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Guest Blog: Defining Patient Engagement

Anne Polta
Tuesday, April 3rd, 2012

Anne Polta reports on health care for the West Central Tribune in Willmar, Minnesota.  Her personal experiences as a patient include treatment for non-Hodgkin’s lymphoma at age 38 and an adverse medical event resulting in injury.  She has covered health care – specifically patient engagement and patient safety – for more than 20 years.  This post originally appeared on her HealthBeat blog on March 30, 2012 and you can follow her on Twitter via @a_polta_wctrib.

Everyone in health care is talking these days about patient engagement, but a funny thing happened on the way to the discussion: There doesn’t seem to be a widely agreed-on definition of what this actually means.

When the National eHealth Collaborative recently released the findings from an online survey conducted in February, the responses were all over the map.

Some thought patient engagement meant the ability to email the doctor, make an appointment online or have online access to the medical record. Others thought it meant access to educational information about health. Some thought it meant a willingness and comfort with asking questions or challenging the doctor’s recommendations.

Virtually everyone who responded to the survey said it was either “important” or “very important” for patients to be engaged in their care.

But how can patients be expected to do this when no one is sure what patient engagement is supposed to look like?

If the survey accomplished anything, it was to shed some light on the lack of widespread consensus and to identify the beginnings of some common points of agreement.

Of the 185 people who took part in the survey (admittedly a very small sample size for drawing any meaningful conclusions), the description on which they agreed the most was “Patient uses educational material and online resources to learn about better health or their own health conditions.” This was closely followed by “Patient uses tools and resources to manage his or her medical record and other health data.”

I was interested to note that “Patient feels comfortable challenging doctor when something doesn’t seem right or when explanations are not clear” ranked third among the responses picked by the survey participants. Does patient engagement mean it’s OK for the patient to disagree with the clinician, then? Plenty of folks would say that engaged patients are the ones who go along with whatever the doctor recommends (and sure enough, 22.7 percent of the survey respondents said “Patient follows their doctor’s orders after a visit” was a sign of an engaged patient).

Since this was a survey carried out by the National eHealth Collaborative, it isn’t surprising that health information technology was seen as a critical piece of patient engagement. But is this the most important ingredient? Can someone who doesn’t even own a computer still be an engaged patient?

What about concepts such as active participation by patients in their health care? Or commitment to learning more about their health at whatever level they’re comfortable with? Or self-management and shared decision making?

More negatively, does patient engagement mean patients will start dictating the terms of their care, even when what they want is medically inappropriate?

And who gets to define patient engagement, anyway? Does this rest with patients alone? With providers? With both of them together?

Here’s how Donna Cryer, CEO of CryerHealth, defines it in a post she wrote last year for the Prepared Patient Forum at the Center for Advancing Health:

Properly done, patient engagement in action looks like shared responsibility between patients (and their families if applicable), health care practitioners (the entire team: surgeons, physicians, nurses) and healthcare administrators (providers of the infrastructure and payment models) to co-develop pathways to optimal individual, community and population health. Patient engagement brought to life means involving patients and caregivers in every step of the process, providing training or financial support if necessary to their participation.

An infographic put together recently by Steve Wilkins of the Mind the Gap blog offers further insight into some of the challenges of defining patient engagement. Simply giving patients access to information doesn’t mean they’ll know how to use it, he writes. And measuring engagement by the patient’s willingness to ask questions and challenge the doctor fails to account for the time constraints in the exam room or the lack of confidence many patients feel in speaking up.

The role of the patient is being redefined in ways that are more far-reaching than perhaps any other time in history. Traditional power structures are being upset, and this can be unsettling to patients and providers alike. Although it may be tough to reach a consensus on what the core principles of patient engagement should be, it’s important to the process – and yes, engagement means patients should be part of it.

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Guest Blog: Summer Palpitations

Katherine Ellington
Monday, August 15th, 2011

Katherine Ellington is a medical student and writer. Her work has been featured in The New Physician magazine, at KevinMD.com and she blogs at World House Medicine.

Early one Saturday morning, I was making my plans for the day. As I moved toward the kitchen, Mom’s voice bellowed from the living room, “The coffee is ready.”

Turning my head, I could see bright rays of sunshine making a path through the open front door.  I followed my morning greeting with, “Did you have breakfast?” Mom answered, “Yes,” so I sat down with yogurt, a banana and cinnamon coffee in my favorite cup.

She came to the table, pulled her chair up close and said with half-hearted laughter, “I keep feeling these flutters.”

“What have you been up to this morning?” I asked.

She said, “Well, I ate cereal for breakfast and took my medication, then I rode my bike to the bank. Now I’m getting ready to go grocery shopping, choir rehearsal and then to get my hair done, but I keep feeling these flutters.”  Just listening to her schedule made me uncomfortable. She had other unmentioned responsibilities, like caring for my grandmother and cooking dinner, but I wasn’t ready to stir up an argument. Instead I said, “Well, it’s been a busy morning, so why don’t you go back to the sofa and rest for awhile?” 

