in-person medical care? Here are some of the ways.

Access to Care
Studies have shown that when people with Parkinson’s see a doctor specializing in movement disorders, their care and quality of life improve. Yet 40 percent of
people with PD not only do not see a specialist; they do not see a general neurologist.

How a Telehealth Appointment Works

One of the most exciting possibilities of telehealth is that it may increase the number of people with PD who are able to see a Parkinson’s specialist. This is hopeful news for people for whom seeing the nearest specialist may require several hours of driving. Then there are the people whose disability — whether due to Parkinson’s or another reason — is so advanced that leaving the home becomes difficult or even impossible.

Telehealth can bring specialist care to those groups. For example, The Johns Hopkins University has provided telehealth consultations to people with Parkinson’s in 11 countries and five states who had trouble getting access to a specialist. In theory, telehealth may similarly increase the number of people who have access to physical and speech therapy.

In addition, telehealth can save time, trouble and money. In one study (funded in part by PDF) that was published just last year, the authors found that a telehealth appointment, compared with a traditional doctor visit, saved people with PD, on average, 100 miles of travel and three hours of time.

Quality of Care
Are you skeptical about whether a virtual visit can provide the same level of care as a traditional appointment? The final returns are not yet in, but early studies have suggested that in very specific ways, the virtual visit may actually be more effective than seeing your doctor in person. For example, it can help your doctor to see your everyday environment. If you are prone to falls because of Parkinson’s, a doctor or therapist could help identify risk factors and suggest ways to solve them — for example, removing throw rugs. And if you are asked about the dosage of a medication,in your home you can actually grab the bottle and answer the question accurately.

Some studies have shown that during telehealth appointments, people are more relaxed, can communicate better with their doctors and can remember advice with greater accuracy. In one such study, in 2009, researchers at the University of Rochester demonstrated that when people with PD in nursing homes were given telehealth as an option, the quality of their care was high and they actually preferred telehealth visits to those at the doctor’s office.

This said, there are several concerns specific to the application of telehealth to Parkinson’s that will need to be resolved. One is how to handle the measurement of PD symptoms such as balance and rigidity. These two symptoms are harder to assess visually through a videoconference, and may need instead to be assessed via in-person visits. Because of this last point, it may be that telehealth is not a primary tool for a PD diagnosis. It may instead be an effective component of treatment and maintenance.

Research
Have you considered participating in a clinical trial but decided against it based on time or expense? You are not alone. In fact, many people tell us that they would like to participate in trials, but are held back by reasons similar to those listed above — it can be expensive and time-consuming to travel to a clinical trial. Unfortunately this shortage of participants leads to delays in new treatments for Parkinson’s.

Telehealth can offer a much easier way for people to participate in trials from home, which could in turn speed the development of new treatments.

Where It Stands

Virtual health care brings advantages, but also its share of challenges, which in turn may lead health care providers to hesitate before setting up telehealth in their practices. Here are some of these challenges:

Licensure
Most doctors are approved to practice medicine in one state only. But with some states in the US offering only one or two PD specialists, a person might want care from a doctor across state lines. Because obtaining multiple state licenses is an expensive and arduous process, this is rarely practical.

Insurance Reimbursement and Billing
Virtual visits change the nature of who gets paid for health care and how. For example, laws in 20 states require private insurers to cover telehealth in limited circumstances, and similar laws are pending in six other states. As to Medicaid, the program for low-income families, coverage of telehealth varies by state. And as to Medicare, the program for older persons and persons with disabilities, telehealth coverage is restricted to people who live within areas defined as rural or as “underserved by the medical community.” There are also limitations in regards to what’s covered; for example, telehealth appointments with physical therapists are not reimbursed through Medicare.

Technology
Various technologies have been developed to allow for telehealth videoconferencing. While they adhere to privacy laws, they still — as is the case for electronic health records — raise the potential of data breaches that could put your privacy at risk. Additionally, while the cost of basic videoconferencing technology is low, the process of managing IT facilities and administration can be costly, and this can raise problems for smaller medical practices.

Telehealth: The Future or the Now?

Now that you have a sense of how telehealth works and its potential benefits and challenges for the Parkinson’s community, you might be wondering: when will it be available in my community? For most readers, virtual visits are not yet an option. And for the foreseeable future, telehealth may be best for those people with Parkinson’s who are unable to access the best care without great difficulty, especially those in rural areas or whose disability prevents them from leaving home. Right now, it is important to be aware of telehealth, and if you believe it is important to see coverage of telehealth expanded, to share your opinion with your elected officials (see box inset). Telehealth is likely to be the wave of the future and another trend to monitor as we all look for ways to ensure the best care for people with Parkinson’s.

Back to Contents for Winter 2014 News & Review