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…)

When I was at Pfizer, I worked with colleagues at NHGRI and FNIH to form the Genetic Association Information Network (GAIN) — a public-private partnership that encourages industry and academic collaboration to better understand the genetic basis of common disease.

At the final GAIN analysis workshop earlier this month, we were given the chance to review data generated over the last two years, including disease studies of psoriasis, depression, schizophrenia, diabetic nephropathy, and bipolar disorder. It was exciting to see that each study identified important regions of the genome associated with these diseases. Unfortunately we also learned that neuropsychiatric diseases remain a challenge as the search for genetic variation and diseases is hampered by the complexity of the phenotypes involved, as well as the apparent diversity in genes which contribute to the diseases.

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Being a disruptive woman in health care feels very different today than it did yesterday.  I am shocked at the difference.  I did not expect it.  Even while I knew that the election would be significant, I could not have predicted the seismic shift within me, my family, my friends and my organization.

Yesterday, I would have written about the wonderful sense of camaraderie I feel with the other disruptive woman in this blog and beyond.  I would have written as someone in exile, who must fight the revolution to be heard, to make a difference.  I would have written feeling very much ‘other’-ed by the mainstream structures in health.

I imagine that this grew out of being the mother of two kids with a rare condition that the world might never recognize as important, or work to mitigate, except for the work our disease advocacy organization has done.  One could postulate that the other-ness was a product of being a fish out of water in the health care community – I come to it simply as a consumer, no science degrees, no elected career in this field – simply the mission to ‘transform health through genetics’ – the mission of Genetic Alliance, of which I am a part.  I knew some of my otherness was a result of feeling that the current administration doesn’t care about health care the way I think it should. (more…)

“Drugs don’t work in patients who don’t take them.” This quote, by the former Surgeon General, C. Everett Koop, M.D, appeared in a New England Journal of Medicine article on drug therapy and adherence.

There are many reasons (cost, inconvenience, forgetfulness, unpleasant side effects) why patients don’t take their medicine. Medication adherence has become an issue of great concern within the health community, especially as we get older as a nation. So in this spirit, Verizon recently launched what it refers to as the Pill Phone — a new technology that allows people to make sure they keep to their medication regimens and help family members keep to theirs.

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It’s ironic to me that while Congress was busy twisting itself into a political pretzel over privacy, which ultimately—once again—caused the defeat of a much needed piece of legislation ushering in electronic medical records, 10 brave souls volunteered to let it all hang out at Harvard, and on the Internet.

I’m talking, of course, about the groundbreaking new venture known as the Personal Genome Project, led by Harvard genetics professor Dr. George Church. The project, which launched this week with 10 volunteers calling themselves the PGP-10 (including technology VC extraordinaire, Esther Dyson), is looking to speed medical research by doing away with traditional privacy precautions.

For the participants, the quid pro quo of having their DNA decoded involves putting their information on the project’s website—for all the world to see.

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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…)

If you don’t, you may want to seriously think about creating one. I am. I’ll admit it, at first I was skeptical, but the more I see the benefits of virtual worlds, the greater the value and potential I can see for health care.

An Avatar, as Wikipedia notes, is “a computer user’s representation of himself/herself or alter ego.” (Hmmm, wonder what Joe the Plumber’s avatar might look like)…

Avatars are used in virtual worlds like Second Life and Whyville. (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…)

Guest post from Alexandra Carmichael

Open source has emerged as a powerful set of principles for solving complex problems in fields as diverse as education and physical security. With roughly 60 million Americans suffering from a chronic health condition, traditional research progressing slowly, and personalized medicine on the horizon, the time is right to apply open source to health research. Advances in technology enabling cheap, massive data collection combined with the emerging phenomena of self quantification and crowdsourcing make this plan feasible today. We can all work together to cure disease, and here’s how. (more…)

I believe there are two distinct reasons why medical innovation is threatened in our health care system in the US.

