CSUN International Technology & Persons with Disabilities Conference
Delivered March 19, 2014 in San Diego, CA (USA)
Kel Smith, Principal of Anikto LLC and Founder of Anikto Health
Hello, and thanks for attending this presentation. I'll start with the theory of blue ocean strategy. This is a new concept among business strategists constantly looking for opportunities to reinvent established norms.
Blue oceans denote unknown market space, untainted by competition, where the demand is created rather than fought over. Red oceans represent industries in existence today, where companies outperform their rivals in order to grab a greater share of existing demand. Blue oceans are not about technological innovation, as often the underlying technology already exists. It’s about linking innovation to that which buyers already value and what hasn't yet emerged.
We have both a blue ocean and a red ocean in healthcare technology. Our healthcare ecosystem is increasingly cognizant of how personal devices and apps will promote engagement between healthcare consumers and providers. However, this same ecosystem has not kept pace with the need to accommodate people with disabilities. This is the "blue ocean" in today’s health landscape, but we'll see that closing this gap will prove to be more complicated than it originally appears.
Take the Higi, for example. I first saw this device last year at SXSW. It’s a kiosk that takes your blood pressure, blood sugar, heart rate, height, weight and other vital inputs. There are slots for you to connect your personal health devices, and a built-in Kinect reads your walk as you approach the station. Once your data is captured, the Higi outputs a “health score” to your Higi account. You then compare your score to other users within your social media circles and compete with each other to improve your health (such as eating better and exercising more often). The idea is that as everyone's scores improve, so does their indvidual health.
Today the Higi is installed in grocery supermarkets and retail pharmacies all over the United States. I was intrigued by the Higi because the promotional material says it’s "ADA compliant." I wanted to see how accessible it really was, so I took a road trip within a 65-mile radius of my home.
I discovered that the "accessibility" of the Higi varied widely according to how it was installed within the store. Some stores clearly made a sincere effort to enhance the usability of the Higi. One store actually set up a separate room, with guest seating and plenty of space to get a wheelchair in and out.
Other installations were not quite as successful. At one store, the seat of the Higi was used as storage for shipping containers. In another, a maze of shopping carts were stacked against the Higi device. Yet another store found the Higi located precariously next to the manager's office, with a glass door that swung directly into where the user was designed to sit.
What I found was an example of baseline accessibility rendered ineffective, demonstrating a lack of understanding for how someone with a disability might navigate their way to and around this device. This imperfect idea of what makes consumer healthcare technology accessible permeates the device market; we think we understand baseline compliance, yet the burden of proof lies in how a device is implemented in a real world setting.
On a side note: at one store, I was physically escourted from the premises after I was caught taking photos of the Higi. Not surprisingly, that store was one of the most inaccessible examples I discovered.
I say this knowing full well that, as someone who spent nearly a decade working for agencies specializing in pharmaceutical & healthcare communications, even something as simple as a patient-facing website can cause accessibility issues.
About two years ago, I presented a competitive analysis of three consumer websites to a pharmaceutical client. Each site marketed a different product to treat a condition called wet age-related macular degeneration, or wet AMD for short. Wet AMD is a chronic eye disease in which abnormal blood vessels leak fluid into the center of the retina, causing the inside back wall of the eye to pucker and deteriorating a person’s eyesight.
Three consumer-facing websites were tested using the JAWS and NVDA screen readers. The first site skipped over all the primary navigation (images with blank ALT attributes) and ignored the page content to read a disclaimer in the footer. The second website was in Flash and completely ignored by the reader except for two graphics read as "button" and "button," respectively. The third website had a "three A's" text manipulator requiring a mouse event to activate a hidden block of text, invisible to screen readers.
Today, the accessibility of websites promoting pharmaceutical products ranges from abysmal to nonexistent. Not only are the sites technically inaccessible; they also lack content conveyed with relevance to a blind audience. Remember, these are websites specifically targeted to reach patients who have difficulty seeing.
We can go through a perfunctory survey of "big name" healthcare websites and capture all the accessibility gaps that currently exist online. This website has 23 accessibility items, according to a first-pass analysis conducted using the WebAIM online accessibility tool.
This one has 34 accessibility items.
