Month: August 2015

This article was originally written for and published by Healthcare Demystified, the healthcare policy and innovation blog of Healthcare.com, where I am a weekly columnist.

Wearable fitness trackers and their complementary smartphone apps are taking the world by storm. There is breathless media coverage and a growing army of gadgets ranging from glorified pedometers to glucose-monitoring contact lenses. While at least one in five Americans now has a wearable device and two thirds intend to use digital tools to track some aspect of their health, and the trend shows no sign of slowing with68.1 million wearable devices estimated to be produced in 2015, the actual health benefits of these tools have not materialized for everyone.

Along those lines, The Washington Post detailed the “revolution” in a lengthy feature earlier this year, and quoted Deborah Estrin, a professor of computer science and public health at Cornell: “Getting the data is much easier than making it useful. […] It’s unclear how important and meaningful it is for the everyday person.”

Part of those underwhelming results might be due to human nature rather than because of the devices themselves. In early July, Megan Garber wrote in The Atlantic about the Ennui of the Fitbit: research indicates that a third of trackers are abandoned within six months and that more than half of people who purchase trackers will ultimately abandon them. With the case of Fitbit, which commands more than three-quarters of the market for wearable health technology in terms of revenue, just 10 million of the company’s 20 million registered users are still active.

People stick to habits and use devices that add some kind of value to their lives. For a young and relatively healthy person, Fitbits and similar gadgets might be alluring and nice to have, but can quickly lose their luster. For a few people, having an up-to-the-minute accounting of steps taken, calories consumed, weight recorded, and hours slept would inspire positive behavior change. For most others, it might become annoying and perhaps create more stress.

Mobile technology has long become mainstream, and people from all walks of life are on board, but the tech industry appears to be designing wearable health gadgets almost exclusively for the folks described as “young invincibles” or “worried well.” As such, the actual health-improving mechanism is sometimes given less attention than the development of attractive user interfaces and slick marketing campaigns.

How might we move past seeing these devices as mere entertainment value or social capital and increase adoption among people who are elderly, low-resource or have poor health status – and especially for those who check all three boxes? Making cool and informative devices that people enjoy using is undoubtedly a good thing, and such business should continue to thrive as long as the free market rewards these products, but we are not taking advantage of a major opportunity to invest in bringing wearable devices and other personal health technology to the populations that are often not included in the “target market” section of startup pitch decks. These inspired startups and their investors could make a real impact with populations that have the most “health to gain.”

How could these current leaders of innovation in healthcare spread their services to populations that are more in need of support? Rachel Davis, a senior program officer at the Center for Health Care Strategies (CHCS), explored the idea in a Health Affairs post in 2014. She cited research that found high adoption of smartphones among people making less than $30,000 per year, and CHCS focus groups suggested that lower-income populations would be receptive to increased use of digital health technology to track and manage chronic conditions.

Davis identified five principles issues that impact healthcare access for these populations: lack of consistent contact with health providers and technology, fragmented health care across settings, difficulty managing complex medication regimens, managing health needs reactively instead of proactively, and difficulty accessing transportation to and from appointments.

The exploding world of digital health startups is showing an interest in solving these problems of low-income, complex patients. The Robert Wood Johnson Foundation (RWJF) granted $500,000 to accelerator StartupHealth, which has more than 100 startup companies in its portfolio, to “make it easier for digital health entrepreneurs to develop […] products and services to meet the unique needs of [underserved] communities.”

One startup called Health ELT is building its entire value proposition on bringing “engagement, logistics and technology services” to Medicaid populations. The organization’s pilot study last year in Texas, involving 1,000 patients covered under a Medicaid managed care organization, nearly doubled engagement rates, cut emergency department admissions in half, and reduced hospital admissions by more than 35 percent. “Technology is transformative and critical to progress,” said Amanda Havard, Chief Innovations Officer at Health ELT, in an email. “We can’t keep affording that progress only to healthy and resourced populations.”

Havard has some advice for entrepreneurs who are new to healthcare and want to make an impact on elderly or low-resource populations: “Get to know the population. Get to know the system. Learn the obnoxious routes of red tape. Log time with people who know infinitely more about the industry than you do. Too often technologists roll their eyes at that. They think if they build a good enough product, then it will do what it’s meant to. This is a fallacy if you want to innovate in regulated industries. You must be willing to spend the time, energy, money, and intellectual space to learn about the industry you want to change so that the change you make is a relevant one.”

