The following post appeared last week on the Get Better Health Blog:

President-elect Obama and Secretary of HHS designate, Tom Daschle, invited concerned Americans to discuss healthcare reform in community groups across the country. My husband and I hosted one such group at our home in DC yesterday. Although we had been instructed to compile a list of compelling stories about system failures – instead we decided to be rebellious and discuss “what’s right with the healthcare system” and compile a list of best practices to submit to the change.gov website.

The event was attended by a wide range of healthcare stakeholders, including a government relations expert, FDA manager, US Marine, patient advocate, health IT specialist, transportation lobbyist, real estate lobbyist, health technology innovator, Kaiser-trained family physician, medical blogger, and EMR consultant. Here is what they thought was “right” with the healthcare system: (more…)

In the spirit of President Elect Obama’s/HHS Secretary Designee Tom Daschle’s efforts to mobilize a grassroots “get out the health” series of house parties, I am re-posting my first Disruptive Women post:

My Top 10 Priorities for the Next HHS Secretary (NOTE: this was written prior to the selection of Tom Daschle–not surprisingly, I was holding out hope for a woman–no offense to Mr. Daschle):

The next Secretary of the US Department of Health and Human Services (DHHS) will have a plate that is not only full, but is overflowing. While all the political rhetoric is focused around access—health insurance for all—there are a number of other critical areas that need immediate attention as well.

Clearly there are many more than 10 priority areas. However, if I just so happened to find myself sitting across from the next Secretary of HHS, I would remind her (just indulge me on that) that she is the Secretary of Health AND Human Services—that for her to make a dent on the health side of things, she must take into account whether people have: the support systems they need, heat, a home, transportation, enough to eat.

Here is my list of the top 10 priorities, in no particular order:

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Two reports recently released by the Congressional Budget Office, Key Issues in Analyzing Major Health Insurance Proposals, and Budget Options, Volume 1: Health Care, have dominated discussions this week.

Jane Zhang of the WSJ reported:

The Congressional Budget Office analyzed 115 options to change health care, some costly and others that would save the government and consumers some money.
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Among the findings:

- If no changes occur, CBO says health care spending will rise to 25% of GDP by 2025 from 16% last year.

- If the federal government required all employers with more than 50 workers to provide insurance or pay a penalty, federal revenue would increase by $13 billion in four years and $47 billion over nine years.

- Allowing non-federal workers and companies to buy into the Federal Employees Health Benefits Program would cost the federal government about $2 billion over four years and $6.2 billion over nine years.

Ezra Klein explained the importance of these reports and the impact they could have on healthcare reform plans:

How do we decide how much a government program costs? It’s an essential question. Programs need prices, because the government has to produce a budget. But pricing legislation in advance is impossible… But you still need a number. So Washington operates amidst a tacitly agreed-upon imprecision. What the CBO says, goes. “In this town,” says Henry Aaron, a senior economics fellow at the Brookings Institution, “it’s not infrequent to hear people say it doesn’t make any difference what it really costs. It only matters what CBO says it costs.”

The books that the CBO released this week are essentially a guide to the CBO’s scoring process. They tell congressmen, in advance, how the Number will be built. The Wonk Room and The New York Times are focusing on the equations. But they’re not what’s changed. Rather, the difference is that Congress knows what they’ll be in advance. The scoring process will still be a minefield, but now legislators will have a map. There won’t be a situation analogous to 1994, when the White House was shocked by an unwelcome assumption and their legislation was mortally wounded by a staggering price point. Obama and his allies in Congress, along with Orszag’s help, will be able to build a bill able to survive the scoring process. They can, effectively, decide their own Number.

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When the Congressional Budget Office released their “Health Budget Options” report last week, I eagerly scanned through the tome for recognition and support for caregivers—like myself—of people with disabilities or chronic health conditions. We’re mentioned in a parenthetical in Chapter 10 on Long Term Care:

“(Much long-term care is provided personally by the family and friends of elderly and disabled individuals.)”

Earlier in the chapter, CBO points out that patient/family out-of-pocket spending accounted for 20% of the total long term care spending. While one-fifth of spending is a lot, I think it probably underestimates the full value of direct care provided by the family, purchases of needed non-prescription and non-reimbursed medical equipment and supplies, and lost income by the caregiving family members.

CBO does make some oblique references to the magnitude of unaccounted-for care in its discussion of the pros and cons of adding home-based care incentives to Medicaid—the dreaded “out of the woodwork” factor—the number of people they cannot count who might come forward for services and wreck federal-state budgets. (more…)

The holidays are upon us, and we all know what that means for health issues — besides higher sugar and alcohol intake. That’s right, healthcare reform house parties! Check out the message from HHS Secretary nominee Tom Daschle below, and learn more about hosting or attending a healthcare community discussion over the holidays.