This website has 37 accessbility items.
And this website has a whopping 66 accessibility items, and it is unreadable without plug-ins and script controls enabled. So why hasn’t basic web accessibility worked its way into providing quality online health content for patients with disabilities?
It isn't just websites. Research demonstrates that healthcare communications media is very much lacking for people who are unable to see. In 2013, I ran a survey among 45 patients who self-identified as having a vision disability. I discovered that almost all healthcare and medical communications failed to take into account patients who were blind or had low vision.
One question asked respondents how much they agreed with the following statement: "Most health-related content reflects an understanding of what it's like to be a blind or low vision patient." Nearly 80% of participants strongly disagreed with that statement, and the remainder at least somewhat disagreed.
Providing an accessible healthcare is a big concern for someone who needs to prepare or take medication. The human body is a wonderful marker for identifying common ailments or illnesses; however, most inspections require vision in order to accurately conduct a self-diagnosis. Someone who is completely blind cannot detect blood in the urine, nor can one conduct a melanoma self-check without assistance. Furthermore, prescribed self-diagnostic tools remain largely paper-based, and the needs of blind patients are not as well communicated among medical staff as those who are sighted.
In more extreme cases, accessibility can literally be about life or death. One woman I spoke with, a blind mother of a sighted child, put the problem into sharp perspective: "For blind patients it’s nearly impossible to dose medication properly," she said. "A change advertised as being great for the sighted can be dangerous for us."
I'll give you another example, and I hope you'll excuse me using a story from my personal experience. Two years ago I had a serious health situation that required immediate treatment. Today I'm fine, thanks to the excellent care provided by my doctor and surgeon. At the time, though, I was perusing every health-related website I could find in order to determine my best course of action.
As I ultimately found out, this practice is common among patients who receive a diagnosis like mine. It occurred to me, though, that I didn't have a copy of my pathology report. Without the medical data at my disposal, I was working with incomplete information.
When I called my specialist and requested my report, her reply was exceedingly polite. "No problem," she chirped into the phone. "Just give us your fax number and we'll fax it right over to you."
Luckily, I had a fax machine I bought in 2003. Once I had retrieved it from my attic and hooked it up to the landline, I was able to read my results.
I remember asking for my pathology report, and the reply was “we’ll fax it to you.” So I had to go up in my attic to retrieve the fax machine I bought in 2003, just to read my results.
Although I had my data and today live in relatively good health, something about this touch point seemed flawed. Do we not live in an era of interconnected devices, where our smartphones speak directly to our homes and capture our personal data? Don't we currently live in an era of what we call the "quantified self?" Aren't we constantly surrounded by technology—in fact, isn't the body itself an interface mechanism by which we communicate with that entity known as "big data?"
And what about a paper fax? If I were a blind person, how would I be able to read my results? Would I have access to the same opportunity for personal health information as a sighted person? If I have a disability, what are my options for acquiring tools to help better manage my care?
It must be frustrating to have a disability and recognize that while technological innovation in the healthcare space is advancing faster than ever, people continue to be left behind the curve. We have iPads in the doctor's office and Google Glass in the surgery ...
We have biometric devices and wearable computers, not to mention sensors woven into our clothes or attached to our bodies. Nearly everyone uses a FitBit or a JawboneUp while working out. We have electrocorticographic implants with the ability to capture data at every point in our waking (and even sleeping) lives. And yet, we seem to have trouble leveraging this vast landscape of healthcare innovation, especially on the technology side, while delivering something as common as an accessible e-prescription. Why is this?
The thing about healthcare (and why consumer health technology exists as a red ocean) is that it’s easy to think of the interaction modality as a single patient dealing with a lone physician or specialist, so we design for that lone touch point.
There are many touch points, however. Patients often have caregivers, and their care is at least partially funded by private insurers who contribute to group medical plans. If not privately insured, there is likely an employer or other payers, or possibly Medicare or Medicaid if the patient is of a certain age. These services are regulated by government policymakers, reimbursement specialists, e-formulary advisros and other environmental services. These regulations have a direct effect on how messaging and pharmaceutical advertising is delivered to physicians, hospital administrators, nursing staff, pharmacists and home care specialists.
