What's It Going to Take to Really Have Personalized Medicine?

Posted by Travis Bond

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Jan 26, 2015 12:28:00 PM


Of all the medical wonders unfolding before our eyes, personalized medicine may be the most amazing of them all, with the power to achieve previously impossible and long dreamed-for miracles.

Not many patients are experiencing it yet, and not many doctors have the resources and the tools to deliver individual therapies rooted in breakthroughs in DNA testing and knowledge, diagnostic imaging, and health information technology.

Fact is, one-size-fits-all medicine has accomplished a lot but it will not pull everyone across the finish line. Well, you say, hasn't that always been true?

Yes, of course, but the difference today is we now know it's possible to save more patients if we take a closer look at each person's biological makeup and personal situation. And maybe some of the one-size-fits-all patients would be doing even better if we'd been able to deliver therapies based on their exact biology and situation.

So it's certainly an attention-grabber when the White House says it's going to launch a new initiative to boost precision medicine, another name for much of what is often referred to as personalized or individualized medicine. Anyone with a serious disease, a chronic illness, or heredity suggesting they are at risk for serious illness, can't help leaning in and wondering: will these advances come fast enough to save me or my loved ones?

We certainly hope so. As President Obama announced the broad outlines of his precision medicine initiative in the State of the Union address (you can read more about his plan here), one of personalized medicine's medical miracles, Bill Elder, was a guest in the First Lady's box. Instead of an early death, he's looking ahead to many years as a primary care physician, thanks to a new drug created specifically for a tiny subgroup of cystic fibrosis patients.

Personalized Medicine: The Acid Test For Patient-Centered Care

house-callPersonalized medicine is certainly the apex of the phrase that's so popular right now in health reform circles: "Patient-centered care." Newcomers to health policy-speak can find the term a little puzzling: if the whole point is to help patients, isn't the healthcare system centered on patients, by definition?

Sounds logical enough but as soon as you or a loved one gets sick, really sick, or diagnosed with a chronic illness, that's when you find out that the healthcare system is far more focused on the efficiency of the healthcare provider than it is on the needs and preferences of the patient. It makes sense to, for example, wake up a hospital patient who's just gotten to sleep after a long night, if that's going to keep the shift on schedule. It doesn't make much sense to the patient, who needs rest to recover.

When a tumor, for example, is removed, shouldn't we routinely run all available tests on it, to learn as much as possible about the patient's situation, outlook, therapeutic and preventive options, now and in the future? Rule them in or out for various drugs that might be used now or in the future? Capture the data for other patients whose physical and genetic characteristics they share?

The case can be made that yes, we should, if the patient is at the center of the process. It can also be argued that no, we shouldn't, when forced to weigh the chance of the patient benefitting against the certainty of the manpower, physical resources and financial burden all those additional tests would place on any one hospital lab, or the healthcare system at large, which is why many choose to do only the basic level of testing, even when patients request more extensive lab work. That's healthcare provider-centric. Is it a choice that's comfortable for doctors, researchers, and hospitals? Probably not. They didn't get into this line of work because they just don't care.

Even if we are able to come up with the money and the willpower to harness new technologies for personalized medicine, it's not likely to take root unless we truly become patient-centric. That includes a shift to patients as consumers, buying what they think they need, from who and where they want to buy it, considering carefully their choices in various situations, from the local drugstore clinic to a top doctor at a famous cancer hospital. In many cases, doctors will have to impress these customers to keep their business.

Back To The Future, With An Old Doctor's Bag To Anchor Our Memories

doctor-bagPatient-centered medicine, while a modern rarity, isn't new. For centuries - yes, even here in America - the doctors came to our homes. It was a naturally transparent and holistic approach: the doctor saw not just the patient, but also the family and how they lived, and when the doctor prescribed whatever was needed for the patient, everyone there knew what was supposed to be done. If the girl next door had the same illness, folks including the doctor were likely to know that, too.

It's true that in those days we didn't have the transportation access that we have today. A lot of stay-at-home Moms didn't have cars and some didn't even have driver's licenses. So taking Suzy or Johnny to the doctor's office was not always a realistic option. But even for those who could easily get out and about, it was great to be able to allow a sick child to rest in bed waiting for the doctor to arrive. Very patient-centric. And if an important prescription was needed after the drugstore was already closed, it wasn't unusual to be able to call the pharmacist at home.

So what happened? When the U.S. economy saw the power of mass production, it tried to do the same thing in healthcare. How could doctor visits be mass-produced? They figured it out, added a lot of helpful technology that certainly won't fit into the iconic doctor's bag, and patients and families started going to the doctors, instead of the reverse.

Well, let's amend that: it's pretty hard to fit a family into one of those 8' X 10' examination rooms. Imagine if a whole family really did show up along with the patient for a routine doctor's appointment. You can be sure they'd encounter more than a few raised eyebrows. Except in life-or-death cases (where facilities tend to be ready with a special waiting room), or surgery, where the doctor is often eager to connect with family caregivers, doctors aren't expecting a great deal of interaction with the patient's family.

Yes, I Do Want To See What You're Writing About Me

doc-patient-sharing-info-computerAnother contrast to the house call (which some startups, and telemedicine, in another way, are trying to bring back) and its open swirl of information: patients at the doctor's office very rarely get to see what doctors write about them. So they may not even know if what the doctor thinks happened is wrong, or what course of action is being pursued to try to make things better.

This is changing, as more patients insist on complete copies of their records and more organizations realize there's a competitive advantage to be had in making things easier for doctors and patients. It's wonderful for medical science to more closely mirror the free and open society we believe in: if somebody's written something about you, you should be able to see it - just like a credit report. When you can't, it's a microcosm of injustice.

So how can we turn this ship around and become patient-centered again? We're at an exciting turning point in history: technology is enabling improved communications between healthcare providers, patient, families and caregivers, giving us the opportunity to make medicine all about the patient and what he or she needs and wants. For me, being able to give patients access to their full medical record - all doctors, hospitals, labs and imaging - is a way of bringing the care model back to the patients.

Our health no longer needs to be something we check on for a few hours a year. Never before have we had access to so much information: smartphone attachments and wearable devices can measure heart rate, check your ears, blood pressure, glucose and much more. As these devices become more common, the data they output will appear in increasingly user-friendly forms: colorful charts patients can use to see how things are going, information MDs will get used to as part of the overall medical chart.

The patient power movement for patients to have digital access to their entire medical history, anytime, day or night, is a beacon of light on this journey, especially when patients and caregivers can add to the record their own observations on how things are going. For patients who choose to share their data with other family members, caregivers, and doctors, it's a way of inviting the doctor back into the house, to see how things really are for the patient, in order to envision how they might be.

And it is a choice. Patients don't have to share their information. But all that data has to go somewhere. Patients are interested in expert interpretation and advice on their health, even when they aren't sick. Doctors and hospitals who can show that they are interested in knowing all about their patients - even when information comes from other doctors, other hospital systems, caregivers, and the patients themselves - will be the winners in this new era as patients invite them in, eager to work together for the best possible outcome.

Travis L. Bond (@TravisLBond), is founder and CEO of CareSync.com, which combines digital technology and coordinated care services connecting doctors and patients with their full medical records, accessible 24/7. Travis has been involved in healthcare as an entrepreneur for over twenty years, started CareSync to help a friend navigating the choppy waters of chronic illness, and is a believer in putting the building blocks of commerce and the human spirit together to ease and empower the human experience.

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