The book Digital Outcasts: Moving Technology Forward without Leaving People Behind, written by Kel Smith and released in April 2013, addresses key trends in technology and their relevance to forgotten populations.
The manuscript for Digital Outcasts has been delivered. As of today, I can’t tell you whether it’s any good. I think it probably is, but I’m too close to be the most objective judge of quality. What I can tell you is that the book is now in production and will soon be available for pre-order on the Elsevier website. So that’s pretty exciting.
The book will be available in print and e-book formats in June 2013. In advance of that, I’ll be conducting a mini book tour of speaking engagements related to the book’s themes. Appearances at SXSW 2013 in Austin and CSUN 2013 in San Diego are already on the calendar. I’ll post more dates as they are confirmed.
Because I’ve been devoting most of my effort to writing and editing the actual book, I’ve let a number of interesting developments slip by. Two in particular are worthy of mention:
Disability and Virtual WorldsAn ARC-funded project exploring isolation and illness suggests that online virtual worlds (three-dimensional multi-user environments) can provide support for people living with disabilities.
Accessibility of these environments, however, remains an obstacle. I’ve devoted an entire chapter in the book to the topic, exploring the use of virtual environments and communities of practice in the disability sector. The story appears at Phys.Org and touches upon themes I’ve covered in presentations and articles since 2009.
Employment Advantages of AutismThe New York Times Magazine reports on staffing firms that specialize in placing candidates with autism in jobs where they can be successful.
Employers are gradually recognizing that workers with unusually strong attention to detail and concentration can be an asset in certain occupations, such as quality assurance. Among the examples cited are Specialisterne, a Danish company that gets mention in the book.
I’m in the final stages of wrapping up the manuscript. I’ve read that the last 10% of an effort requires as much work as the first 90%, and that has certainly turned out to be the case. Fortunately, I have a great support team of editors and reviewers providing critical input as I shape the content into something coherent.
Among those is the wonderful Glenda Watson Hyatt, whose remarkable insights can be found on her Do It Myself Blog. She was kind enough to review a chapter of Digital Outcasts that mentions her, so I was exceptionally pleased to find out she wrote a few nice words on her blog. She also provided an interesting account of why technology alone doesn’t account for the nuances of conversation:
It’s not that simple; using a communication device during face-to-face communication, especially in a group situation, adds another layer of complexity. When an individual needs to tap out a response on a device while the conversation continues around her means the time-delayed response appears disjointed, even inappropriate, in the flow of the conversation.
Well said. Glenda’s book is entitled I’ll Do It Myself and it’s available in multiple formats, including Kindle and large print editions.
Since May of 2012, the book has received a decent amount of advance press due to various speaking engagements. With that, though, comes the perfectly reasonable and necessary demand to back up claims with factual information.
One particular area of skepticism has been the source material for the data point that home healthcare professionals drive nearly 5 billion miles per year, more than twice that of courier service UPS. This is where an author gets nervous, even with a team of technical and editorial reviewers working behind the scenes. There’s always a nagging tendency that incomplete or inaccurate fact-checking has resulted in gross generalizations, just for the sake of proving a point. Or that the research has not been as thorough as it should have been, because the numbers fit too neatly into a circular argument.
Such might be the case with statistics around the driving habits of home care workers, which includes nurses, occupational therapists, physical therapists, home care aides, nuns and volunteers. Their collective mission is to serve the “homebound patient,” those who are chronically ill, elderly, disabled and undergoing long- or short-term rehabilitation. The homebound patient population numbers 12 million people who are confined to the home and cannot leave without assistance.
Statistics from a 2006 National Association for Home Care & Hospice (NAHC) survey were based on Federally-mandated Medicare cost reports, which indicated 4.8 million miles had been driven across all fifty States. According to the NAHC, 4,786,052,493 miles were driven to cover 428,676,938 visits to critically ill homebound patients. Nurses and therapists in North Carolina alone drove over 232 million miles covering 15 million visits.