All health care practitioners are required to take a certain number of continuing medical education credits. This content is often delivered electronically in the form of webinars. Every slide deck or media resource is filtered by a health education firm, at least one ethical committee and an internal review board. These entities must be completely firewalled from any marketing streams, in order to maintain neutral clinical credibility.
At this point, we haven't even started talking about technology stakeholders: equipment and supply vendors, health technology specialists, startup technologists, investors, strategic capitalists, biometricians, innovation "think tank" accelerators and e-health practitioners.
The reality is that there are many, many interconnected dependencies in the healthcare ecosystem. All of these stakeholders have play in how digital information is collected, transmitted and interpreted, from patient communities to healthcare professionals, from radiology technicians to internal review boards, from environmental services managers to venture capitalists who invest in new devices (and the suppliers who furnish them to the hospital).
See, what we call “healthcare technology” isn’t simply a matter of connecting patients with their physicians and health records. It's more than just apps and websites; it's remote patient monitoring systems and personal sensor devices, emergency medical services (remember "I've fallen and I can't get up"?), everything we read on the Internet, everything we install in our homes or on our bodies, all the data captured by government agencies, all the biotech and pharmaceutical research and prescribing telehealth services are heavily monitored among multiple stakeholders.
Healthcare technology sourcing codes cover as many as 300 security classes that define the user roles and resourcing for every type of nurse, physician, therapist, technician, billing clerk, lab, machine, examination room, patient record, operating equipment or medical chart.
It’s a very complex and vast network of resources spanning everything from admissions, to logistics, to transport, to discharge—and all of it is regulated.
As you can see, accessibility can break down at any one of these connective points. That’s why today’s health system cannot be revolutionized solely through technology—we have to understand and establish the behavioral elements that result when costs and risks are mitigated as an operational necessity. To address the needs of patients with disabilities, we have to think beyond technology and work to influence behavior where the most impactful interactions take place.
The reality is that we tend to experience healthcare as individuals, yet our design modality requires us to think of healthcare as a collective. This is due to an industry necessity to mitigate the risk of not delivering a quality clinical service for every patient type ...
... and the need to mitigate the cost of operating within a regulated system of interdependent shared services.
This is why I have stopped looking to innovate (or “disrupt”) healthcare through simple apps or devices, and instead hone my scrutiny on main touch points within the care continuum. Because the reality is, everything related to technology can be honed down to one of three critical interactions. We’ll call them Chat, Chart and Charge:
We'll take these one by one, starting with Chat.
We'll begin with a real world case study profiling a patient with a disability.
This is Denise Sherer Jacobson. She is 63 years old and lives in Oakland, CA. A writer by trade, she currently serves as vice chairwoman of the Mayor’s Commission on Person With Disabilities. Living with cerebral palsy has not prevented her from getting married, adopting a son and earning two doctorate degrees.
Despite her ability to live independently, however, Ms. Jacobson has a difficult time dealing with medical professionals. She gets frustrated when medical professionals insist that she have someone with her when she visits her local clinic.
"[Doctors] frequently make incorrect assumptions about me related to my intelligence, my ability to function independently and about the life I lead," she says. "They assume that because I have cerebral palsy I am not intelligent [and] must live with family or in an institution."
Ms. Jacobson is not the only patient with a disability facing difficulty in the doctor’s office. Lack of touchpoints has become a civil rights issue as well, and it's begun to emerge as an example of social discrimination.
According to a May 2013 article in the New York Times, patients with disabilities tend to be in poorer health and receive substandard preventive care than those without disabilities. In 2013, the Center for Quality of Care Research in Springfield, MA conducted a study of 250 doctors’ offices in four major US cities. When presented with a fictional patient with a disability wanting to see a doctor, only half the physicians were able to complete a full examination, while 20% of the remaining offices refused to even book the appointment.
As far as accessibility in the doctor's office is concerned, you can usually get in the door but not much further. Height-adjustable exam tables, for example, can cost $4,000 or more. Even with federal tax credits and deductions, the additional work takes up office time and is not reimbursable. Very few healthcare organizations endorse accessible access to a physician’s office as a civil right, citing issues relating to cost and regulations and claiming accessibility as an "unfunded mandate" (completely negating the ADA as a form of civil rights legislation).
