As a physician, I know the challenge of helping patients determine which health care options might work best for them given their personal situation and preferences.
Too often they — and their clinicians — must make choices about preventing, diagnosing and treating diseases and health conditions without adequate information. The Patient-Centered Outcomes Research Institute (PCORI) was created to help solve this problem — to help patients and those who care for them make better-informed health decisions.
Established by Congress through the Patient Protection and Affordable Care Act as an independent research institute, PCORI is designed to answer real-world questions about what works best for patients based on their particular circumstances and concerns. We do this primarily by funding comparative clinical effectiveness research (CER), studies that compare multiple care options.
But more research by itself won’t improve clinical decision-making. Patients and those who care for them must be able to easily find relevant evidence they can trust. That’s why our mandate is not just to fund high-quality CER and evidence synthesis but to share the results in ways that are meaningful to patients, clinicians and others.
We’re also charged with improving the methods used in conducting those studies and enhancing our nation’s capacity to do such research.
We will be evaluated ultimately on whether the research we fund can change clinical practice and help reduce the variations and disparities that stand between patients and better outcomes. We’re confident that the work we’re funding brings us and the audiences we serve closer to that goal.
Recently, some questions have been raised in health policy circles about our holistic approach to PCORI’s work. That view holds that direct comparisons of health care options — especially those involving high-priced interventions — should be the dominant if not sole focus of PCORI’s research funding approach as a path to limiting the use of expensive, less-effective options.
We agree that discovering new knowledge on how therapies compare with one another is a critical mandate of PCORI and is essential to improving the quality and effectiveness of care. However, ensuring that patients and those who care for them have timely access to and can use this knowledge, so that they can effectively apply it to improve their decisions, is also very important.
Continue reading “How PCORI’s Research Will Answer the Real World Questions Patients Are Asking”
Filed Under: OP-ED, THCB
Tagged: Joe Selby, Patient-Centered Outcomes Research Institute, Patients
Mar 27, 2014
When Michael injured his knee, he did what any responsible person would do. He was not incapacitated, and though the knee was painful and swollen, he could get around pretty well on it. So he waited a few days to see if it would get better. When it didn’t, he saw his primary care physician, who examined it and quite reasonably referred him to an orthopedic surgeon. The orthopedic surgeon considered ordering an MRI of the knee but worried that insurance would not cover a substantial portion of the $1,500 price tag, so he suggested a less expensive alternative: a six-week course of physical therapy that would cost only $600 – a quite responsible course of action.
At the end of this period of time, Michael was still experiencing pain and intermittent swelling. The orthopedic surgeon made another quite responsible decision and ordered the MRI exam, which showed a torn meniscus. The orthopedic surgeon could have recommended arthroscopic surgery, which would have earned him a handsome fee and generated revenue for his physician-owned surgery center. Instead he again acted quite responsibly, advising Michael that the surgery would actually increase the pain and swelling for a time and probably not improve his long-term outcome. Based on this advice, Michael declined surgery.
Though everyone in this case proceeded responsibly, the ultimate outcome was inefficient and costly. Many factors contributed, but perhaps the most important was the fact that Michael’s physician outlined choices based on an inaccurate understanding of the costs associated with his recommendations. The orthopedic surgeon thought that the cost of six weeks of physical therapy was 60% less than the MRI. In fact, however, the actual payment for the MRI from the insurance company would be only $300, not the “retail” price of $1,500. What appeared to be the less expensive option was actually twice as expensive, and it delayed definitive diagnosis by six weeks.
This story is emblematic of a larger problem in contemporary healthcare. No one – not the patients, the physicians, the hospitals, or the payers – really understands in a thorough way the true costs of their decisions. After receiving care, patients routinely receive by mail multi-page “explanations of benefits” that show huge differences between list prices and actual payments. Most find it baffling to try to determine who is paying how much for what. Physician practices and hospitals get calls every day from panicked patients who believe that they are being billed for exorbitant costs, when in fact most or all of the charges will be paid by insurance at a huge discount.
