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If anyone here is involved in Alzheimer's, Parkinson's, dementia, or similar conditions, then I would love to hear from you. I'm creating open source accessibil

by jph 2y ago

If anyone here is involved in Alzheimer's, Parkinson's, dementia, or similar conditions, then I would love to hear from you. I'm creating open source accessibility software to help people who have these conditions, and their caregivers. Researchers are asking me about ways to add many kinds of telemetry to the mobile apps (such as Apple HealthKit) as well as alerting (such as "take your meds now") and more. The ending of the Alzheimer's data platform is blow for these researchers, and yet it turns out some of the data is really easy to get, if you can get an app on the person's phone or watch.

waihtis 2y ago
Have a close family member with Parkinsons. Can you elaborate on "open source accessibility software" and what that actually means
- jph 2y ago
  Yes, I develop BoldContacts, which is a mobile app to help you browse your contacts and connect with them. It features big bold buttons and fonts, and is useful for people who have Alzheimer's, Parkinson's, dementia, and cognitive/vision/motor disabilities. https://boldcontacts.org https://boldcontacts.org The app is deliberately small: the goal is to provide a free open source way to help people use their contacts more easily, such as to call their friends, family members, medical providers, and caregivers. The mission is much larger: to enable caregivers and researchers to extend people's quality of life; this is enabled by creating open source building blocks that care providers (e.g. hospitals, social services, assistive homes) can use to mix-and-match their own apps and content that can help people who are in more advanced stages of need.
Terretta 2y ago
Several early adopters at our firm have or know folks affected by this, would be happy to TestFlight. Most are on current iPhones or Watch, specifically for the relevant sensors. Speaking of accessibility, Apple's “Assistive Access” mode that makes the phone into big buttons removes the answer for "What is today?" from the home screen, which makes no sense. Do you know any way to get that back, or are you connected to anyone at Apple that can correct this weird oversight? (Before anyone asks, no, the calendar icon isn't live in this mode like it is normally, and shows the wrong day date instead, which is even worse.) It's also weird the blue (NEW) badge on app icons isn't tappable, only the middle of the icon is tappable. It's as though Apple never watched anyone with cognitive challenges use this mode. To others who may be interested, Assistive Access makes the phone safe for users without memory or judgment. For example, the device can be set to disallow send/reply unless recipient is in an allow list. More: https://support.apple.com/guide/assistive-access-iphone/welcome/ios https://support.apple.com/guide/assistive-access-iphone/welc...
- jph 2y ago
  Thank you, I'll email you. Apple's Assistive Access is a good step in the right direction IMHO. Yet as you describe there's a very strange mismatch between the software and actual users. Disability researchers who are advising me are 100% that accessibility software and hardware really must be be tried much more thoroughly with real world users in real world settings. And the researchers feel strongly that there's no one size fits all. The best approach (currently) that they want is a kit of open source pieces that the researchers can combine and also can tune, to try many more hypotheses quickly. It's a great area for FLOSS.

by jph 2y ago

waihtis 2y ago

Have a close family member with Parkinsons. Can you elaborate on "open source accessibility software" and what that actually means

jph 2y ago
Yes, I develop BoldContacts, which is a mobile app to help you browse your contacts and connect with them. It features big bold buttons and fonts, and is useful for people who have Alzheimer's, Parkinson's, dementia, and cognitive/vision/motor disabilities. https://boldcontacts.org https://boldcontacts.org The app is deliberately small: the goal is to provide a free open source way to help people use their contacts more easily, such as to call their friends, family members, medical providers, and caregivers. The mission is much larger: to enable caregivers and researchers to extend people's quality of life; this is enabled by creating open source building blocks that care providers (e.g. hospitals, social services, assistive homes) can use to mix-and-match their own apps and content that can help people who are in more advanced stages of need.

Terretta 2y ago

Several early adopters at our firm have or know folks affected by this, would be happy to TestFlight. Most are on current iPhones or Watch, specifically for the relevant sensors. Speaking of accessibility, Apple's “Assistive Access” mode that makes the phone into big buttons removes the answer for "What is today?" from the home screen, which makes no sense. Do you know any way to get that back, or are you connected to anyone at Apple that can correct this weird oversight? (Before anyone asks, no, the calendar icon isn't live in this mode like it is normally, and shows the wrong day date instead, which is even worse.) It's also weird the blue (NEW) badge on app icons isn't tappable, only the middle of the icon is tappable. It's as though Apple never watched anyone with cognitive challenges use this mode. To others who may be interested, Assistive Access makes the phone safe for users without memory or judgment. For example, the device can be set to disallow send/reply unless recipient is in an allow list. More: https://support.apple.com/guide/assistive-access-iphone/welcome/ios https://support.apple.com/guide/assistive-access-iphone/welc...

jph 2y ago
Thank you, I'll email you. Apple's Assistive Access is a good step in the right direction IMHO. Yet as you describe there's a very strange mismatch between the software and actual users. Disability researchers who are advising me are 100% that accessibility software and hardware really must be be tried much more thoroughly with real world users in real world settings. And the researchers feel strongly that there's no one size fits all. The best approach (currently) that they want is a kit of open source pieces that the researchers can combine and also can tune, to try many more hypotheses quickly. It's a great area for FLOSS.