Public-private partnerships could combine private-sector ingenuity with the public-sector reach into disadvantaged communities. For one, the new Center for Medicare and Medicaid Innovation (CMMI), which wields immense influence over the finance and delivery of healthcare services to the elderly, poor and disabled, could serve as a translational intermediary between the innovative companies and the communities where need is high but access to good-quality care is low.

Apple, which is now becoming a power player in the quantified and mobile health space with its new Health app, has demonstrated a commitment to using its resources and broad user base for meaningful ends with ResearchKit, a software platform that allows medical research subjects to submit data that is collected by their iPhones. The program launched several months ago, and since then more than 75,000 subjects have enrolled in mobile health studies related to asthma, Parkinson’s Disease, diabetes, breast cancer, and heart disease. In some cases, a smartphone enables a level of precision and convenience that patient testing within a facility cannot offer. Consider one diagnostic used in the Parkinson’s Study and described by the lead researcher, Dr. Ray Dorsey, of the University of Rochester Medical Center: “One test […] measures the speed at which participants tap their fingers in a particular sequence on the iPhone’s touchscreen. [That’s] more objective than a process still used in clinics, where doctors watch patients tap their fingers and assign them a numerical score.”

The ResearchKit concept is powerful because it enables patients to contribute to medical research in a more convenient way. The barriers to participation in research studies – inability to take time off work or travel long distances – are significantly diminished. For lower-income and sicker people, who experience these barriers most often, such technology could facilitate more representation in important medical research studies.

Healthcare technology, and the mobile and wearable health space in particular, is receiving an enormous amount of attention and funding. The excitement is warranted – our ability to collect and analyze data is advancing alongside our understanding of biomedical diseases, treatments, and the social and economic factors that influence them. While the free market should reward those who invent the next cool thing, we also should not discount the potential of this technology to make a different in places where it is needed most.

This article was originally written for and published by by Healthcare Demystified, the healthcare policy and innovation blog of Healthcare.com, where I am a weekly columnist.

Since 2008, the government’s healthcare focus has been to help uninsured people find coverage. However, a new problem has emerged with devastating consequences for everyday Americans. More than 30 million people in this country are underinsured, meaning that their out-of-pocket costs exceed 10 percent of their income. That means that almost one quarter of the non-elderly, insured population is in a situation where their medical bills are a financial burden – the kind of burden that insurance is supposed to take care of in the first place.

Although the level of underinsurance has risen since 2003, the Affordable Care Act (ACA)’s broad efforts to reduce uninsurance might actually make this underinsurance problem worse: the new plans sold on the marketplaces often have lower up-front premiums in exchange for higher deductibles (out-of-pocket costs) when patients seek care. The lower the metal level of the plan (i.e. gold, silver, bronze) the higher the deductible. Patients who select silver and bronze plans in order to have affordable premiums are often unable to afford the higher deductibles that come up down the road. Most of the time, patients do not realize that they are making this trade-off until the medical bills arrive after an expensive hospital stay or specialist visit.

People are more or less likely to be underinsured based on the kind of insurance plan they have. It would be natural to think that most underinsured people have Medicare or Medicaid plans, but a survey from The Commonwealth Fund found that 59 percent of people who are underinsured have employer-sponsored coverage. Put a different way, a full 20 percent of people who have insurance through their jobs are underinsured. This fact goes against the conventional wisdom that people who have insurance through their employer have adequate coverage.

The level of underinsurance among people who have employer-sponsored insurance has doubled since 2003, but those who purchase individual insurance coverage have become even worse off. Individual plans in the past were all purchased directly from an insurance company or broker, but now the plans are often found and purchased through an marketplace under the ACA. This group has seen its rate of underinsurance more than double since 2003, from 17 percent in 2003 up to 37 percent in 2014. While this group is small, the need for more adequate coverage is great.

What are the consequences of lower quality coverage? Recently a Gallup poll showed that one in three people has “delayed medical treatment for themselves or a family member due to concerns about cost” – a level not seen in 14 years. The Commonwealth Fund has found that, among these 30 million underinsured people, 26 percent skipped a test or treatment and 24 percent did not fill a prescription due to the cost. Making matters worse, people are going into medical debt: half of underinsured beneficiaries report debt of $4,000 or more.

The health and economic costs of underinsurance are even greater among those with chronic conditions. The Commonwealth Fund report found a 30 percent rate of underinsurance among people with chronic conditions – compared with just a 16 percent rate of underinsurance among healthier people. 24 percent of these underinsured, chronically ill patients report avoiding to fill or take a prescription medication – compared to just 7 percent of well-insured adults who also had chronic illnesses. These gaps between underinsured and well-insured people are significant and have persisted, even widened, over the last decade.