Continue reading “The Black Box at the Center of Health Economics”
Filed Under: THCB
Tagged: Costs, doctor/ patient relationship, Economics, Patients, Physicians, Richard Gunderman
Jan 25, 2014
The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.
Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”
And Keller went on to describe what those experts thought.
Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”
Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.
Continue reading “In Praise of Lisa Bonchek Adams, Breast Cancer Expert”
Filed Under: Uncategorized
Tagged: Brian Loew, Cancer, e-patients, FutureMed, Inspire.com, Patients, Social Media, Wellness
Jan 16, 2014
Thank you, my patients for all you have done for me. Thank you for the encouragement and support. Thank you for believing in me enough to join me in this crazy new way to do health care. Thank you for giving me the honor of being the one you call “my doctor.”
Your trust motivates me to work harder to justify that faith in me – a faith I often don’t have and, one I certainly wouldn’t have without you. I hope and pray this holiday season is a blessing to you. May you find peace in this time of year so often without peace.
May you also have a happy and healthy new year. May you stay out of the ER, away from the hospital and, yes, away from doctors. May you have no need for lab tests, procedures, x-rays and medications (and if you must have medications may they be very cheap.)
If, however, you do get sick, remember that I am here to help you get well, feel better or avoid getting any worse. And if I cannot do any of these, I will still be there to stand by your side through the hard times, and to offer whatever comfort I can give. Doing these things is what it means to me when you call me “my doctor.” It is why that is such an honor.
Again, thank you for all you do for me. God bless you.
Rob Lamberts, MD, is a primary care physician practicing somewhere in the southeastern United States. He blogs regularly at More Musings (of a Distractible Kind),where an earlier version of this post first appeared.
Filed Under: Physicians, THCB
Tagged: Patients, Physicians, practice of medicine, primary care, Rob Lamberts
Dec 8, 2013
So I was at TechfestNW earlier this fall and I had the opportunity to hear James Keller at WalmartLabs speak about the importance of having a minimum valuable (versus viable) product that is tied into the user experience. It is how the user’s emotional response to the application’s interface, which is so important to have, that gives a product meaning.
And this concept (although I admit I completely stumbled upon it) is at the very heart of what makes NOSH ChartingSystem so different. As I have stated on my blogs before and on my Indiegogo campaign site, I wanted to have an EHR that was both intuitive to use AS WELL AS having an interface that was calming and meaningful at the same time. So as an example from the medical world, having a pain scale is pretty good indicator of how user-friendly your application is.
An analogous concept is the OMG-to-WTF scale (see above).
Where does your EMR stand on the scale?
Continue reading “The OMG to WTF? EMR Pain Scale”
Filed Under: Tech
Tagged: Design, EHR, HIT, Michael Chen, Patients, Physicians
Nov 19, 2013
Recently I was asked to intervene on behalf of a patient who, trapped by circumstance, was paying off an enormous bill for a lithotripsy procedure. What I uncovered wasn’t news, but it drove home how egregious the current system can be, why it so badly needs to be fixed, and how the Affordable Care Act (ACA) helps move us in the right direction.
The patient had health insurance through her husband’s job. But it was cancelled just after the hospital validated it, because the employer failed to pay the premium. The procedure was performed, and the patient was charged as “self-pay.”
If Medicare had been the payor in this case, the hospital’s total reimbursement would have been a little less than $2,000. But the lithotripsy and associated costs were billed at $33,160, or just under 17 times the Medicare rate. After the patient applied for financial assistance, a 30% contractual adjustment was applied, reducing her bill to just under 12 times the Medicare rate.
If the health system had asked her to pay 190 percent of Medicare – typically the upper end of commercial insurance rates – her bill would have been about $3,800. By the time I was contacted, the patient and her husband – responsible people trying to make good on their debt – had already paid the health system $5,700 or 285 percent of Medicare. The hospital insisted they owed an additional $16,000.
I laid this out in a letter to the CEO and, probably because he wanted to avoid a detailed description of this unpleasantness in the local paper, he relented, zeroing out the patient’s balance. No hospital executive wants to be publicly profiled as a financial predator.