Women with disabilities, in particular, are a minority within a minority. An article in the Annals of Internal Medicine found 44% of gynecological offices were not accessible to those in wheelchairs. People with disability tend to be in poorer health, and women with disabilities are more likely to have breast cancer misdiagnosed.
"Health care is really one of the last bastions of this kind of discrimination," says Lisa I. Iezzoni, MD, and Director of the Mongan Institute for Health Policy. "It’s curious because we are talking about health care."
On surface inspection, it's easy to blame "big bad healthcare" for deeming patients with disabilities as an economic drain on resources. They require more time in doctors' offices, often have lengthy medical histories and are considered higher risks among for-profit insurance companies.
Honestly, though, these rationalizations appear to be nothing more than cop-outs. The reality is that the social stigma really starts during childhood. From the point of grade school, our acceptance of discriminatory practices promote segregation as a social norm: children with disabilities are housed in different rooms, transported on different buses, have different friends and attend special classes.
The funny thing is, I’ve personally spoken with a number of patients who were treated in wonderful institutions dedicated to their care, in particular Children’s Hospital of Philadelphia and Bloorview-Holland Rehabilitation Hospital for Kids. People who "grew up" among these healthcare practitioners absolutely rave about their experiences, and they have nothing but great things to say about the fantastic healthcare staff who attended to them.
So perhaps the greatest irony is how poorly preserved this cultural stigmatism when traversing across the healthcare divide. When a person with a disability reaches adulthood, her fundamental access to healthcare turns a sinister corner; the same level of attentiveness and innovation just isn’t to be found. And that appears to be a large part of the disconnect in today's landscape.
From an accessibility standpoint, patient-contributed information will be the crucible of proof. It is expected that ePHR systems will interface with personal smart phone and tablet devices by 2016. With the FDA having removed consumer roadblocks to medical app innovation, much of the regulatory focus will now fall upon apps that turn mobile phones into personal medical devices.
On paper, this could be a tremendous benefit to patients with disabilities, especially those who cannot travel from their homes. In practice, the inaccessibility of health IT systems may become just another logistical barrier. An exception would be Project Blue Button, which is an effort put forth by the Health & Human Services department. Blue Button brings greater support to patients seeking access to their health histories; they have already done wonderful work on behalf of the Veterans’ Administration.
So it would appear that the meaningful use of consumer health technology has already worked its way into the ways we monitor personal health. What we don't entirely recognize, however, is what attributes of an electronic personal health system would have the most impact among people with disabilities. Because for most patients, their understanding of personal health records is limited to appointment reminders and dosing calculators.
Thankfully, there is a study that can help us understand just how wide the gap is between ePHR and accessibility.
A project funded by the National Institute on Disability and Rehabilitation Research (NIDRR), in collaboration with the WGBH National Center for Accessible Media and the Center for Biomedical Informatics at Children’s Hospital of Philadelphia and the Inglis Foundation, produced some interesting results with regard to what patients with disabilities are seeking in their electronic personal health records.
The study profiled 150 patients with disabilities of all types, many of them with multiple disabilities, and asked them to rank ePHR features on what they deemed to be most important. The study then cross-ranked these same features according to patients’ levels of satisfaction. It made for a fascinating snapshot of how out of sync healthcare technology is with regards to the needs of people with disabilities.
Simple tasks like receiving appointment reminders and filling prescriptions rated high on satisfaction; however, users with disabilities rated these tasks very low on the scale of importance.
Items that rated low on satisfaction and high on importance included having insurance information available in an emergency, communicating test results between multiple providers, and retrieving one's medical history in an accessible format. But this doesn't necessarily point to the areas of greatest need among patients with disabilities.
What I always look for, though, when presented with this sort of data is the spread between polarities. In this case, I'm interested in the difference between what people really want and what we as technologists are actually providing.
You don't have to do the math; I've done it all for you. From the data collected in this report, we can identify the following top four healthcare gaps that exist among patients with disabilities:
Which brings us to the touch point we called Charge and how we manage the rising cost of preventive care for patients with disabilities.
