Title: At-Home Testing Tools for Alzheimer's, Parkinson's, and Other
Neurodegenerative Diseases

Description: At-home testing tools may aid early detection of
neurodegenerative diseases like Alzheimer's and Parkinson's, and be more
cost effective for patients. In a new report, a Science and Tech
Spotlight, we looked at the status of this at-home technology and some
of the challenges it faces. Joining us to tell us more is GAO's Karen
Howard, an expert on technology and health care.

Related work: GAO-24-107306, Science & Tech Spotlight: At-Home Tools to
Diagnose Alzheimer's, Parkinson's, and Related Diseases

Released: March 2024

{Music}

[Karen Howard:] Wearing a sensor or taking a test that can gather data
over time, there's more chance of catching these symptoms in the early
stages when they're so sporadic.

[Holly Hobbs:] Hi and welcome to GAO's Watchdog Report. Your source for
fact-based, nonpartisan news and information from the U.S. Government
Accountability Office. I'm your host, Holly Hobbs. Early detection of
neurodegenerative diseases like Alzheimer's and Parkinson's can help
health care providers treat patients before the onset of symptoms and
slow the disease's progress. At-home testing tools may aid early
detection efforts and be more cost effective for patients. In a new
report, a Science & Tech Spotlight, we looked at the status of this
at-home technology and some of the challenges it faces. Joining us to
tell us more is GAO's Karen Howard, an expert on technology and health
care. Thanks for joining us.

[Karen Howard:] It's a pleasure to be here.

[Holly Hobbs:] So Karen, how do these at-home testing tools work, and
are there any currently available on the market? 

[Karen Howard:] Well, there are two categories of these tools. The first
category are wearable sensors. So this might be something that somebody
clips onto a belt or wears on their wrist. Maybe it's a smartphone app
and they carry the smartphone in their pocket. These sensors detect how
a person moves. How are they walking? What's their posture? Are they
making any unexpected movements with their hands or their arms, for
example. The second category are cognitive tests. And these could be
paper and pencil tests, or they could be computer based. But they're
designed to check a person's memory, their reasoning, those kinds of
thinking activities. They might show a person a picture of a room full
of objects and let them study it for a minute, then take the picture
away and ask the person to recall as many of those objects as possible.

[Holly Hobbs:] And are these considered accurate?

[Karen Howard:] We do know that when these tools are used in a clinical
setting, that they are very accurate and effective in helping to make a
diagnosis. But we don't know as much about how well they work in the
at-home setting. So, research is still underway to figure out how
effective and reliable are these tools when there's not a medical
professional present when somebody is just using them at-home.

[Holly Hobbs:] Is there something that at-home tools can do that a
doctor's visit wouldn't?

[Karen Howard:] The main advantage really is the possibility of early
detection. So because somebody is wearing them all the time and they're
gathering data over an extended period of time, they can make it much
easier to detect a disease at an earlier stage. Something like
Alzheimer's or Parkinson's, often in the early stages, the symptoms are
very subtle. They're very minor tremors, maybe. A person isn't certain
they've even been experiencing these tremors. Or, perhaps the symptoms
are sporadic--they might have symptoms one morning and then they don't
have any symptoms for several more days. With those kinds of symptoms
that can be very hard to pick them up in a doctor's office. Maybe when
you're at your appointment, you're not having any symptoms or maybe
they're so subtle that the doctor can't see them, or you're having
trouble describing what they feel like. So by wearing a sensor or taking
a test that can gather data over time, there's more chance of catching
these symptoms in the early stages when they're so sporadic or possibly
very subtle.

[Holly Hobbs:] Sounds like it's not just early detection, it's more
complete detection. Are there other benefits to this technology?

[Karen Howard:] One of the big ones, is the convenience for the patient.
If you can imagine thinking you might have something wrong, but you go
to the doctor, they don't see anything. You come back the next week
again, you're going back and forth, back and forth for appointments. And
it can be expensive to go to the doctor frequently to try to catch a
moment when the doctor can see these symptoms in action. So, the
convenience is really huge. And the second possible benefit is that
these tools are very comfortable for a patient. They're not as
frightening as some of the tools that might be used in a clinical
setting--such as a brain scan, that can be a frightening tool for a
patient. So this can be a nice early-stage tool that's a little more
comfortable and much more convenient for the patient. 

[Holly Hobbs:] I think you said that these devices, these wearable
devices, they aren't just collecting data, they're potentially sharing
them with a patient's health care provider. Does that raise any concerns
about privacy or data breaches, anything like that?

[Karen Howard:] It definitely does, Holly. Any time we're collecting, or
storing, or sharing patient health information, we need to have a
concern about privacy issues. As we know, data breaches are fairly
common, unfortunately. They can happen at any time. And that can share a
lot of sensitive information with somebody who was never intended to
have access to the data. In addition, data can legally be shared and
sold if some of the identifying information is stripped out. So if we're
talking about my medical data, for example, if they remove my name and
my birth date and a few of those pieces of identifying information, then
they can legally sell my health data or share it with another entity.
But we know that data mining techniques now are so advanced that those
data, even though we say they're de-identified, they can be rematched to
me or to another person. So we do have a lot of concerns about that kind
of data sharing as well.

[Holly Hobbs:] There are quite a lot of medical devices on the market,
things like heart monitors or blood pressure gauges. How are these
devices tested or approved for use? Who's responsible for that?

[Karen Howard:] That's the responsibility of the Food and Drug
Administration. FDA reviews every medical device before it goes on the
market. And this includes not only the device itself, like a sensor, for
example, you might clip on to your belt, but any software that's being
used, whether that's being used to give a cognitive test or whether it's
being used to analyze the data that the sensor is collecting. And FDA's
job is to determine whether the device is safe and whether it's
effective for the purpose it's being marketed for. 

{MUSIC}

[Holly Hobbs:] Karen said that at-home diagnostic tools could make it
easier and less expensive to detect diseases like Alzheimer's. But these
tools are not widely available and there are concerns about patient
privacy. So Karen if these tools have so much promise, why aren't more
of them available yet?

[Karen Howard:] This idea that we can do some of these things at-home
where it's easier, where it's more convenient, and potentially where it
might even be more effective--that's a fairly new concept. So
researchers are still looking into the effectiveness and the reliability
of tools in this at-home setting. When these are more widely available
on the market. It's possible that some people won't be able to access
them as fully as we would like. This might happen particularly with a
computer-based tool, like a memory test. If somebody doesn't have good
broadband access at their home or perhaps they're just not as
comfortable taking this kind of a test on a computer.

[Holly Hobbs:] And last question--what's the bottom line of this report?

[Karen Howard:] At-home tools show a lot of promise for helping doctors
diagnose these diseases like Alzheimer's and Parkinson's at earlier
stages and more accurately. But we do need additional testing to
determine how well these tools work in the at-home setting. And we also
need to ensure that we can protect patient privacy.

[Holly Hobbs:] That was Karen Howard talking about our new Spotlight on
at-home diagnostic tools. Thanks for your time, Karen.

[Karen Howard:] Thank you for the opportunity, Holly.

[Holly Hobbs:] And thank you for listening to the Watchdog Report. To
hear more podcasts, subscribe to us on Apple Podcasts, Spotify, or
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