Your cancer treatment decisions aren't about you - but they should be

By Michaela Dinan and Leigh Ann Simmons

There's been a lot of discussion about the role of the patient in health care decision-making. Yesterday, results from a study of Medicare patients showed where you live and which doctor you see influences whether you receive elective surgery.  For example, if you have early stage breast cancer and live in Victoria, Texas, it’s very likely that you’ll have a mastectomy. If you live in Muncie, Indiana, not so much.

In a similar vein, Jessie Gruman analyzed her cancer treatment experience to discuss how health care decisions get made.  By all accounts, Gruman is what we’d call a “highly activated” patient. She’s engaged in her care because this is what she does for a living. She’s motivated by her diagnosis. And yet still, upon reflection of her experience Gruman identified moments where her physical state was so poor that she was unable to fully participate. In fact, she has almost no recollection of a doctor visit where they decided to stop her chemotherapy treatment.

So what's going on?

Shannon Brownlee, the lead author of the Medicare study said their findings demonstrate the physician-centric nature of the U.S. healthcare system. She noted that, "....patient preferences are not always taken into account when medical decisions are made." Who, us? We care about our patients. That’s why we keep telling them to eat right, exercise regularly, reduce stress, take their medication, and [fill in doctor’s orders here].

And therein lays the rub. We’re telling them. But what are they telling us?

Unfortunately, not much right now. But they could be telling us so much more. In fact, the Brownlee et al. Medicare study is a perfect example, because the Accountable Care Act provides for an element of personalized medicine that we believe is critical – a personalized health plan. The mere act of developing a personalized health plan with patients addresses several barriers we’re experiencing to good health in this country – understanding obstacles to adhering to prescribed treatment, identifying goals that are important to the patient to support strong engagement over time and so the physician has a frame of reference when making treatment recommendations, and  involving the patient in the process of care so they become invested not only in their health, but also in the partnership with their provider (hear, hear Dr. Zeiger).  Because let’s face it. It’s human nature for many of us to take action on something if we’re involved in the decision-making rather than if someone simply tells us we “have to” or “should” do it. Furthermore, in cases like Gerson’s, if the provider has a document that includes data on the patient’s preferences, goals, and challenges, making the decision to, say, stop chemotherapy when a patient is too ill to be fully engaged becomes more about the patient than it might otherwise.

So let’s start making it about the patient. Bring them into the fold. Recognize they are experts on themselves. Involve them in the decisions about their care. And then we’ve truly entered the realm of personalized medicine.

Why Matthew Herper has it wrong

In his column today, Matthew Herper brings up an important issue in personalized medicine. Namely, pharmaceutical companies need to proceed with caution as they pursue research, development, and sales of drugs tailored to "niche populations," or those for whom the drug will work only if they have the unique genetic variation of the disease being treated. Certainly, as we develop drugs in an era where we know more about how people will respond based on their genetic make-up, we will have to simultaneously create new research and financial paradigms that can sustain this important and necessary work.

However, that's not the end - or even the beginning - of the story.

Where Herper loses me is his narrow definition of personalized medicine.  What he's talking about in this piece is pharmacogenetics (or pharmacogenomics) , which is one facet of personalized medicine. But personalized medicine is a much broader field of health care. In fact, given the relatively few targeted therapies that have actually made it to market, I would argue that pharmacogenetics is really a small piece of the personalized medicine pie.

We and others have defined personalized medicine as a predictive, preventive, participatory, and prospective approach to care that is individualized to patients based not only on their unique molecular information, but also on their unique clinical, social, behavioral, and environmental data. Planning for health is a critical component of personalized care. While many patients may have similar goals - continued health and wellness, weight loss, reduced blood pressure, improved insulin sensitivity - how they reach those goals is customized based on their unique profile identified through a comprehensive health risk assessment. Furthermore, a key component to the success of personalized medicine is engaging patients in the process - whether that means getting them on board with taking that tailored prescription medication, or getting in the recommended 2.5 hours of physical activity a week. Thus, tracking markers of health and disease, as well as compliance with recommended therapies over time, helps to keep both patient and provider mutually informed about how a patient is doing - and whether preventive action might be necessary to avert an event. Finally, when we get to the point in personalized medicine where we're using tailored pharmaceuticals, the patient likely has already developed disease - at least as far as where pharmacogenetics currently stands. Personalized medicine, if practiced as we're describing, is aimed first at preventing disease, and then mitigating the negative consequences of disease after it has developed. This is the true promise of personalized medicine - disease prevention that will reduce the skyrocketing rates of chronic diseases that cost the U.S. $2 trillion annually.