That said, it’s easy to glance at these figures with cynicism and think, “Well, of course. The NACH is looking to procure more funding, so they’re bumping up the statistics in order to elevate the urgency of their profession.” And that would be a fair comment upon which to pressure-test the data. After all, the Bureau of Labor Statistics 2010 Occupational Outlook Handbook only indicates 198,000 physical therapists and 108,000 occupational therapists currently working, and not all of them are driving.
In fact, many OT/PT professionals work in hospitals and facilities where patients come to them. So if we round up those two figures to, say, a combined 500,000 just for the sake of argument, we’re stil making a very generous assumption. If we then assume that a mere 20% of PT/OT professionals are actually driving, we have to conclude that a fifth of the PT/OT workforce is driving 10,000 miles a week or 2000 miles a day. And that just isn’t logical.
However, the NAHC survey is not limited to PT/OT professionals. Remember that this covers a wider swath of home care aides, including volunteer workers. According to the same 2010 Bureau of Labor Statistics report, there were 1,878,700 jobs in home care nursing with an expected growth rate of 70%.
So even if we assume that the same 20% of those 1.8 million workers are doing a bulk of the driving (remember, these are home care professionals), the result is a much more realistic 13,307 miles driven a year. Factoring a two-week vacation, that’s only 266 miles a week or 53 miles a day. That’s a standard commute for most people, and I’ve intentionally excluded 80% just to make the comparison fair.
A quick glance at the National Association of Social Workers introduction to hospice and palliative care reveals that “a great deal of driving to visit clients and some off-hours emergency coverage may be required.” Further insight can be found in a 2008 Wall Street Journal, “Gas Price’s Unlikely Victims,” where the toll of fuel costs has curtailed not only home health but also food delivery and other services for homebound patients.
It’s not only about the numbers; it’s also the experience of the PT/OT worker. One therapist told me, “I just assume that if I don’t see a patient everyday, then he’s going to get worse. Problem is, I can’t be at his home every day because I have another patient 140 miles in the opposite direction.” Such isolated comments expose the pain point behind the numbers, one that might be alleviated through digital means if devices were made available via reimbursement subsidies or accountable care plans.
The point is clear: people who are confined to their homes due to illness, injury or disability rely on a healthcare infrastructure whose services are dependent upon the automobile. The financial or logistical inaccessibility of remote monitoring technology threatens to marginalize a patient population who could most benefit. Lacking a self-supported model of care or the means to implement it, home health professionals are left to take up the slack, and the only way to do that is to get in the car and drive.
I have not posted here in quite some time because I’ve been writing writing writing. The manuscript is due to the publisher on December 3, 2012, and so far we’re pretty much on schedule. I have an amazing team of reviewers including Karen Mardahl, Jessica Ivins, Det Ansinn of BrickSimple and Jared Smith of WebAIM. Special thanks go to Jess and Karen, especially Karen who has been very tough but tremendously fair and insightful. Jennifer Ann Bridgens is helping me ensure that the overall structure is solid. If the book doesn’t stink, you can thank these people.
In collaboration with the American Public Health Association and the Center for Health Literacy, I’ll be speaking at the third annual Plain Talk in Complex Times health communication conference. It runs September 6 and 7, 2012 at the Renaissance Arlington Capital View Hotel near Washington DC. This conference is ideal for public health professionals, educators, medical practitioners, community advocates, writers, designers, translators, and anyone else who must communicate effectively with healthcare consumers.
They asked me to make a little video promoting my talk, so here it is:
During my engagements over the past two years, I’d say the “ah-ha!” comes while I’m discussing the importance of remote patient monitoring (RPM) for disabled populations. I usually start by going into some detail about patients with long-term illness or injury, who are unable to leave the house and thus rely on the attention of traveling nurses. I then mention the daily challenges of motivation and interest. I describe the tendency among homebound patients to prematurely cease their therapy exercises, because they erroneously believe that personal improvement has been made.
Or I simply reveal my favorite quote from an old college friend: “We live in a high-tech, low-touch society.”
A Problem of Access
I should provide a little context. Remote care can be a serious barrier for patients with brain injuries, vision/optic nerve reactions, multiple sclerosis, cerebral palsy, stroke and muscular dystrophy. In some cases, just getting to a facility involves a great deal of effort and coordination. Home care nurses are employed to look after such cases with the assigned task of getting their patients “unhomebound” as quickly as possible.
