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Looming Caregiver Crisis in the U.S.

AARP’s Project Catalyst recently released a study in collaboration with HITLAB, the healthcare innovation and technology lab based in New York, that shows a very high family caregiver interest in using new technologies to help care for loved ones (71%), but the actual usage today of technology by caregivers is very low (7%) due to the lack of awareness of viable options and the time challenges involved.

According to Laura Pugliese, deputy director of HITLAB and member of the research team, the study is “a call to action regarding the tremendous challenges facing our society and unpaid family caregivers, who are unsung heroes. We are helping to put together a road map for innovative companies to produce technology products and services in the caregiver marketplace to address unmet needs. We want to find out what works and what doesn’t.”

That is the basic goal of AARP and its partners in Project Catalyst, including the medical researchers at HITLAB. The staggering statistic in this study is that by the year 2020 there will be 117 million Americans (including the aging baby boomers) who will need assistance with daily living and healthcare issues. The problem is that, although 117 million people will be in need of a wide range of assistance, it is projected that only 45 million family members will be available to help care for their loved ones. These family members are not only unpaid, but lose $522 billion in income, according to the study (“Caregivers and Technology: What They Want and Need”).

As a former caregiver for both my mother and father, who served in WWII and who were part of America’s greatest generation, I can’t even begin to share how stressful, time-consuming and emotionally draining the process is and the profound impact it played in both my personal and professional life.

As a caregiver over the span of several years, I became involved in finances, banking, wills, estates, taxes, power of attorney, selling a home, healthcare directives, Social Security, Medicare, Medicaid, senior housing, assisted living, nursing homes, DNR orders (Do Not Resuscitate), doctor appointments, surgery, emergency room visits, hospital stays and end-of-life decisions, in addition to just being a son and a brother. I wouldn’t have it any other way, of course.

The only technology available to me was my cellphone and answering machine, but AARP Project Catalyst has identified nine frontiers for innovative technology companies to address:

  • Medication Management
  • Vital Signs Monitoring
  • Diet and Nutrition
  • Aging With Vitality
  • Healthcare Navigation
  • Social Engagement
  • Physical Fitness
  • Emergency Detection and Response
  • Behavioral and Emotional Health

These nine frontiers certainly identify the key areas of concern of a caregiver. However, as I thought about all the time and effort involved from my own personal experience, what is lacking is overall caregiver support. I was often asked, How is your mom? How is your dad? Nobody ever asked how I was doing.

Nothing can prepare you for this caregiver role. In the middle of intense professional obligations as a vice president with responsibilities to major clients, I had to sell a house, find good doctors, get power of attorney, prepare financial statements, pay bills and find cleaning services while seeing that my parents were getting the best healthcare available at the right time and place and taking all the right medications.

Being a caregiver is at minimum like having a part-time job, unpaid. The AARP/HITLAB study found that on average a caregiver spends 20 hours a week on a wide variety of tasks. From my experience, that is about right on a good week.

I can envision existing and future technologies having the ability to better monitor medication regiments. My father, who suffered from congestive heart failure, a blocked carotid artery, diabetes, arthritis, sleep apnea and other ailments, was given so many medications that I had to work with the hospital pharmacy department to develop a check list of what medications he should be or not be taking, what for, why and how often. I developed a handmade chart on his refrigerator door and put numbers on his prescription drug bottles. My handwritten instructions were take # 1, 2, 6, 8, 10 and 12 in the morning, another set in the afternoon and another set at night. It worked, but I had to do this myself by hand with help of a pharmacist.

Initially, the doctors wanted to amputate my father’s legs due to poor circulation from congestive heart failure, but by getting a second opinion we learned that his cardiologist was prescribing the wrong medications. I got him a new cardiologist and the right medications. A dad whose sons didn’t have our healthcare background and connections would have needlessly lost his legs and his quality of life.

Although there are technologies in use today, the actual usage based on this real world study is only 7%. The ability to monitor vital signs, especially for people with sleep apnea, congestive heart failure and other chronic conditions along with glucose levels for a diabetic can bring both peace of mind to a caregiver and potential lifesaving capabilities for the patient.