Meanwhile, four issues dominating discussions around the web this week are the future of the FDA, the new Nursing Home Compare rating system and web site, physicians and health IT, and of course, healthcare reform issues.

At the Center for Medicine in the Public Interest DrugWonks blog, Peter Pitts shared his recommendations for reforming the Food and Drug Administration:

I was honored when the Obama FDA transition team called and asked for my advice on how the incoming administration could make the agency a more robust and forward-looking regulatory instrument.
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My suggested areas of focus are

1. A strong, science-based FDA
2. The Reagan/Udall Foundation — a Partnership of Unequals
3. Clarity vs. Ambiguity
4. Information Management
5. Food Safety and Security
6. Risk Communications
7. The Drug Label and the “Safe Use” of Drugs

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There are, obviously, many, many other important issues … and I look forward to working with the transition team to ensure that the new commissioner can hit the ground running… And kudos to the Obama transition team for reaching out to a wide variety of groups.

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Transforming health through genetics. That is the mission of the organization I lead - Genetic Alliance.  Almost 5 years ago I took on the leadership of this organization.  I had some strong inklings at the time, about transformation, about health.  While I was developing Genetic Alliance’s path to transformation, both internally and externally, with some phenomenal colleagues, the world around us was changing in similar fashion.

I sometimes see genetics as a leading edge, a knife that is cutting through the old, crusty, barriers.  It does this perhaps because it is new, but after leading with the novel edge, it has a great deal more punch.  I believe it will be an innovative disruption (a la Clay Christensen) because the health care system will not be able to adjust enough to fit its value inside the system (or lack thereof).

Starting with the power of understanding family history (still perhaps the most powerful genetics tool) to the sophistication of personalized medicine (using genetics and genomics to tailor diagnosis and treatment), genetics and genomics will both buoy and stress an overstressed healthcare system.  It is time for change.  It is in the works, on the drawing tables and in people’s hearts and minds. (more…)

I hope you a great Thanksgiving holiday weekend!

I recently moved and so cancelled my usual vacation to unpack boxes and get settled. I’ll vacation later. The move delayed more than vacation, however. It also delayed my getting a flu shot, I’m still inside the “window” during which I may not yet be protected by the vaccine and I know that few people I meet are likely to be immunized and therefore any “herd immunity” I might count on to stay healthy is not there either. Sunday afternoon arrived with a feeling I dread….”like maybe I was coming down with something.”

It brought back memories of the first Thanksgiving I learned to cook a turkey. I was ten, my Mom got the flu. Not the just-don’t-feel-good flu we all mistakenly call every winter symptom, but the for-real-very-sick-can’t-lift-her-head-off-the-pillow influenza. Step by step, she talked me through how to make the dressing, stuff the bird and cook it.

That experience showed me what flu can do to a person. Since then my public health experience showed me what it can do to a nation. As a result, I’m an enthusiastic promoter of flu – and other – vaccines. (more…)

Given the historic opportunity to lead the nation as it transforms to a nation that is about to become a majority of current minority populations, President Elect Obama and his Transition Team, announced this week, should consider identifying a diverse leadership among the political appointees in the health related positions–not just HHS, VA, DOD, but at the White House-–to develop a realistic transformation in the health care reform policy making process. There is a critical need to consider health care reform that allows the health system to become more responsive to the new America with cultural competence and literacy as well as including issues based on the social determinants of health. The President-Elect plan for access to care and quality health care that addresses health disparities is a vision needed sooner than later in order to prepare for the changing population. And of course, the health of minority women and their families needs to become a priority item as the policy making starts after January with the attention to helping them through SCHIP, Medicaid and Medicare.

So-called “medical homes” are finally receiving national attention from the Centers for Medicare and Medicaid and foundations after their purported inception over 30 years ago by pediatricians (home care nurses have been coordinating health care for people with chronic illnesses for more than a century). But we’re about to make the same mistake that we’ve made in developing other approaches to improving health care nationwide—we’re medicalizing it, instead of focusing on health.

Medical homes are proposed to be primary care practices where people can get help with coordinating their care, particularly for chronic illnesses. The U.S. health care system emphasizes specialty practice rather than primary care. It’s one of the reasons why we pay more than any other nation for health care but have outcomes that lag behind those of even moderately developed nations. If I have diabetes and heart failure, I go to one specialist for treatment of my diabetes, the cardiologist for my heart failure, the gynecologist to get my annual GYN exam, a podiatrist, a retinopathist or ophthamologist, a dentist who may prescribe medications before and after procedures, a shrink to help me cope with this mess, and possibly others to screen my various body parts for myriad diseases. Each is prescribing medications that may interact in adverse ways. In fact, I may end up with a costly hospitalization because of these adverse effects. No one knows all of me or focuses on my overall health—unless I have a primary care provider who can oversee all of these specialties, follow all of my treatments and medications, and coordinate my care. (more…)

Like many Americans, I am still trying to wrap my mind around the shifts and changes wrought in our country on November 4, 2008. We will all be at it a while, I think. One dimension haunts me as a nurse: we elected a president who calmly stated “I think health care is a right”.