First, I strongly believe that the misaligned payment systems drive inappropriate treatment choices and delivery. This includes differentials in payment by site of service and separate physician payments for procedures that cause inappropriate utilization.

Second, health care policy makers, out of touch with coverage and payment systems, do not truly understand how medical technology fits and is adopted within the framework of coding and coverage systems. It causes manufacturers to force fit new technology into payment and coding systems that have no reflection on true costs or value… To address either explosive volume or costs of a new procedure or service, technology is subject to a threshold of payment and coverage criteria that ultimately causes a true disruption in innovation and dissemination of medical breakthroughs. (more…)

Since becoming CEO of the American Academy of Nursing, I have been inspired by the nurses and other health care providers that have seen health care challenges in their communities and created cost-effective solutions that improve health outcomes.

For example, under the direction of Margaret Grey, DrPH, RN, FAAN, nurses associated with the Yale School of Nursing have provided coping skills training to youths and their families suffering from type 1 diabetes and at risk for type 2 diabetes for more than 12 years.

Or take for example, the Eleventh Street Family Health Services, which serves families who live in public housing developments in the Philadelphia area. Fifty-seven percent of patients are covered by Medicaid and 33 percent are uninsured.

Or in Kentucky, Kay Roberts, EdD, MSN, FAAN offers weekly hypertension management clinics and classes for self management of chronic illness. Since opening its doors in 2003, the clinic has prevented unnecessary hospitalization in approximately 25 percent of its clients with chronic illness and reduced the cost of primary care by more than 50 percent for each client.

Americans are known for their creative and innovative spirit, and as policymakers reform our health care system, they should closely examine what is being done by various health care providers across this country. When they see models that work policymakers should examine why they are successful and encourage the implementation of these models in communities facing similar problems.

True health care reform has already been set in motion by nurses and other health care providers on the ground and in the field working tirelessly to help Americans stay healthy. It is now time to scale up and spread these initiatives.

Ah, US healthcare. It is rather a shocking question to ask what we might preserve, encourage or replicate. But it is an essential systems-level question, because if there is nothing to name (which might be one’s first reaction), then there is probably no realism in the idealism many of us have for change.

I struggle to name something to preserve. I don’t even like the word – it speaks to me of mothballs and museums. Or perhaps that is what we should intend, let’s put the antiquated systems, the major gaps and disconnects, the huge disparities and inequities in mothballs. Let’s preserve them in a museum, to remind ourselves of what a mess we made of it. And let’s disconnect them from the whole, so they cannot damage it any further.

I heartily encourage innovation in healthcare that takes advantage of strong social trends: the Long Tail, social networking, the generosity of information sharing in programs from large to small. We have examples in the Human Genome Project and Facebook Causes. I encourage the most imaginative and disruptive of the current systems to grow in influence, and for us to provide systems around them so they can flourish. Some of these systems are on the ground, in the new space created by imaginative solutions. They are affinity groups, community-based organizations, and consumer-directed projects.

This leads me to what we should replicate. We should replicate the successes, but not without a critical eye to the future. Looming before us are not only dysfunctional systems, but also vast amounts of information, new technologies, and phenomenally creative minds. The systems, programs, and projects that are working need to be proactively attentive to the future, and need not to fall into the trap of complacency, competition, and territorialism. We need to replicate the disruptive innovation that has been a hallmark of good work in the world since the beginning of time. We must look for leadership that has blown open the doors and transformed systems; and replicate not their work, but their ability to identify places where potential energy is waiting to be transformed into kinetic energy.

I say to the new President and Congress: your task is not to play the hero leader, but instead to discover how to unleash the full potential of the people – from the community leaders, to the heads of companies and agencies – by keeping your eyes on the prize in all cases, and witnessing to the deepest truths. Dissolve boundaries, and we will all be freer to lead.

Leaders have a particular burden, and all too often it is mistaken to be one of power and perfection. It is about authenticity, about community, and about compassion. That, with decisive action, measured against the ultimate goals, will transform health.