My summer break from med school had provided us with new opportunities to share our lives and experiences. I talked about interesting findings in health and medicine while she shared more stories with me about her own life experiences. I learned to listen more attentively and I began to see her rage with the world of injustices and her strength in overcoming obstacles. At the same time, I noted the way she kept her vulnerabilities hidden“with myriad subtleties” as described in Paul Lawrence Dunbar’s poem “We Wear The Mask.” As she laid in the other room, we talked about a co-worker who’d died suddenly a few days ago. She paused for a moment, admitting her anguish.

A few weeks earlier, when we spoke about the New York City Health Department’s no trans fat public awareness campaign, her question was, “What’s the big deal?”

As I grinned through a biochemistry lesson on lipid metabolism, she became irritated and puzzled. I made more progress when I talked to her about fries and partially-hydrogenated oils leading to weight gain and rising cholesterol levels, which may increase the risk of heart disease. She got it, and began reading food labels more carefully and switched out the oils in the kitchen with healthier choices. But as she rested on the couch, I realized that reducing the stressors in her life might be harder than adjusting the contents of our pantry.

By late Saturday evening, I was sitting in front of the computer with the banter of young people outside my front bedroom window and a hint of barbeque in the air. I heard rushing footsteps coming down the stairs, then a knock on my door. In a shaky voice, Mom asked, “What did you tell me to do about these palpitations?” 

I asked, “Have these continued from early this morning?”

She nodded. “I’m too uncomfortable to lie down or sleep like this.” 

I told her, “You have to go the hospital.” I reached for the phone and dialed 911. She lamented that she didn’t think her situation was that serious. I did. She urged me to take her blood pressure. I did not.

The ambulance came in less than ten minutes. Her pulse was rapid, her blood pressure was abnormally high and the portable heart monitor gave a picture of irregularities. She was rushed to the hospital while I stayed behind with my grandmother. Grandma was now awake, upset by the ordeal and demanding answers by asking the same few questions repeatedly. “Why did they have to take your mother to the hospital?  What’s wrong with her heart? How did that happen? She’s too young to have heart trouble. They took your mother to the hospital? For what?”  It was a long night.

After an hour in the emergency room, mom was admitted to the hospital.  Her pulse, blood pressure and heart rhythms returned to normal with medication. She was released from the hospital after a few days with instructions to follow up with her primary care physician and with a referral to see a cardiologist.

That summer, I finished my first reading of our cardiovascular physiology packet with a more profound interest in the advances of science and medicine as well as the research related to health disparities. I had already learned first-hand that the prevalence of heart disease among black women is twice as high as for others.

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Guest Blog: Niseritide, the “Lost Decade”, and the Pinto

Patricia Salber
Thursday, July 21st, 2011

Patricia Salber, MD, MBA, is the founder and host of The Doctor Weighs In.  She is a board certified internist and emergency physician.    She is currently Principal at PRS Healthcare Consultants, focused on helping organizations get ready for the post-health care reform world with a special emphasis on population health improvement.

Eric Topol, MD wrote an interesting commentary in the July 7, 2011 issue of the New England Journal of Medicine, titled “The Lost Decade of Nesiritide.” Nesiritide is a drug for heart failure symptoms (e.g., shortness of breath) that was approved by the FDA in 2001. Since that time, according to Dr. Topol, “well more than $1 Billion was wasted on purchasing the drug.”

It turns out that the FDA approved the drug was based on a relatively small, not particularly well done clinical trial that showed improvement in self-reported symptoms of shortness of breath 3 hours after the drug was administered. Once the drug was approved, the drug was marketed like crazy. For profit outpatient heart failure “tune up” clinics opened so that heart failure patients could get weekly intravenous infusions of the drug.

Over the ensuing decade, small studies were published that suggested Nesiritide was associated with a worsening of kidney function and perhaps an increased rate of death. These studies led to a recommendation that a large clinical trial be conducted so issues of safety and efficacy could be more definitively determined.

As a result a large international clinical trial of the drug was conducted from May 2007 to August 2010. It involved 7141 patients in 398 centers around the world. The results of the study, published in the same issue of the NEJM as Dr. Topol’s commentary, failed to find any statistically significant benefit of the drug on heart failure symptoms. It also failed to find any worsening of kidney function, but it did identify increase in rates of hypotension (low blood pressure). The authors conclude “one the basis of these results, nesiritide cannot be recommended for routine use in the broad population of patients with acute heart failure.”

Thus, over a ten year time span, Neseritide was infused into the veins of many, many patients with heart failure, costing payers (insurers and, in the case of public programs like Medicare, tax-payers) over a $1 billion, without bringing any significant benefit to the end-user (AKA, the patient). Of course, not everyone lost as a result of this wasteful spending – that $1 billion benefitted the manufacturer(s), shareholders, owners of the “tune up” clinics and everyone else along the supply chain.

Dr. Topal calls this the “Lost Decade of Nesiritide” likening it to the “lost decade” of the Japanese economy in the 90s and perhaps the “lost decade” the US economy may be in the midst of experiencing. He is probably right. We spent the money. We did not get the expected health benefits. Nothing to be done? Right?