As a young nurse I repeatedly tried to understand why education, fundamental K-12, was considered a given in this country, yet health care was something one not only had to negotiate for but indeed was being systematically subjected to the vagaries of markets, profit motives, shareholder demands, and the overt “rankism” of our society. (more…)

Last Monday, Stephanie Mensh wrote about her experience with medical homes. Dr. Pamela Mitchell, President of the American Academy of Nursing, has provided Disruptive Women with another perspective.

Guest post by Pamela H. Mitchell, RN, PhD, FAHA, FAAN

There is much talk these days in health professional, health payer, and even legislative circles about the “medical home.” This is a term coined in 1967 by the American Academy of Pediatrics. The medical home was originally meant as a single place for a child’s medical record and was particularly salient for children with special care needs. It later expanded to denote the one place that families with children with special care needs might obtain coordinated, continuous, family-centered and culturally effective care.¹ The concept of a medical home has additional roots in recognized needs for care coordination for people with chronic illness in managed care, case management, disease management and comprehensive discharge planning for complex or chronic illnesses. Most recently, a coalition of the American Association of Family Practice, American College of Physicians, American Academy of Pediatrics, and American Osteopathic Association developed and disseminated “Joint Principles of the Patient-Centered Medical Home.” This document defines the Patient-Centered Medical Home (PC-MH) as “an approach to providing comprehensive primary care for children, youth and adults. The PC-MH is a health care setting that facilitates partnerships between individual patients, and their personal physicians and, when appropriate, the patient’s family.”¹ At its best, this new movement promises quality, coordinated care for people, rather than their diseases. Further, it recognizes that care coordination and management is a complex skill that deserves payment in our current payment system. However, because of the consistent emphasis on physicians as the home “owner” and leading partner, it connotes care centered in a particular practice profession rather than care for the person or family who comes “home.”

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A Medical Home may be coming to your neighborhood soon—and it’s a welcome first step to help consumers and caregivers coordinate complex medical services for family members suffering from chronic, debilitating diseases. CMS will be hosting a public telephone “Open Door Forum” on October 28 describing Medicare’s new Medical Home Demonstration Program, set up by 2006 Medicare legislation, aimed at recruiting primary care physicians and local health clinics to sign up when the program begins next year. (more…)

Regulate–deregulate. Can we really solve the crises in the economy and health care by doing one or the other? Is it really so simple?

I’m not an economist, but I am a nurse and journalist who can tell you that regulations in health care serve to protect the public. They can also get in the way of better care.

Consider the story of Dr. Meridean Maas, RN, and Dr. Janet Specht, RN, two advanced practice geriatric nurse specialists who had extensive expertise in long-term care of people with dementia. Based in Iowa, they realized that the facilities where they had worked were not places in which they would put their own parents. They believed they could provide a better model of care and decided to prove it. They took out a loan for $350,000 and a received a grant from the Iowa Development Corporation to purchase a ranch-style home with acreage that they called Liberty Country Living. They created a home-like atmosphere for people with dementia who dressed in their own clothes and could walk the fenced-in property without fear of becoming lost. Staff ate with the residents and got to know their interests and backgrounds, often encouraging the residents to engage in activities that held meaning for them. Family were told to come any time and supported in being with their loved ones as much as possible. (more…)

As working professionals with decades of experience in health care, we face several workplace challenges, including co-workers from different (often younger) generations and retirement plans crumbling in this era of economic downturn. As mothers we face the dynamics of child birth and the hair pulling dilemmas of child raising. But it is as baby boomers who are part of the sandwich generation, that I think we are experiencing hurdles more difficult than contemplated. For me, front and center has been the need to confront care planning and end of life decisions for family members living hundreds of miles away. (more…)

The current state of health care systems in the United States is not accidental. It has a history and that history counts. Though there are many dimensions to that history, some that fly under the public discourse radar are worth exploring. I want to share my thoughts about a few of these “elephants in the room” that haunt me. This is not an exhaustive report; it simply highlights one of many processes that set the stage for the current conditions in health care today. I will be writing about other ones…

Some social commentators called the 1980s the decade of greed in the United States. I thought it was more accurately a cultural drift where greed was confused with success, embraced as a worthy motive. It was not the Baby Boomers finest hour, or decade for that matter. Just ask their offspring who are inheriting the inevitable results of this greed.

This drift was in part shaped by a conviction held by many that the free market could and would correct itself, even in the context of a complex emerging global economy. (It seems self-evident to note that the last few weeks beg to differ). This worldview created the conditions for the 90s where health care systems, seeing health care reform deep-sixed early in the Clinton administration, drifted toward a cost-containment marketplace mentality. (more…)