Life Isn't "House" But Can We Be Patients Like Those on TV?

Any patient will tell you: it doesn't really work in real life the way it works in medical dramas on TV.

If we were all TV patients, we'd have had "the pads" applied to revive us a la "ER." We'd get house calls like in the days of "Marcus Welby." Or, we'd have turned medical care over to a narcotics-addicted poor communicator, who is also an unconventional medical genius, like in "House."

"House," which began its sixth season last week, tackles medical mysteries unlike any other health care provider. What makes "House" such great television is that, really, the kind of medicine practiced by Dr. House and his colleagues is the kind of medicine seriously ill patients need -- and crave: aggressive, no-holds-barred, and outcomes oriented. But, that would never work in the real world. House would have already been sued, lost his malpractice insurance, and had his license yanked before the first commercial break.

But the larger point of "House" is an important and often overlooked one: when patients that need answers with no time to spare, they are open to exploring all options. Those patients let their doctors get creative and focused. The challenge in applying this to medicine and research is that answers don't always come so easily.

In the real world, medical solutions need to stem from basic research discoveries efficiently funneled into a development pipeline that leads to accessible treatment options. That sounds complicated and wonky -- and it is. But, there is a system in place. No one, except maybe Dr. House, is advocating an unfettered, uncontrolled system of science run amok. But, is there something instructive in this manner of thinking? For example, something like maximizing the patient's potential to be part of the process.

It's just not on TV that patients are willing to undergo treatments or procedures to save their own lives that they wouldn't necessarily make if they were healthy. Getting a diagnosis is obviously a game-changer and takes this discussion from the theoretical to real life. Many of us have seen this in ourselves and in our loved ones.

In the real world, the average patient with a deadly or debilitating disease isn't likely to wind up in an office akin to that of Dr. House's. Instead, these patients enter a system that has to rely on what medical research has to offer, and can often only address symptoms, but cannot fix the cause. Patients are often left to manage their care in a complex web of different specialties, and most likely, without the benefit of something as basic as an electronic health record to help keep track of it all.

Every day, doctors diagnose patients with Parkinson's disease, or leukemia, or restrictive cardiomyopathy. These can be diagnoses that send patients and their loved ones on a journey that we don't want to go on. In some cases the message can be a very clear message: Get your affairs in order, because medical science has very little to offer you. In my father's case of acute myeloid leukemia, his oncologist told him he had three to six months to live. He died six months from his diagnosis.

Why do we accept this? How can we accept this? And, what can we do about it?

We need a system that creates a seamless and continuous loop from the provision of health care to the development of health cures.

A health cures system would allow the use of data from health care practices to bolster the medical and health research.

The very culture surrounding research and practice needs to change. Currently, the National Institutes for Health (NIH) is the world's largest funder of biomedical research. With Dr. Francis Collins at the helm, there's much to look forward to.

Already, Collins has spoken publicly about finding a balance between basic and applied research, the need to enhance NIH's role in comparative effectiveness (the science behind what works) as well as the importance of translational research (translating research into practical, real-life uses.)

On Wednesday, President Obama visited the NIH to talk about the great new influx of funding that NIH received as part of the stimulus bill. It is vital that this new funding be invested in effective and innovative ways that moves medical research quickly into actual health care.

At my organization, FasterCures, our name conveys our view on this. We want to work with Dr. Collins to make fundamental changes to the culture that supports medical research to accelerate progress and sustain a higher speed in the pursuit of cures.

The way we see it, progress too often stalls. In order to move forward, all the pieces of the cure puzzle need to come together to overcome obstacles. This includes academia, the commercial sector of biotech and pharmaceutical companies, and medical research foundations. We are taking a step by bringing all of these parties together to forge strategic new relationships December 1-3 for our inaugural Partnering for Cures conference in NYC. However, all of their work is for naught if we lose sight of the most important of all stakeholders in the research enterprise: patients.

Patients, their families and their advocates should be engaged and empowered to demand more from the medical establishment, on both the clinical and research ends of the spectrum. Patients need to know how they can contribute. They should be ready and eager to partake in clinical trials when appropriate and donate biospecimens (a scientific word for anything from DNA to blood) when needed. They have to be part of the loop. After all, isn't this what our health care and health cure systems are about?

We often read and hear about medical breakthroughs. But, too often it takes nearly two decades to translate these discoveries into effective treatments for patients. Why, we must ask (and ask before we become patients) does it take so long, and how can we break this cycle? And, we need to know the role patients can play in accelerating the process of discovering cures.

When patients and families are faced with potentially life-threatening diseases and running out of appropriate options, when the consequences of inaction are measured in life or death outcomes, something primal kicks in. That instinct could possibly be the most powerful agent of change one can hope for. It's time to explore all options -- this time, off the screen. It is time for faster cures.

Comments

[PlaceboStudman]

I've been incredibly fortunate in that, in 36 years of living with a chronic illness, Spina Bifida, I've actually run across my fair share of Dr Houses. These guys are great, and we do need more of them. We need doctors who aren't afraid to try and experiment and explore "strange new worlds" in Star Trek terms.

But, sadly, what we would need to train those doctors is more patients who have nothing to lose by "boldly going where no one has gone before" (sorry for the Trek references, they seem apropo). We need patients who trust themselves as much as they trust their doctors, and who trust the system enough to say that it is better to have failed a new and exciting treatment that didn't work for you, if it can be proven to be worthwhile for someone else.

What works for one person doesn't always work for anyone else. But, if you don't try, you'll never know. Sadly, the fear of failure has taken over the benefits of success that might come from that failure in the long run

[JDM73]

Two huge problems that I've experienced as a chronically ill person:

A. Doctors don't treat you immediately when they diagnose an illness. They want repeat customers, and you'd be no good to them if they treated you right off the bat and you never returned...so they make you tough it out as long as possible, knowing that you'll keep coming back. At long last, when you hobble into their office, bleeding internally and barely able to stand up--when your quality of life has been reduced to zero--they just might deign to treat you. This practice *must* change.

B. Doctors won't treat pain--not even pain of the crippling, incapacitating variety. Their concern about prescribing opioids is legitimate, of course, because the Drug Enforcement Administration is constantly breathing down their necks. The threat from the DEA has to be removed; chronic pain patients are not junkies and doctors shouldn't have to fear for their livelihood and freedom when treating those patients.

[oustfan]

You didn't mention it, but it sounds like your beef is with the FDA.