In February of 2009, President Obama signed into law the American Recovery and Reinvestment Act (ARRA), more widely known as “The Stimulus Act. Its purpose was to kickstart the US economy through subsidies paid to key economic sectors. The Stimulus Act led to special incentives (under Title IV) paid to Medicare and Medicaid participating providers to adopt and ensure “meaningful use” of “certified health record technology” as defined by the Department of Health and Human Services (HHS).
So in this context, "meaningful use” is the term applied to a set of standards defined by the Centers for Medicare & Medicaid Services (CMS) that governs the use of ePHR, allowing eligible providers to earn incentive payments by meeting CMS criteria. Practices are expected to adopt such digital workflows as e-prescribing, submitting lab reports and computerizing medical and radiology orders.
The financial incentives are significant; by meeting meaningful use benchmarks, compliant physicians will be reimbursed up to $44,000 over five years by Medicare. Medicaid will subsidize practices up to $63,750 over six years. With the difficulties that patients have just getting to the doctor’s office, it makes sense to explore ways in which electronic personal health records (ePHR) may provide benefit to improving physician-patient touch points. Improving patient health outcomes by promoting the quality, safety, and efficiency of health IT services is a trickier challenge, however.
A large part of the problem is EHR's themselves, the usability of which is horrendous.
In July 2013, Black Book Research surveyed nearly 3,000 medical PHR users. 92% of clinicians in hospitals reported frustration with basic EHR functions like sharing chart data, and 87% willingly claimed usability issues as their primary compliant. This leads to an estimated $9000 and $15,000 in lost revenue per physician.
These accessibility and usability issues have become a very expensive problem for both patients and providers, especially when it comes to testing new innovations that can make a difference in a patient’s life.
When settings in a physician’s EHR defaults to normal test results rather than record an abnormal result, we can see where simple transcription errors as the result of usability can have disastrous consequences. The lack of a usable EHR system interferes with the management of care for patients of all types.
One prominent AHRQ executive once said: "Meaningful use was meant to stimulate innovation, but people use it instead as just another checklist." And our current healthcare system doesn't need to create more regulatory guidelines just for the sake of their existence.
Where meaningful use falls short is in providing financial reimbursement for long term care and home services, neither of which are eligible for subsidies. Many nursing homes are "stuck in neutral" when it comes to installing electronic health records, with about 16,000 skill nursing homes adopting EHR's at a significantly slower rate than hospitals and physician practices.
Keep in mind that it costs about $30,000 to $50,000 to purchase and install a very basic EHR system in a 100-bed nursing home. Adding on annual maintenance costs of $25,000 to $40,000, the exclusion of nursing homes from the federal EHR incentive program keeps many providers from adopting EHR's. This is especially true for small, privately owned facilities whose ownership changes frequently, since companies are not willing to make a long-term investment unless it dramatically improves the quality of care.
Some parents take matters into their own hands – literally. Rather than wait for a prescription to be filled to approve funding for something like an electric wheelchair, people have begun to innovate more “grass roots” approach to innovation.
This is not a new trend; the first typewriter and early versions of recorded material were invented specifically on behalf of people with disabilities, because it’s all about designing for extremes. The challenge, from a billings and receivables perspective, is how to commercialize these tools at a cost point that provides benefit to both patient populations and prescribing physicians.
But there’s another side to the Charge equation. Dana Florence heads up a non-profit called Three To Be, which provides support to parents of kids with disabilities. Herself the mother of three children, all with cerebral palsy, Ms. Florence emphasizes the frustration felt when she knows that a new technology is available but she can’t access it due to cost: “Most frustrating is waiting for something that we know we won’t ever have access to that may change our child’s life.”
So how do we find the blue ocean in today’s accessible health landscape? I have six ways we can do this.
The good news is that we are entering an exciting time in e-health. We exist on the brink of the “quantified self” where clinical indices can be tracked with wireless sensors and haptic interfaces, encouraging doctors to embrace personal devices and achieve meaningful use criteria.
According to Jeff Loughlin, project director for the Massachusetts e-Health Collaborative, physicians must be willing work with patients to better comprehend their health data. “The mentality is that patients think medical records are for medical professionals,” says Loughlin, who describes an “ownership” model in which patients will assume greater responsibility for their care, while at the same time taking into account what patients with disabilities truly want from their electronic health data.