It is important to keep in mind that we have been talking about individuals with year-round insurance. The problems related to financial access and the cost of care are magnified for those who are uninsured. And while the number of uninsured is dropping under the Affordable Care Act, the newly insured people are not guaranteed full protection.

Consider the story of Karen, a 55-year-old single woman with two grown children. She lost her job at an advertising firm during the recession and had been uninsured for five years – until the second window of open enrollment in the fall of 2014. She has been earning enough income through freelance work that she does not qualify for Medicaid, but she is close enough to the federal poverty level to receive a subsidy to purchase coverage on her state’s new insurance marketplace. Priding herself on her deal-finding skills, she chooses a plan with a low monthly premium that still seems to provide decent coverage.

Three months after signing up for coverage, Karen visits her primary care physician and learns that she need to switch from the current diabetes medication she is taking to a more powerful, more expensive version to manage her blood glucose level. Undeterred by the extra expense because of her new insurance, she visits the pharmacy to pick up the prescription. She discovers that her plan only covers half of the cost and that, because of her deductible, she will have to pay more than one hundred dollars per month. Now she has a difficult choice between starting the new prescription – and therefore not being able to take as many trips across the country to visit her grown children – or sticking with her current, less effective medication.

While Karen’s story is made up, it is illustrative of the small but significant economic, social and health impact that underinsurance can have on the lives of everyday people.

The issue is starting to attract more attention, especially from Democrats, heading into the 2016 presidential election season. Rep. Jim McDermott (D-Wash) said: “We’ve got some 17 million more people covered … but they can’t access the care they seem to be entitled to. It costs too much to use the care. That’s the deceptive part about it.”

Along the same lines, the New York Times’ Aaron E. Carroll wrote: “In the quest for universal coverage, it’s important that we not lose sight of ‘coverage’ in order to achieve ‘universal.’ The point of improving access is, after all, to make sure that people can get, and afford, care when they need it.”

The consequences of underinsurance have made it more important to ensure that all consumers understand their insurance plans, from knowing the difference between monthly premiums and out-of-pocket deductibles to knowing their options when faced with a large medical bill. State and federal marketplaces, as well as insurance companies, can and should put more effort into helping people select the right plan for their health needs and financial resources. That is a goal that will benefit all stakeholders – providers, payers and patients – in our healthcare system.

This article was originally written for and published by Healthcare Demystified, the healthcare policy and innovation blog of Healthcare.com, where I am a weekly columnist.

Imagine this scenario: an elderly woman, Mrs. Jones, is rushed from the nursing home to the hospital one evening. Although she has been in and out of the hospital four times in the past year, this situation is more serious. She has chronic congestive heart failure and the physician believes that she will not survive long without a heroic intervention. If the procedure fails, though, Mrs. Jones could end up needing permanent life support in order to stay alive.

Her children are called in from across the region and are gathered at the hospital within two hours. The decision needs to be made quickly, but none of the children in the room – some of whom have not seen each other on a regular basis in 10 years – are quite sure of what their mother would want if she were conscious and not under a medical coma. Some advocate for doing whatever is necessary to extend her life, while others think she would want to “go with dignity” and receive hospice care in her final hours.

These conversations are happening in emergency rooms across the nation. Many times, families will go through this experience several times with an aging loved one. Decisions around care at the end of life have never been simple, but in recent decades they have taken on new importance as we have devised new methods to prolong life. These methods bring high cost and sometimes diminish quality of life in return.

Consider this stunning fact: one in three Americans has been forced to make a decision about whether to keep a loved one alive using extraordinary means. These measures are seldom in accordance with patient values or preferences – most patients want to die in their homes, but most end up dying in the hospital – and the medical world is asking itself tough questions: who decides what happens in these life-and-death matters, and how should the complicated web of decisions be navigated?

Even more important, though, is to have conversations with family members and doctors to get on the same page before a crisis emerges. According to the Conversation Project, a non-profit wants to encourage and facilitate end-of-life dialogue, 90 percent of people acknowledge the importance of having end-of-life conversations but only 27 percent do so.

I spoke with Ellen Goodman, who is the co-founder of the Conversation Project and a former Pulitzer Prize-winning, nationally-syndicated columnist for the Boston Globe.

“Death no longer comes in a way we used to think of as natural,” she says. “Instead, it comes with a cascading number of choices and decisions. We believe that the first step is to have these conversations with the people you love at the kitchen table.”

Goodman and her team put together a “Conversation Starter Kit” that guides patients and their families through these difficult discussions. The guide asks general questions – “What matters to me at the end of life is…” – and becomes more specific about the patient’s preferred place of care (hospital or home), desired length of life-sustaining care, and more. Over 200,000 people across all 50 states and in 176 countries have downloaded the starter kit.