I suspect somewhere in the bowels of the manufacturers’ files are calculations on how much money could be made on the drug regardless of its marginal – if any – benefit. This tale reminds me a bit of the story of the Ford Motor Company executives who calculated the cost-benefit ratio of keeping quiet about the known flaw in the gas tank design of the then popular Pinto.

Costs related to paying for burns from ruptured gas tanks:*
Savings: 180 burn deaths, 180 serious burn injuries, 2,100 burned vehicles.  

Unit Cost: $200,000 per death, $67,000 per injury, $700 per vehicle.

Total Benefit: 180 X ($200,000) + 180 X ($67,000) + $2,100 X ($700) = $49.5 million.
Costs resulting from paying for an $11 insert to prevent the gas tanks from rupturing:
Sales: 11 million cars, 1.5 million light trucks. 

Unit Cost: $11 per car, $11 per truck.

Total Cost: 11,000,000 X ($11) + 1,500,000 X ($11) = $137 million.*Table adapted from http://www.engineering.com/Library/ArticlesPage/tabid/85/articleType/ArticleView/articleId/166/Ford-Pinto.aspx

Ford ultimately paid much more than the $137 million it would have cost to prevent the gas tank ruptures to settle lawsuits, recall the cars, and fix the problem – the insertion of a plastic barrier between the gas tank and the exterior.

If the Nesiritide story was more like the Pinto story, we would see efforts to recoup that lost $1 Billion. But fortunately patients weren’t seriously harmed by the administration of the drug, so there won’t be any lawsuits for damages and there won’t be any public outrage. After all, we are used to waste in health care – we have been talking about it – and documenting it – for years.

So the manufacturers and “tune up” clinics will keep their profits from a drug they most likely knew was not worth the price they were charging. The large scale study that refutes the drugs benefit will eventually lead to a slow decline in the use of the drug as insurers change their policies regarding reimbursement for the drug and…the business of medicine will keep on going, mostly unchanged by yet another expose of poor oversight practices that let waste flourish in our non-system.

An FDA with teeth – one that would have the strength to not approve a drug on the basis of only one, not particularly well-done study – or at the very least was able to tie an interim approval to the rapid design and implementation of a more definitive study – is probably too much to wish for in this era of hatred of all things regulatory. What’s to be done….?

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Guest Blog: Health Information Technology Has Come to My Town

Linda Bergthold
Thursday, April 28th, 2011

Linda Bergthold is a health policy consultant and a blogger for the Huffington Post. She has over twenty-five years of experience in health care and was a working group leader in Hillary Clinton’s Health Care Reform Task Force in 1993. She has been an advocate of health care reform for two decades in California and nationally.

All the talk about information technology in health care was just an abstraction to me until it actually came to my town.   I read about all the money the federal government was spending to spur the development of electronic medical records, but most of my records were still stored in those vast walls of color coded folders. Then my medical group introduced a new IT system that allows patients to do a lot of fantastic things online – for FREE!

I used to hate calling for an appointment, because you had to deal with the phone menu options then wait for someone to answer, who would usually put you on hold. To me, the most important person in a medical office is that person at the front desk, but you wouldn’t know it by what they are paid (not very much) or trained (not very much).  The innovation of being able to go online and ask for an appointment directly was one I knew I would like.

I had heard about emailing your doctor, but initially it cost $60 a year, and I just didn’t think I would use it that much.  After a few months, though, the medical group made all online services free, including emails.

The first time I emailed my doctor I was careful to make the message short and to the point.  I was worried that I would “bother” the doctor with my questions.  I thought I probably had a urinary tract infection (UTI) and I told her my symptoms. To my surprise, I received an answer a few hours later with an electronic order to have a urine test.  When I arrived at the lab, they had my information and I waited about five minutes.  By the time I got home several hours later, the results of my test were online, including an email from my doctor that I did indeed have a UTI and she had ordered a prescription that was already at my pharmacy.

By now I was really getting into this online stuff.  I started making appointments online, asking for prescription refills online, checking out my test results and getting information about what the results meant.  All the little annoyances and barriers that keep you from taking care of business regarding your health were being removed, and fast! I had been dragging my feet on my annual mammogram, but after an email consult with my doctor (Do I really have to have one this year? What is the evidence that I need one?), I made my appointment.

When I go see my doctor, she sits on a stool with a portable computer in front of her, where she can see all my records at a glance.  As I tell her my problems, she enters them in my record, and by the time I leave, I have a printout of any instructions or medications I need to follow.

This is the way medical care should work.  The systems support you, the patient, not just the physicians and the administrators.  When you are not feeling well, you get fast results and pretty immediate attention.  True, you need a computer or access to one, but you can do the same stuff on a smart phone too.  Privacy problems? Not as far as I can tell.  I have my own log-in and password. Could some of my medical information be shared inappropriately? Maybe.  But because I am on Medicare, I can’t have my insurance taken away from me because some insurer finds out I have a pre-existing condition, so I basically don’t care.

I have no idea how many U.S. medical practices provide this type of service to their patients.  If I were you, though, I would certainly ask::  When will I have access to my medical records online? When can I email my doctor? When will this come to my town?

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