The funny thing is, most people want to please and trust their doctors. They don’t necessarily want more care; they want the right care. And they don’t want all their data; they want it contextualized so they can transparently decide the best course of action in parallel with their doctor’s expertise.
An accessible ePHR landscape is one step towards breaking down the last remaining pillar of discrimination. It will allow more people to get more of the information that’s important to them, thus ensuring greater engagement and health literacy for patients of all abilities.
The complexity of today’s healthcare organizations makes it difficult to affect global change on how things are done. Ambitions to revolutionize healthcare are often stalled and result in disappointments.
What are much more effective are small, barely visible interactions that provide greater impact without derailing process with a sweeping organizational makeover. These “micro-moves” encourage physicians and nurses to notice the taken-for-granted aspects of the care path. These are systemic operational tactics that require very little effort and practically no expense. It allows insiders to come up with their own improvements, rather than be jolted into change by an outside consultant. It also moves leaders/clinicians out of their familiar roles.
In Wisconsin, for example, a team of C-suite level clinicians were asked to take off their uniforms, put on “civilian” clothes and interact with people as they navigated the admission and discharge units of the hospital. These high-ranking healthcare professionals realized they had very little understanding of how things really worked in their outpatient clinic. Meetings were scheduled with groups of patients for open-ended Q&A sessions.
In Washington DC, hospital residents were taken on public transportation in order to get an idea of the effort required for someone to visit the ER. Many of them had no idea that some patients were willing to tolerate three bus transfers and a Metro ride (costing people on fixed incomes up to $30 in transportation fares) in order to take their child to the doctor. By leaving their uniforms behind and walking the care path of their patients, physicians achieved great discoveries.
The emphasis on system technology and utilization must be accompanied by an attitudinal shift regarding accessibility among online healthcare communities. It goes beyond simple web accessibility; designers and technologists who work in healthcare would do well to acquaint themselves with the Patient Engagement Framework, released by the National e-Health Collaborative.
It’s been suggested that the introduction of HIT, rather than leading to improvements in the quality of data being recorded, has led to a greater quantity of bad data, and that the poor usability of many electronic data systems is actually leading to poorer outcomes.
A set of Final Rules published in Sept 2012 (and taking effect in Oct 2013) now require that “medical hospitals and professions can receive substantial financial incentives if their internet-based medical record systems comply with WCAG 2.0.” This means that there is a base level of accessibility for patient-facing PHR’s. This is a step in the right direction.
But it’s not just consumer-based health websites that need inclusion. Adoption rates of EMR for nursing homes and long-term care facilities is exceptionally low—less than 12% of nursing home facilities have an operable electronic media records system. And we’ve already outlined the lack of usability among hospital EMR systems.
There is a thought in today’s “design thinking” that positive deviance and social innovation rely on localized expertise to bring human-centric solutions to cultural problems. Design thinking allows high-impact ideas to up from below, rather than being imposed from the top.
There are amazing things taking place in university tech labs, local hackathons and hospital research departments. We need to reclaim the culture of innovation that compels efforts towards a greater social good, and subsidize not only the research but also the commercialization of these products for the evidence-based healthcare practitioner.
One way to accomplish this would be to support funding for small-scale clinical experience programs among clinicians—even the research gathered from a small sampling of patients can build enough data to comprise an article for a medical journal. We need more clinical support for grass roots innovation and increased procedural adoption for low-risk, non-invasive devices among Internal Review Boards.
In 2013, the FDA finally released guidelines that cleared most health-related apps as negligible threats to consumers. Most of the 17,000 “mobile medical” now don’t need federal regulations in order to be sold as mobile health apps; instead, the FDA will concentrate on apps that turn the smartphone into a medical device.
I’ll submit that this is a worthy step up in the e-health paradigm. We need to keep a close watch on apps that purport to replace the doctor’s visit, or that perform clinical tests as an alternative to machines found in hospitals.
More importantly, though, we need to concentrate less on gadgets and apps, and more on the Chat/Chart/Charge touchpoints upon which our healthcare ecosystem is predicated. According to the four gaps I demonstrated earlier, we don’t need more apps to help us make appointments, calculate dosage and track how far we walk.