While these conversations are vital to have with loved ones, Goodman sees a disconnect between patients’ convictions and the healthcare delivery system. She hopes that the starter kit could be used during wellness visits. “Doctors, at this point, have no training in these conversations and are universally uncomfortable with them. It’s important that doctors get paid for talking and not just for procedures. If you’re paying doctors to do these 900 different things, procedure after procedure, who talks about when enough is enough? It’s only right to encourage doctors to know how their patients feel: when they want extreme measures and when they want to limit them.”

There are options for families who want to have these proactive discussions and help elderly family members receive care that is consistent with their values. The most common method is through an advance directive, also known as a living will.

The living will is a legal document that spells out how a person wants to be treated if he or she is unable to make decisions for him or herself – for example, while in a coma, on life support, or with brain damage. However, family members and caregivers might make decisions in the hospital without adhering to a living will, if one even exists, due to miscommunication or because the patient’s wishes for the situation at hand were not detailed in the living will.

Ellen Goodman emphasizes the importance of a “health care proxy”, which is someone who is empowered to make appropriate decisions on behalf of a relative or close friend. “There’s no checklist on Earth that can cover every medical possibility for someone who is facing serious illness. There just isn’t. So we have to find somebody who understands what matters to us and understands our values, and the conditions under which we want extreme measures and the conditions under which we don’t,” says Goodman.

Surveys indicate that many people, especially those who are not yet old, have not created living wills. In 2014, a representative survey with nearly 8,000 respondents indicated that just over a quarter (26.3 percent) of Americans have prepared such documents. Despite these low levels of planning among young people, three quarters of older Americans have made advance directives. The number has grown considerablysince 2000, when less than half had done so. However, that still leaves a significant minority who have not formally expressed their wishes.

The movement to make these conversations more normalized and accessible for patients was hampered in 2009 by the “death panels” label that was applied to a proposal to fund end-of-life conversations between Medicare patients and their physicians. However, some new efforts are emerging: the Centers for Medicare and Medicaid Services (CMS) has proposed a plan to fund unlimited end-of-life care conversations for patients and their caregivers – not just physicians, but nurse practitioners and assistants as well. The agency expects to release final rules for the benefit in November.

CMS’ chief medical officer, Dr. Patrick Conway, said that end-of-life conversations are “an important part of patient- and family-centered care” and said that the program would not just fund one conversation, but as many as necessary to help patients and their providers work through such a sensitive topic of discussion.

The emphasis on improving the process to be more patient-friendly, provider-friendly and useful is important. Living wills have been around for almost 50 years, but the format and purpose of these documents has evolved as the general public and the healthcare industry become more familiar with them. Recent efforts have sought to help living wills wield more influence over actual care provided in the final stretches of life.

The answer, some say, has arrived in a form called POLST, which stands for Physician Orders for Life-Sustaining Treatment. The form covers the patient’s values, beliefs and care goals along with the physician’s diagnosis, prognosis and treatment options. Filling out the POLST form, which is a collaborative effort between a patient and physician, creates a medical order that becomes part of the patient’s personal health record.

The form is simple to understand and fill out (see California’s POLST form here), but it goes into enough detail to provide an authoritative guide for future care decisions. And critically, the form captures cultural and religious beliefs that are central to the way in which patients make decisions about life-and-death matters. However, POLST has a limitation: it is only for people who have already been diagnosed with a serious condition.

Even with all these new programs and approaches, there are some coordination gaps to resolve. “If you have an advance directive in one state and you get sick in another state, it may not be shared and known,” Ellen Goodman points out. “In fact, if you have an advance directive in one healthcare system and you get sick in another healthcare system, it may not be known. There have to be ways of having those directives available when the time comes.”

We must do more to align patients’ values and wishes with the treatment they end up receiving. That means making it easier for patients and their families have end-of-life conversations and to document the wishes in a medically useful format that follows the patient across care settings – and across time, as patients’ values can change as the end of life approaches. Anything short of that future state will add to the level of physical pain and emotional stress endured by patients and their families during the most vulnerable and sensitive moments of their lives.

“We need to realize that Americans face the healthcare system with two conflicting fears: one is that they won’t get the care they need and the other is that they’ll get care they don’t want,” says Goodman. “Let’s put the patient at the center of this conversation. By listening to that person, we will be able to have their wishes expressed and respected.”

Goodman is right. Through listening, understanding and encouragement, we can make the end-of-life care system work for everyone – patients, families and clinicians.