How tech is transforming care: 4 news items
C. Grace Juneau Whiting
? Storyteller & Strategist | CEO, Whiting Communications | Co-Founder, How We Care | Aging, Disability, & Caregiving Advocate | Resident Star Trek Expert ?? | Unstoppable Social Sector Unicorn ??
How We Care is a digital publication examining how we care for each other, our communities, society, and the world, published as a social impact project of Whiting Communications, LLC. Subscribe here.
HOW WE CARE \ Vol. 1 Iss. 1 \ September 2024
In this edition
New tech to help us move, speak, and play
Move over Robot Overlords, because recent news from the U.S. Food & Drug Administration and the National Institutes of Health indicate that technology can be used for good. Or, at least, regulated for good?
Starting this November, FDA will launch a new Digital Health Advisory Committee to “discuss total product lifecycle considerations” for medical devices that rely on generative AI. The Committee will advise the FDA on digital health technologies, related policies, and regulations — including the “unintended consequences” that could result from proposed policies. The roster of Committee attendees includes the usual suspects – academics, doctors, and associations — and some surprises, including an Associate Professor of Computer Science. Learn more and register for the telecast meeting which will take place on November 20 – 21.
This isn’t the only place that the FDA is looking at fancy new-fangled tech: last month, they updated the list of approved medical devices that use Augmented Reality (AR) and Virtual Reality (VR). While the pace of AR/VR device approval seems slower this year (just 6 approvals so far compared to 18 in 2023), these tools offer multiple applications. While most focus on improving physical movement and orthopedics, others support diagnosis and treatment (especially in radiology, ophthalmology, neurologics, and cardiovascular disciplines).
On the research side, NIH is taking a deep digital dive into the brain. Recent news highlighted research on using adaptive deep brain stimulation (DBS) to help people with Parkinson’s manage their motor symptoms. Conventional DBS doesn’t adapt to the normal fluctuation in brain activity, but researchers have found ways to apply machine learning to adjust stimulations in real-time.
Really want to get excited about this new application? Check out the awesome video with former pro-skateboarder Shawn Connolly on how adaptive DBS has changed his journey with Parkinson’s disease.
Finally, the New England Journal of Medicine released a new study on advancements in the brain-computer interface. You may recall this type of tech from watching interviews with the famous astrophysicist Stephen Hawking, who used an early version of this technology to communicate despite living with ALS. (Notably, Dr. Hawking’s artificial voice had an American accent, despite Dr. Hawking’s having been born and raised in Oxford, England).
After implanting microelectrodes in the brain, scientists found the system could decode 97% of words correctly within just 16 hours. People with ALS could use it to speak at 32 words per minute in their pre-ALS speaking voice. Talk about giving people with disabilities a voice — not just any voice, but their own.
Other tech trends to watch
‘Til debt do us part
The Consumer Financial Protection Bureau (CFPB) is shining a floodlight on issues with collecting and reporting medical debt. In August, CFPB closed its public comment period on a new proposal to ban medical bills from credit reports (potentially removing up to $49 billion from the credit reports of 15 million Americans).
Noteworthy to this proposal is the ongoing issue of how medical debt impacts spouses and other friends or family who may not be aware that they could inherit someone else’s debt. WorkMoney, a nonprofit in the financial security space, received over a thousand comments from its members about the consequences of medical debt.
Likewise, the National Consumer Law Center shared constituent perspectives, including one cancer advocate who noted that “some couples… divorce strictly for financial reasons — so that the sick spouse doesn’t take the whole family down – financially – with them.” The National Alliance for Caregiving, writing more broadly on the impact of medical debt to family caregivers, requested more consumer education.
Afterward, CFPB has highlighted the particular issue of surviving spouses and their vulnerabilities with respect to medical debt in a new blog published September 20. Jam-packed with data and charts to warm the heart of even the coldest policy wonk, they provide an excellent overview of a patchwork of state laws that impact surviving spouses. Pair it with the excellent?factsheet from the Women’s Institute for a Secure Retirement on the Rights of Surviving Spouses, and rest assured in the comforting glow that someone on the other end of Regulations.gov cares about these issues, too.