Patients live all over the country and nurses can’t be everywhere all the time. That’s why remote patient monitoring (RPM) technologies are of such interest to the medical community. The idea is that iPhone apps and telephony products allow for the same quality of care with fewer in-house visits. For a nursing population that drives twice as many miles annually as UPS, that’s quite an impressive benefit.
There’s a problem, though. For all the wonderful technology that’s out there, much of it is inaccessible from the standpoint of cost, availability or awareness. Mobile apps and devices continue to proliferate, yet 28% of home health patients return to the hospital due to a lack of follow-up care. Even worse, medical non-adherence is the fourth-leading cause of death in the United States.
Let’s go back to that old college friend. She is a healthcare professional who works with homebound patients. We were discussing this when she mentioned that wonderful quote by Nedra Gillette, Director of Research Resources for the American Occupational Therapy Association: “We live in a high-tech, low-touch society,” which perfectly crystallizes the RPM dilemma.
Hearing this quote, for me, defined a personal “ah-ha!” moment when everything suddenly clicked. It became very clear that the problem with RPM mobile apps and devices isn’t merely a question of capability. It’s how the devices are implemented and whether the benefits can be easily distributed among health providers, reimbursement agents and patient communities — from both clinical and financial perspectives.
The early thinking on RPM was that automating as much as possible would benefit both patients and health care providers. Investors have certainly noticed — AT&T last month announced a partnership with Valued Relationships Inc. to deliver an RPM service targeted for physician practices, hospitals and payers. In fact, the RPM industry is expected to hit $295 million by 2015, with such emerging markets as China and India expected to participate in the market’s expansion:
Increases in chronic disease cases and the elderly population, in addition to technology innovations, are seen as reasons why the patient monitoring market will continue to experience strong growth on a global scale. GBI predicts that market to grow at a compound annual growth rate (CAGR) of 4 percent per year. China and India are expected to be “potentially lucrative markets” for growth due to their “huge patient bases and … under-served” populations.
One of the lessons learned is that iPhone apps alone won’t predict outcomes, improve care practices, or make people well. Behavior can only be modified through consistent and productive feedback. Technology is simply a means to better track and understand that behavior, so perhaps the solution is in better alignment of technological devices with everyday life.
iPads From the VA, Computers in Your ClothesA number of recent developments point to a rosier outlook. One is the decision by the Department of Veterans Affairs (VA) to give pre-loaded iPads to veterans to help them communicate better with their physicians. The “Clinic-in-Hand” pilot program is designed to improve contact points between doctors and patients, using special apps that monitor heart rates, blood pressure and other vital signs. The caregivers can securely track their patients’ progress and intervene when necessary, with full access to administrative tools.
Another development is the creation of wearable computing devices that operate as health monitoring tools. Sonny Vu is an entrepreneur who runs a company called Misfit Wearables, which places wearable sensors in clothing and everyday objects to unobtrusively track health data. Vu sees his company as the next evolution of RPM, and he might be right:
Mobile health devices and software could change medicine profoundly, allowing people to continuously monitor vital signs and better track and modify behavior. That’s important because chronic diseases like obesity and diabetes are on the rise. “We’re seeing an infusion of mobile technologies into people’s lives,” says Susannah Fox, who studies technology and health care for the Pew Internet & American Life Project. “And we’re seeing a very rainy forecast in terms of people’s health.”
The idea of smart textiles is not new (look at what fiber students at the Maryland Institute College of Art are doing). However, the placement of tiny sensors in some haptic interface, such as a glove or brace, allows for possibilities that homecare nurses have desired for some time: improved care and quality touch points despite financial and logistical constraints.
Moving forward, it’s clear that some amalgam of personal technology and behavior modification will cultivate an exciting digital landscape. It is also clear that the quality of care will continue to be determined by the patient/provider relationship. To quote Vince Kuraitis, author of the eCareManagement blog on healthcare technology, “Maximizing automation isn’t necessarily the right way to go. A better way to look at this is as optimizing the right mix of automation and patient involvement.”