We also need university research teams and amateur hackathons to address issues related to patient/doctor communication, cross-system integration and cost management. And we need evidence-based results from real-world pilots launched in actual hospitals—not just on a startup's whiteboard.
Opportunities for increased engagment abound in an unlikely place: the waiting room. Just imagine the ways we can activate front desk nurses with accessibile mobile technologies designed specifically for patients who are blind or have low vision. This covers the Chat (and maybe Chart) requirements.
There are already innovations taking place. George Halvorson, chairman of Kaister Permanente, says that one way to lower healthcare costs is to remove care further from the hospital setting and integrate multichannel networks. “We think the future of health care is going to be rationing or re-engineering,” he says, wary of a future in which cost controls will be imposed on provider networks without the benefit of shared interdependent resources.
One of the hopeful by-products of this re-engineering will be increased accountability by nurses, technicians, front-desk staff and other support entities within the healthcare ecosystem. We’re already seeing how the “accountable care” model compels health IT groups to partner with physician networks, providing financial incentives to compliant practices. How that compliance is manifested may well reside in the hands of the support staff who keep our health system moving forward.
I often say that disability is the one minority group of which anyone of us can join at any time, and the one attribute that we are all likely to possess at some point before we pass on.
No one describes the concept of empathy better than Dr. Michael Graves. Dr. Graves is a former artist and architect who, at the age of 68, went into the hospital with a bacterial infection that ultimately left him paralyzed. Today he owns a company that designs medical instruments, and he demands that his staff actually spend time with people to get an idea of what it's like to be in their position.
Here's a quote that describes what it was like for him on the morning he realized his life had changed forever:
“Early on, my first day out of bed at Kessler Hospital, I went into the bathroom in my wheelchair to shave. I looked in the mirror and the bottom of it was at the height of my forehead. I couldn't see my face, so there was no shaving with a straight razor. So an electric razor was brought to me, and I tried to plug it in, and it was out of reach for me. And I thought, well, at least I can wash my face, but I couldn't reach the faucet. So the next day when my surgeon came by, I asked him to get in a wheelchair and come to my room. I strapped him into the chair, and he couldn't reach anything. I asked, ‘Who designed this?’ And he said, ‘Experts.’”
So yes, we do need experts. But we also need empathy. And that empathy grows when we accommodate attributes in a person that cannot be readily changed.
I’ll leave you with this wonderful quote by my friend and colleague Karl Groves, who once told me: “Accessibility is about providing fundamental human services to benefit more people in more situations.” I've thought about this every day in the two years since he said it. And what could be more fundamental than looking after the best interests of our collective health and wellness, especially for those who stand to benefit the most?
Thanks so much for your time. My name is Kel Smith and I run a company called Anikto, pronounced ah-NEEK-toh and named after the Greek word for "open." Last year, I launched a subdivision called Anikto Health specifically to deal with stuff like this. It’s a slow revolution, but we’re making progress.
If you’re interested, I wrote a book called Digital Outcasts: Moving Technology Forward without Leaving People Behind. It was published in 2013 by Morgan Kaufmann and is available on Amazon. Those who’ve read the book have told me that it’s pretty good.
You might also be interested in Peter Jones’ book, Design For Care, published last year by Rosenfeld Media. It has many, many examples of how the healthcare ecosystem can be improved by better design and is a worthwhile addition to your library.
Before I take questions, there are a few folks I need to acknowledge. Primary thanks to Dean Karavite of the Center for Biomedical Informatics at Children’s Hospital of Philadelphia, for reviewing my presentation numerous times for accuracy.
I also need to thank Larry Goldberg of WGBH National Center for Accessible Media for letting me use his data slide on personal health records.
Special appreciation to Frank LaMacchia at Children's Hospital of Philadelphia for his friendship and support.
Thanks to Gavin Kerr at the Inglis Foundation for providing me numerous connections and visits to Inglis House.
And finally, thanks to Jim Tobis of Inclusive Technologies for his thoughtful review and refreshing insights.
Thanks for listening. I’ll take questions now.