I agree with Herper - something "big and dangerous" did happen in personalized medicine today: An exciting drug discovery prompted debate over the promise of personalized medicine without considering personalized care beyond pharmacogenetics. By equating the two, we undermine the true possibilities of a personalized approach to care that goes well beyond what drugs to prescribe. And if we don't start implementing the features of personalized medicine that are readily accessible to us today at relatively minimal cost, then that truly will be a giant mess.

A Cancer Patient’s Plea for Personalized Medicine

A compelling piece was published in Forbes Magazine recently. Adriana Jenkins, who passed away this month, writes from the perspective of a dying cancer patient to advocate for the passing of a law to encourage drug makers to developed Personalized Medicine drugs for cancer and other deadly diseases. Her perspective, as both a patient and an individual who worked in biotech for 15 years, is both unique and moving.

Personalized health records promote horizontal integration within ACOs

ACOs, or Accountable Care Organizations, continue to be a hot discussion topic in health care reform. In the current issue of JAMA, Duke’s own Barak Richman and Kevin Schulman provide a unique business perspective on the implementation of ACOs. One of the issues they raise is the potential for the establishment of ACOs to result in health care system monopolies. They warn that health care systems might align under the promise of market dominance and not necessarily with the intention of improving health care quality or efficiency. In order to prevent a misaligning of goals, they urge that evaluation of ACOs should maintain focus on health care quality and efficiency.

Another recommendation they suggest is for health care systems to align under a horizontal vs. vertical or “bricks and mortar” approach. Whereas vertical networks focus on established hospitals and other infrastructure, horizontal networks would connect more fluid, geographically diverse care specialists. To me it seems like this idea mirrors themes in social and professional networking. Horizontal networks may take less time, investment, and have the potential to spread much more quickly than conventional geographically constrained networks. However, in my opinion a key challenge to the horizontal vs. vertical approach is how seemingly unconnected groups will be able to share information and provide coordinated care. I think that a potential solution would be the establishment of personalized health care records. Electronic personalized health care records would follow the patients, contain all their health care information, including their personalized health plan, and provide a virtual medical home that could provide a universal medium for exchanging health care information among horizontally connected providers. Without a universal medium to maintain coordination of care and ensure that information is efficiency conveyed, it may be difficult to envision how horizontal networks could provide cohesive care. In an ongoing era of rapid technology development, a personalized health care record would provide a potential means of increased portability and exploration of new options for new health care delivery models.

Controversy over reform – what’s the deal?

By Sanjay Kishore:

While healthcare has already become a firestorm of controversy for the Obama Administration, the President’s recent reform bill received another blow this past week – once again, from the courts. As reported by the New York Times on January 31st, a federal judge in Florida followed the precedent set by a Virginia court and struck down the constitutionality of the March 2010 Patient Protection and Affordable Care Act (PPACA).

In both court decisions, the issue in contention was the law’s inclusion of an “individual mandate” – a provision that requires all Americans to obtain health insurance or otherwise face a monetary penalty. Essentially, these two justices believe the federal government has overstepped its bounds by pressuring people into purchasing insurance – a sentiment recently echoed by Republican legislators as they passed a symbolic vote to repeal PPACA in the House of Representatives earlier this month.

Obviously, momentum for healthcare reform has shifted in the past year. But, what does all this controversy actually mean – especially in the context of prospective health?

Many advocates of PHC – including students like myself – realize the first step to increasing prediction and prevention in our healthcare system isn’t developing new technologies or utilizing fancy screenings: it’s extending access to what we already have. Before 2010, uninsured Americans had no financial incentive to seek preventive medical treatment – after all, if you’re an individual living on a tight-income, why visit a doctor when you’re healthy? As a result, almost 45 million Americans faced an economic pressure to delay seeking medical assistance until a traumatic incident – say, a heart attack – became too severe to bear.

Though PPACA’s expansion of insurance to 32 million Americans didn’t solve the problem, it was a solid start. If we are serious about halting the spread of chronic disease and promoting wellness in the US, we must extend access to health insurance.

As students interested in preventive healthcare, it’s in our best interests to keep our ears tuned – and our voices loud – for the next few years could be telling for the future of American healthcare!