The simple explanation is a proverb that has been stated in similar ways in various cultures for more than 2,000 years: “The eyes are the window to the soul.”
Not, mind you, “Windows® is the eye to the soul.”
Trust me, I appreciate computer technology and am ever-grateful for the benefits it has yielded me personally and to the patient group I represent, Spontaneous Coronary Artery Dissection (SCAD). Without a computer, search engine, and online community, I never would have met another SCAD survivor, and Mayo Clinic definitely would not be in the weeds of a virtual registry of SCAD survivors, plus a DNA biobank of patients and families from around the globe, at this very moment.
I grew up in locales where catching crabs with a chicken neck on a string and casting a net for shrimp were common practices, and in each, patience is the operative word. If you look at the case of patient-initiated research into SCAD (or any other rarely diagnosed condition), you see a progression that requires patience. The process begins vast – much like seining – and ends personal. For me, what began on AOL.com as my Internet search for any and all references to “heart dissection,” was turbocharged by Google and its evolution. (I remember worrying about what would happen to my computer if I tried this “thing” everyone was talking about. It seemed daring enough to be on AOL instead of mindspring!) But Google led me to an organization, WomenHeart: The National Coalition for Women with Heart Disease, and the online community it runs in partnership with Inspire, the Inspire/WomenHeart Support Community.
And there, on www.inspire.com/groups/womenheart is where our little incubator of SCAD patients formed. Very slowly at first, but thanks to Google’s search and display features, the pace picked up over time and we grew into the hundreds. Then, Facebook was launched, providing a seemingly more personalized venue to interact. Next Twitter, which (although ultra concise at 140 characters per tweet) is an easy way to connect with likeminded souls, similar to that instant bond when walking down the street and sharing “Great game, huh?”
Continue reading “Online Won’t Ever Replace Face-to-Face. Or Will It?”
Filed Under: Uncategorized
Tagged: ePatients, Inspire.com, Katherine Leon, Patients, SCAD
Jun 17, 2013
As my head reels at the implications of the IRS scandal mushrooming in Washington, the IRS’s recently disclosed ability to access e-mails without warrant, the intricacy of the NSA PRISM wiretap techniques that includes their ability to acquire tech firms’ digital data, and even the Justice Department’s ability to secretly acquire telephone toll records from the Associated Press, I wonder (as a doctor) what all this means for the privacy protections afforded by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) in our new era of mandated electronic medical records. Are such privacy protections credible at all?
It doesn’t seem so.
Now it seems everyone’s health data is just as vulnerable to federal review as their Google search data. This is not a small issue. We have already seen that discovering “leaks” of personal health information has produced some very handsome rewards for the feds, so it is not beyond reason to think that HIPAA might also be a funding tool for our government health care administration disguised as a beneficent effort to protect the health care data of our populace.
But even more concerning is the role the IRS scandal has for America’s health care system. After all, the Affordable Care Act is ultimately funded by the IRS by administering some 47 tax provisions. These include the right to levy a penalty against businesses and individuals who don’t provide or acquire insurance and determining how to distribute annual subsidies to 18 million people who make less than $45,000 a year and thus qualify for subsidies in buying health coverage. In addition, the agency will collect taxes on medical devices and a surtax on people making more than $200,000 a year, as well as conducting compliance audits of tax-exempt hospitals.
Continue reading “The IRS Scandal: Implications for HIPAA and the Affordable Care Act”
Filed Under: OP-ED, THCB
Tagged: Data, Dr. Wes, HIPAA, IRS, NSA, Patient privacy, Patients
Jun 11, 2013
In The Birth of the Clinic, Foucault describes the “clinical gaze,” which is when the physician perceives the patient as a body experiencing symptoms, instead of as a person experiencing illness. Even in the era of the biopsyschosocial model, the physician’s perspective is largely through a biomedical lens where biology and behavior cause disease.
In contrast, what I hear from patients is that health and illness are not merely the end results of individual biology and behavior. What people believe and experience when they are ill is usually something far more complex, deeply interconnected with their daily lives. And research shows the way people think about health influences whether they are receptive to health information, willing to change health behaviors or take medications, and even whether or not their health improves. But how are physicians, who are able to spend less and less time with patients, supposed to expand their clinical gaze to include the patient’s health beliefs and perspectives?