This study should be a call to action, and I’m sure there are many potential technologies in the pipeline or on the drawing board. I am also glad that people like AARP and HITLAB and the sponsors of Project Catalyst, including Pfizer, UnitedHealthcare, Medstar Health and the Robert Wood Johnson Foundation, are working on this road map.

Project Catalyst is actually reaching out to caregivers themselves to determine what their needs are and what works and what doesn’t. HITLAB medical researchers literally went to people’s homes to interview them to determine their daily needs and their use of technologies as a caregiver. I believe a very comprehensive list of potential technologies should be developed and tested. I see that healthcare technologies and apps are being developed and tested now to address health monitoring such as vital signs and glucose levels. My fear is that this potential use of technologies will be fragmented and require multiple companies, each addressing one of the nine identified frontiers, and may be cumbersome or expensive.

A major issue will also be the ability of medical providers to monitor these vital health signs and other health issues in real time. In addition, will the health insurance industry, including Medicare and Medicaid, be in position to pay primary healthcare providers for this monitoring?

I would also like to see innovative companies provide a comprehensive list of capabilities to help with all the non-direct healthcare needs of a caregiver, such as selling a home, power of attorney, healthcare directives and finding professional caregivers such as visiting nurses, assisted living and nursing homes.

Stan Kachnowski, chairman at HITLAB, stated; “Our goal is to help bring the best technologies to the caregiver marketplace in order to make a positive impact where the patient (and their caregiver) comes first and profits last.”

AARP and HITLAB plan to continue their research and will conduct a series of pilot programs to test new technologies.

This is something that will eventually affect almost everyone either as a patient, caregiver or both. When doctors say there is no known cure for congestive heart failure, diabetes or Alzheimer’s or other chronic conditions, they mean it.

Digital Tech to Fight Childhood Obesity

Parenting in the modern world means worrying about how much time your child spends in front of a screen. Pediatricians may recommend only two hours of screen time a day, but kids actually spend as much as seven hours a day looking at TVs, computer monitors, video games, tablets, and cell phones. Study after study has linked those sedentary hours to the skyrocketing rate of childhood obesity in the U.S.

I realize that it’s not realistic in today’s high tech world to restrict screen time to two hours, especially for teenagers. So here’s an alternative: How about harnessing some of that technology to make our children healthier? The need couldn’t be more dire. One in three children in America is overweight or obese, and obesity remains one of the biggest threats to the health of our children, both now and as they grow into adults. That’s why the Robert Wood Johnson Foundation announced that it will pledge $500 million over the next 10 years to expand efforts to ensure that all children in the U.S. — no matter who they are or where they live — can grow up at a healthy weight.

Building on a $500 million commitment made in 2007, this brings our funding of this issue to $1 billion. To get the biggest impact for those dollars, we need to come up with fresh ideas, creative approaches, and new tools that will help us build a culture of health for our children, and their children. What better tool than the digital devices our children have already mastered?

And adults can lead by example, because many of us have already embraced digital health tools. There are currently 17,000 mobile apps designed to improve our health; according to industry estimates, half of the world’s 500 million smartphone owners will have a health app on their device this year. Plus, some 70 million wearable fitness trackers were sold in 2014, and people are expected to buy another 160 million by 2016.

Of course, having health apps and using them is not always the same thing. And getting kids to use digital technology and social media for health is yet another challenge. But it’s not that big of a leap from Snapchatting with friends, or searching YouTube and Vine, to sharing stats and photos about how many days you walked to school, vegetables you ate or miles you rode on your bike. Almost 95% of 12- to 17-year-olds in the U.S. have Internet access at home or school. Why not meet them in their online world?

We already know it can work. Zamzee, a children’s online activity meter and motivational website designed by HopeLab, with feedback from actual kids (and funding from RWJF) is meant to get kids moving more. Research shows that Zamzee increased physical activity in kids by 59% on average over a six-month study period.