But while that resolved that patient’s problem, it did nothing to change the broader practice. Most US health systems, both for-profit and not-for-profit, exploit self-pay patients in this way. Worse, not-for-profit health systems legally pillage their communities’ most financially vulnerable patients while getting millions of dollars in tax breaks each year for providing charity care.
Aggressive collections procedures, including home liens, are widespread.
Some states have strictly limited what hospitals can charge low income patients. In California, uninsured patients with incomes below 350 percent of the federal poverty level (FPL) – $82,425 in 2013 for a family of 4 – can be charged no more than Medicare rates. In New Jersey, patients within 500 percent of the FPL cannot be charged more than 115 percent of Medicare.
Section 9007 of the ACA took effect last year and prohibits excessive pricing for self-pay patients, and would revoke a charitable hospital’s tax-exempt status if it charges them more than it charges for insured patients. The language is ambiguous, conceivably allowing health systems to circumvent the law’s intent. But the spirit is clear. To keep their not-for-profit tax status and perks, health systems must stop taking advantage of self-pay patients.
Continue reading “And Yes, The Affordable Care Act Really Does Make Care More Affordable. Here’s One Example ….”
Filed Under: THCB, The Business of Health Care
Tagged: Brian Klepper, Costs, Hospitals, Medicare, Patients, Premiums, self-pay patients, The ACA
Nov 18, 2013
The reason that Republicans shut down the federal government, it turns out, was to “restore patient-centered healthcare in America.”
As the lead author of a policy paper entitled, “Will the Affordable Care Act Move Patient-Centeredness to Center Stage?” I admit to a certain guilty thrill when I read this precise demand coming as the climax of a letter sent by 80 hard-right representatives to House Speaker John Boehner (R-OH). You don’t get much more “center stage” than shutting off the federal money spigot, which is what the letter – discussed in a recent article in The New Yorker – threatened unless the ACA was defunded.
Having said that, patient-centeredness was a truly odd choice to occupy a central role in the conservative casus belli that ended up disrupting the entire U.S. economy until the right wing finally caved.
To begin with, the term is a minor piece of jargon likely to draw blank stares from pretty much the entire American public. Even for us health policy mavens, the GOP letter linking James Madison on the redress of grievances to defunding Obamacare to a “restoration” of patient-centeredness required major mental gymnastics.
Then there’s the unintentional linguistic irony. The term “patient-centered medicine” originated after World War II with a psychoanalyst who urged physicians to relate to patients as people with physical and psychological needs, not just a bundle of symptoms. “Patient-centered care” further defined itself as exploring “patients’ needs and concerns as patients themselves define them,” according to a book by the Picker/Commonwealth Program for Patient-Centered Care, which coined the term in 1987. Patient-centered care was adopted as a “goal” by the Institute of Medicine, which added its own definition, in 2001.
But here’s where the irony kicks in. Obamacare opponents assert that the ACA undermines the traditional doctor-patient relationship – although I suspect that being able to pay your doctor because you have health insurance actually improves it quite a bit.
Yet in calling for “patient-centered healthcare” instead of the more common “patient-centered care” or even patient-centered medicine, conservatives unwittingly abandoned doctor-patient language in favor of business-speak.
Continue reading “GOP’s Oddest Obamacare Rejection: “Patient-Centered Healthcare””
Filed Under: THCB
Tagged: GOP, GOP Repeal, government shutdown, healthcare vs. health care, Michael Millenson, Obamacare, Patient-centered care, Patients, The ACA
Oct 27, 2013
A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”
Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).
And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).
They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.
Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.
No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:
- Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
- Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.
These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.
These innovations point the way to much better academic conferences. Here’s why:
The power of patient presence
I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)
I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.
How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.
But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.
In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.
Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.
Continue reading “* Patients Not Included”
Filed Under: Physicians, Tech, THCB
Tagged: digital health, e-patients, Leslie Kernisan, patient engagement, Patients, Stanford Medicine X, Tech
Oct 25, 2013
The dull whir of the computer running in the background seemed to have gotten louder as the patient fell quiet. She was a young woman, a primary-care patient of mine, seeking a referral to yet another gastroenterologist. Her abdominal pain had already been checked out by two of the city’s most renowned gastroenterologists with invasive testing, CAT scans and endoscopic procedures.