The headsets work by translating brain waves into digital information that can be captured and transmitted. Some of these adaptive technologies have been presented as part of the Royal College of Art and Imperial College program for the London Paralympic Games, as a way to make these events more inclusive for people with disabilities. What is also of interest to this space is the potential application to such health-related contexts as manual disability, mental wellness and post-traumatic stress disorders:
Neurologists already make use of electroencephalograph (EEG) technology, which helps to diagnose epilepsy by studying the brain’s electrical impulses. In fact, the New York Times reported in 2011 on ECoG (electrocorticographic) implants that help patients with brain disorders control game interfaces, solely by using their minds.
“The technology has implications in behavior modification. Two prisons in England, for example, show inmates a gangster-themed film from MyndPlay that teaches them to stay calm during threatening situations … psychiatrists have long trained the brain’s pre-frontal cortex to fight against acute conditions like anxiety, post-traumatic stress and attention-deficit disorder. What if a person could derive the same kind of benefit from a mind-controlled videogame?”
It’s exciting (and a little scary) to think that we may be seeing a whole new way of interacting with computers — one that doesn’t involve a keyboard or mouse, or waving your arms about in front of a lens, or pointing a laser stick at a wall. This could be a tremendous asset for people with physiological barriers, not to mention the therapeutic benefits of helping those in need of alternative stimuli to get through the day.
The Austin American-Statesman released the piece just before my keynote at Knowbility’s AccessU conference, with subsequent pickups by the Dayton Daily News, Denver Post, Flying Kite and Phys.org. It’s a nice overview of how technology needs to accommodate users with physical and cognitive challenges in order to advance, which is pretty much the premise of the book. It’s great to see accessibility get some mainstream media play, and I’m humbled by the opportunity to serve as (just one) voice representing this demographic interest.
Update: the May 16 issue of the Raleigh News Observer picked up the story.
Last week I had the pleasure of delivering the keynote address for the John Slatin AccessU Conference, held by Knowbility in Austin, TX. Among the case studies I presented was the use of the Kinect by the Lakeside Center for Autism, located outside of Seattle. If you haven’t seen the video, I recommend having a look below to see the benefits this emerging technology is having on Lakeside students:
A great new development is the creation of Kinetix Academy, the result of LCA winning the “Innovation in Issaquah” award for their use of the Kinect in therapy. They are putting together a wonderful educational program designed around the capabilities and potential of the device. The program’s origin and intentions are detailed on the LCA blog:
[Our great idea] is to create a comprehensive curriculum of educational and therapeutic games specifically designed for children with autism to support their development of motor, speech and language, cognitive, academic, and social skills….and it’s called Kinetix Academy. Ever since I caught wind of the Kinect (back when it was still called Project Natal) I’ve been dreaming about how we could use this technology to support kid’s gross motor skills. Over the past six months or so I’ve slowly put some of those ideas down on paper and started to think through the developmental sequences, feedback and reinforcement schedules, and opportunities to target other areas of development.
The Center is now assembling its pitch team to collect funding interest, and have already recruited a graphic designer and Kinect developer to create some quick prototypes. This is the sort of innovative endeavor that deserves wider attention among the corporate healthcare industry. Follow their progress on Facebook and Twitter.
According to this article in New Scientist, early detection is key because speech and interaction therapies work best when begun earlier in a child’s life. There are many subtle differences in symptoms among spectrum disorder kids, and the idea is that the Kinect may pick up certain tendencies in behavior. An experienced pediatrician may then have more detail to make a proper diagnosis:
“The idea is not that we are going to replace the diagnosis, but we are going to bring diagnosis to everybody,” Guillermo R. Sapiro says. “The same way a good teacher flags a problem child, the system will do automatic flagging and say, ‘Hey, this kid needs to see an expert’.”
Using the Kinect for children on the spectrum is not new. The Lakeside Center for Autism, located in the Seattle area, has been using the Kinect with their students since last year. Watch the video below for a peek:
The system will be presented at the IEEE International Conference on Robotics and Automation in St. Paul in May 2012.