Caregivers get chronic diseases, too
It’s the start of Spooky Season, and if you need something frightening to pair with your candy corn and skeletons, the CDC’s Morbidity and Mortality Weekly Report (MMWR) has you covered. Its August 29th update published new statistics on changing health indicators for family caregivers. While it’s not as dire as Michael Myers lurking just outside your window, the news isn’t great.
Six core indicators worsened. Compared to 2015-16, caregivers in 2021-22 were more likely to report “frequent mental distress,” depression, asthma, obesity, and having any or multiple chronic conditions.
The good news is that caregivers of all ages are smoking less, moving more, finding health coverage, and having better access to doctors.
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Yet the additional strain that caregiving adds to an aging adult is still present — despite progress, caregivers are still more likely than non-caregivers to smoke. This is similar to other public health issues for caregivers, who may use tobacco, alcohol, and other substances to self-medicate from the pressures of caregiving. (See, for example, the fascinating analysis from Blue Cross Blue Shield of its caregiver-members.)
More and more, researchers and thought-leaders are increasingly couching family caregiving as a public health issue. While the Alzheimer’s and related dementia community has long discussed the impact of caregiving on public health, there seems to be an increasing call to consider unsupported caregiving as a risk to population health.
And at the end of August, the U.S. Surgeon General issued a public health advisory on parents’ mental health and well-being. SHRM notes that, in addition to new support for child care, Dow is offering employees Cariloop’s care coaching designed for caregivers of other family members. As with any scary situation, the more people united on the issue, the better.
Further Reading
Care conversations in the wild
The New York Times published a list of five books to make caregiving “a little more manageable.” (Don’t miss the additional recommendations in the comments.)
HHS released its Progress Report on the Federal Implementation of the National Strategy to Support Family Caregivers to Congress – noting progress since 2022.
Scientific American has partnered with Takeda Pharmaceuticals to highlight family caregiver stories and research as part of its Health Equity Heroes series.
Pop culture caring
Recent films, memes, and media to keep up your caregiving ‘rizz.
Film
Ezra (2024), an indie film starring Bobby Cannavale, Rose Byrne, and Robert De Niro as Ezra’s separated parents try to navigate his autism diagnosis and the generational impact of undiagnosed disease. Sure, there’s some kidnapping, several surprising cameos, and a somewhat saccharine take on parenting children with disabilities. But it’s a fascinating look at the challenges that caregiving can put on parents, their relationship and how our attitudes about disability impact how we care for others.
Art
The Mori Art Museum in Tokyo’s new exhibit focuses on the complex feelings we have about our relationship with our parents. The exhibit (named: “Louis Bourgeois: I have been to hell and back. And let me tell you, it was wonderful.”) reflects on the wide range of emotions that result from a complicated and traumatic childhood, including hope and fear, anxiety and calm, guilt and reparation, tension and release. With a showcase of over 100 works across three chapters of the artist’s life, the exhibit runs through January 2025.
Music
With over 288 million views on YouTube alone, the Benson Boone song “Beautiful Things” talks about one of the most challenging aspects of caring for anyone: balancing the joy of being with them with the fear that you’ll lose them. As he sings, “I’ve got peace, and I’ve got love, but I’m up at night thinkin’ I might just lose it all.”
Associate Professor and Associate Chair at University of North Carolina at Chapel Hill
1 个月Congrats, Grace! Look forward to reading!
That sounds like a meaningful initiative. Stories about family caregiving are super important. Can't wait to dive in C. Grace Juneau Whiting
CEO | Changemaker | Humanitarian
2 个月Bas Bloem Nako Nakatsuka, Ph.D. Doug Beynon Alexandra T. Greenhill, MD, Kathleen Ross
Physician CEO Innovator focused on 10x impact | Inspiring Thought Leader | Author and Speaker | TEDx | "AI in Clinical Medicine" book (published by Wiley)
2 个月This is a great round up! Very useful and interesting content. Especially liked the list of book on caregiving. I often recommend books as therapy to my patients (bibliotherapy) as the expert guidance and/or lived experience is so powerful - makes the experience more manageable and less lonely, adds perspective and encouragement.