But she wasn’t satisfied with her diagnosis — irritable bowel syndrome — or the recommended treatment and wanted a third opinion. I tried to reason with her but failed to convince her otherwise. Even when I acquiesced and gave her the referral, she walked out visibly unhappy. I sat there listening to the whirring, feeling disappointed.
Physicians love being liked. They also love doing their jobs well. With other incentives, such as monetary returns, dwindling, the elation we get from satisfying a patient as well as providing them good care is what still makes being a doctor special. But is keeping patients satisfied and delivering high-quality care the same thing? And more important, can patients tell if they are getting good care?
Policymakers certainly think so. In fact, under the Affordable Care Act, Medicare, and Medicaid hospital reimbursements are now being tied to patient satisfaction numbers.
But the association between patient satisfaction and the quality of care is far from straightforward, and its validity as a measure of quality is unclear.
In fact, a study published in April and conducted by surgeons at the Johns Hopkins School of Medicine showed that patient satisfaction was not related to the quality of surgical care. And a 2006 study found that patients’ perception of their care had no relationship to the actual technical quality of care they received. Furthermore, a 2012 UC Davis study found that patients with higher satisfaction scores are likely to have more physician visits, longer hospital stays and higher mortality. All this data may indicate that patients are equating more care with better care.
Although patients and their physicians generally have similar goals, that is not always the case. As a resident, who is not paid on a per-service basis, I have no incentive to order extra testing or additional procedures for my patients if they’re not warranted. But one study found that physicians who are paid on a fee-for-service basis and therefore have an incentive to deliver services — needed or not — are more likely to deliver these services (such as an MRI for routine back pain).
On top of that, as another study found, they also are more liked by their patients. It is no wonder then that the number of patients with back pain, one of the most common reasons for physician visits, are increasingly being overmanaged with MRIs and narcotic pain medications.
Continue reading “In Medicine, More May Not Be Better”
Filed Under: Physicians
Tagged: Haider Javed Warraich, Outcomes, Overtreatment, Patients, Physicians, practice of medicine, Quality
Oct 23, 2013
Earlier this month, the editors of THCB saw fit to post my essay, “The End of the Era of Coronary Angioplasty.”
The comments posted on THCB in response to the essay, and those the editors and I have directly received, have been most gratifying. The essay is an exercise in informing medical decisions, which is my creed as a clinician and perspective as a clinical investigator.
I use the recent British federal guideline document as my object lesson. This Guideline examines the science that speaks to the efficacy of the last consensus indication for angioplasty, the setting of an acute ST-elevation myocardial infarction (STEMI). Clinical science has rendered all other indications, by consensus, relative at best. But in the case of STEMI, the British guideline panel supports the consensus and concludes that angioplasty should be “offered” in a timely fashion.
I will not repeat my original essay here since it is only a click away. The exercise I display is how I would take this last consensus statement into a trusting, empathic patient-physician discourse. This is a hypothetical exercise to the extent that little in the way of clear thinking can be expected of a patient in the throes of a STEMI, and not much more of the patient’s caring community.
So all of us, we the people regardless of our credentials, need to consider and value the putative efficacy of angioplasty (with or without stenting) a priori. For me, personally, there is no value to be had rushing me from the “door to the balloon” regardless of the speed. You may not share this value for yourself, but my essay speaks to the upper limits of benefit you are seeking in the race to the putative cure by dissecting and displaying the data upon which the British guideline is based.
There is an informative science, most of which cannot deduce any benefit and that which deduces benefit finds the likelihood too remote for me to consider it worth my attempt. A hundred or more patients with STEMI would have to be rushed to the catheterization lab to perhaps benefit one (and to harm more than one).
Continue reading “The Great Coronary Angioplasty Debate: Giving Patients the Right to Speak”
Filed Under: Uncategorized
Tagged: cardiology, doctor/ patient relationship, informed medical decision making, NICE, Nortin Hadler, Patients, PCI, STEMI, stents
Oct 19, 2013