There is a growing number of such digital health tools designed with kids in mind. The Weigh2Rock.com website, founded by a pediatrician, allows overweight teens, pre-teens and their parents to form support groups, share tips and track their personal fitness goals online. It also allows healthcare providers to follow the progress and interact with their patients online. Leapfrog’s Leapband, introduced in August, is a personal fitness tracker for children. Worn like a watch, it uses games to get kids moving and allows them to rack up points as they progress though the challenges. FoodnMe.com, a site that promotes healthy eating, has a fun SmashYourFood mobile app that lets kids smash or explode a variety of foods (virtually, of course) while learning about their fat, sugar, and salt content. Actually, this one is fun for adults, too

I’d like to see a lot more of these digital health tools for children. My hope is that developers, parents, health professionals and coaches will start thinking more like kids. Or, better yet, ask some kids what technologies and apps would most entice them to embrace healthier choices. I’ll bet they’d come up with some pretty creative ideas. Let’s start now. If you have some ideas about how to harness personal data, digital technologies and social media in ways that can help kids, and their families, get and stay healthy, please share in the comments. Because even $1 billion won’t solve this problem without lots of help.

How to Avoid Paying for Hospitals’ Errors

There’s been a lot of talk lately about value-based purchasing and price transparency in the U.S. healthcare system. With the proliferation of high-deductible health plans, consumers and payers are now actively chasing “value”— high-quality care at the right price. But what happens when “value” calculates to a grand total of zero—or even less than zero?

Only in healthcare is that even possible. “Zero value” occurs when healthcare is harmful—and you, the patient or purchaser, pay extra for the privilege of that harm. This is the issue currently facing employers and other purchasers paying out of their own pockets when a hospital commits an error that results in injury, infection or other harm to a patient. It’s backwards and incomprehensible, but healthcare purchasers are at the mercy of these zero value “hidden surcharges.” The payer gets the bill for the added length of stay and treatment of the infection or the medication error, even if they were preventable. This is common, and it’s not cheap.

The Leapfrog Group created the Hidden Surcharge Calculator, which estimates that, on average, an employer pays approximately $8,000 per hospital admission for errors, injuries, accidents and infections. The calculator was recently awarded  a “Certificate of Validation Seal” by the Care Innovations Validation Institute, an organization established by Intel and GE to rate healthcare tools, plans and vendors to help industry consumers make educated choices. The Hidden Surcharge Calculator is free and allows plans and employers to determine surcharges they pay for their covered lives.

To build on the findings from the calculator, Leapfrog crafted additional tools to help purchasers apply their leverage with hospitals in their communities, communicate effectively with their employees about patient safety and try to reduce some of these shocking surcharges. So we launched the Hospital Safety Score Purchaser Toolkit, also free, created with the support of a grant from the Robert Wood Johnson Foundation. The toolkit is being released at a crucial time of year—the beginning of open enrollment season. We know that employers want to help their employees make the best decisions about their healthcare, and we hope that our toolkit will foster genuine conversations on these issues.

We include downloadable “plug-and-play” communications, including newsletter articles, internal memos template emails and even sample tweets. Messages educate employees about the problem of patient safety and what they can do to protect themselves and their families. It provides background and instructions for using the Hospital Safety Score, letter grades that assess the safety of general hospitals. There’s also a series of whiteboard videos that explain the issues in plain language and can be downloaded at no cost.

Just as importantly, we want to encourage purchasers to use their own leverage to effect change. Despite the harm to employees and expense to the bottom line, patient safety is rarely observable in claims data. Purchasers have to rely on hospitals to voluntarily report on safety to the Leapfrog Hospital Survey. By putting pressure on hospitals to publicly report to Leapfrog, healthcare purchasers can ensure that transparency and accountability are at the top of every hospital’s agenda. The toolkit offers suggestions on joining local business coalitions on health to maximize regional leverage, communicating with hospitals and getting needed provisions in contract language with plans.

Value-based purchasing is nonsensical when value is less than zero, so plans and purchasers need to be more aggressive on patient safety. Otherwise, payment reform loses its raison d’etre.

Because the safety problem is so large and hard to pinpoint, many payers just give up. The Purchaser Toolkit, Hospital Safety Score and Surcharge Calculator are meant to provide them with concrete steps that will make a difference immediately.