chronic illness

Dr. Brian Goldman is right.

We expect a level of perfection from our doctors, nurses, surgeons and care providers that we do not demand of our heroes, our friends, our families or ourselves. We demand this level of perfection because the stakes in medicine are the highest of any field — outcomes of medical decisions hold our very lives in the balance.

It is precisely this inconsistent recognition of the human condition that has created our broken health care system. The all-consuming fear of losing loved ones makes us believe that the fragile human condition does not apply to those with the knowledge to save us. A deep understanding of that same fragility forces us to trust our doctors — to believe that they can fix us when all else in the world has failed us.

I am always surprised when people say someone is a good doctor. To me, that phrase just means that they visited a doctor and were made well. It is uncomfortable and unsettling — even terrifying — to admit that our doctors are merely human — that they, like us, are fallible and prone to bias.

They too must learn empirically, learning through experience and moving forward to become better at what they do. A well-trained, experienced physician can, by instinct, identify problems that younger ones can’t catch — even with the newest methods and latest technologies. And it is this combination of instinct and expertise that holds the key to providing better care.

We must acknowledge that our health care system is composed of people — it doesn’t just take care of people. Those people — our cardiologists, nurse practitioners, X-ray technicians, and surgeons — work better when they work together.

Working together doesn’t just mean being polite in the halls and handing over scalpels. It means supporting one another, communicating honestly about difficulties, sharing breakthroughs to adopt better practices, and truly dedicating ourselves to a culture of medicine that follows the same advice it dispenses.

Continue reading “The Good Doctor”

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Information is power, but sometimes it can be too much of a good thing. Information overload affects workers in every industry – this is particularly true for data-reliant and intensive industries like healthcare. And, it’s not getting any better – by 2020 the healthcare industry alone is estimated to have 25,000 petabytes of data – that’s equivalent to 500 billion four-drawer filing cabinets. With its complexity and breadth, and not least with its impact on our lives, healthcare has to be the poster child for how efficient management of data can improve productivity and help providers make better, more informed decisions.

A first trick, however, is getting at the relevant pieces of information. Today, a lot of manual work goes into accessing and cleaning up data that is siloed and unstructured. Too much information is still on paper, but even where it has been migrated to electronic medical records (EMR), practice management systems, or lab diagnostic systems, much of it is still unstructured. The majority of hospitals are finally implementing EMRs, and many of us are working to provide advanced analytics based on the information going online, but, at a recent Xerox healthcare client council meeting, several CIOs emphasized that there still remains a huge challenge in cleaning, standardizing, and integrating data before it can be used for decision making.

Fortunately, powerful methods are becoming available that can extract relevant events from physician narratives, intelligently aggregate data, customize information for clinicians based on context, and visualize information. For instance, in France, a number of hospitals are testing an emerging application based on Natural Language Processing technology developed at the Xerox Research Centre Europe in Grenoble, France. Researchers designed the solution to help prevent the spread of hospital-acquired infections by finding, extracting, and combining key information in physician narratives distributed in medical records. As another example, our Midas+ Live product accesses and integrates information from diverse hospital systems and puts them on a single dashboard, multiple patients at a time, hugely simplifying a physician’s task to monitor all of his or her patients.

Continue reading “What Can We Do to Simplify Healthcare?”

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Apologies to James Brown for the title of this post, as his 1968 funk classic “Say It Loud, I’m Black and I’m Proud” (click here to listen) helped galvanize the civil rights movement in America, offering a joyous rallying cry to people who for far too long had suffered at the hands of racism and oppression. The song was not only a shout of protest, but an admonition to embrace the very thing that conferred minority status on an entire people and turn what for some had at one time been a mark of shame into a badge of honor. On top of all that, the song irresistibly generates the urge to get up and shake your groove thing. That is, of course, if you are able to get up at all.

Those of us whose disease has progressed to the point where shaking our groove things is a distant memory and has left us visibly disabled – reliant on canes, walkers, or wheelchairs – also find ourselves members of a minority group, the disabled, the inclusion in which leaves some feeling invisible, helpless, and diminished. Much of the world simply isn’t designed for people who don’t have full use of their limbs, and the fully functional folks who populate it can be insensitive, uncaring, ignorant, and sometimes even intolerant. Though much progress has been made in in the fight for the rights of the disabled, the struggle is closer its beginning than its end.

Throughout much of history, victims of chronic illness, particularly of the kind that deform or disable, have often been looked upon with scorn, as if getting sick was somehow a mark of shame, the afflicted somehow responsible for their own affliction.

Continue reading “Say It Loud, I’m a Gimp and I’m Proud!”

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