Psychiatrist and anthropologist Arthur Kleinman’s theory of explanatory models (EMs) proposes that individuals and groups can have vastly different notions of health and disease. Kleinman proposed that instead of simply asking patients, “Where does it hurt,” the physicians should focus on eliciting the patient’s answers to “Why,” “When,” “How,” and “What Next.”
Kleinman suggests the following questions to learn how your patient sees his or her illness:
1. What do you think caused your problem?
2. Why do you think it started when it did?
3. What do you think your sickness does to you?
Continue reading “The Patient Explanatory Model”
Filed Under: Physicians
Tagged: doctor/patient communication, health belief model, Medical Education, Namratha Kandula, Patients, Physicians, Residency
Jun 11, 2013
May 30-8:12pm: 27 yo teacher, Pam S., is out for her evening run. The delicious evening air fills her nose and lungs. She feels strong, healthy, and alive.
May 30-8:13pm: Pam pushes up a gentle hill. She feels sudden and severe pain, as if stabbed deep by a flaming splinter. Pam stops, almost falling. She struggles the mile home. The searing throb begins to fade. A long hot shower gives some relief.
June 3-5:45am: The torment progressed through the weekend and curled around pillows, drenched in sweat, she has not slept all night. As traces of sunrise light frame her bedroom window, she decides to get medical care.
June 3-9:22am: Pam tells her story to her Primary Medical Doctor (PMD) and is examined. Her pain is intense with any movement and he is worried. He orders blood work, pain medication and calls an orthopedic surgeon. The PMD completes his history and physical report, as well as his differential, in his Electronic Medical Record (EMR). The note is transmitted instantly to the surgeon.
June 3-9:59am: STAT blood work is drawn at a lab down the street.
June 3-10:37am: Pam picks up the pain medication.
June 3-11:25am: The orthopedic surgeon reads the PMD’s note, listens to Pam’s story and examines her. He orders an emergency MRI.
Continue reading “From the Case Files of the Robert Wood Johnson University Hospital, Dec 2015″
Filed Under: Physicians, THCB
Tagged: EHR, EMR, James Salwitz, Oncology, Patients
Jun 7, 2013
In my last post on California and Texas’s imminent expansion of their scope of practice regulations, I didn’t cover one important question: what do patients actually want?
Fortunately, a study just released in Health Affairs looked into it, and the results are clear: many patients want to be seen by nurse practitioners (NPs) and physician’s assistants (PAs) – especially if it allows them to be seen sooner.
To be clear: generally, Americans still prefer being seen by a physician. But preferring a NP/PA – or “not having a preference” between a NP/PA and a physician – is a big deal; it insinuates that, for certain ailments, the public views a NP/PA as just as effective a clinician. That has significant repercussions for how care is delivered, particularly for young people and underserved populations.
The researchers conducted a survey that focused on three different scenarios to judge patient preferences: a straight-up comparison of preference for physicians vs. NPs/PAs; a scenario where a patient could see a NP/PA today vs. a physician tomorrow for a minor ailment; and a scenario where a patient could see a NP/PA today vs. a physician in three days for a minor ailment. Continue reading “Data Points: Scope of Practice. When You Get Right Down To It, We’d Rather See a NP/PA Than Wait …”
Filed Under: OP-ED, Physicians, THCB
Tagged: Affordable Care Act, Mike Miesen, Nurse Practitioners, Patients, physician assistants, Physicians, primary care shortage, Scope of Practice
Jun 6, 2013
Injury to the brain continues to be a unique thing in medicine. These injuries are scary and unfamiliar to many health care providers. There is a finality to them. Their consequences are hidden a little bit; the asystole is easy to figure in the emergency room but the suppression and brain death isn’t something so easily recognized.
They’re what you might imagine, along with polytrauma, as poster child conditions for tertiarization and transfer to a higher level of care.
In truly catastrophic injury to the brain however, I’m not sure that’s a good thing.
My institution has had a small discussion lately on just what ethics and the law requires of us as a place with full neuro specialty coverage.
I’ll make up an example:
A 61 year old man comes into a small community hospital’s emergency room. He was found down at home by his wife and last seen normal four hours previously. He wouldn’t wake up and he was breathing slowly and shallowly. The ambulance crew intubated him. In the emergency room his pupils are large and don’t react to light and he doesn’t do anything when the doctor hurts him. He’s in a very deep coma. If the physician working the emergency room felt comfortable doing a brain death exam, which he doesn’t, the patient might have some very primitive reflexes left but his condition is very serious.
Continue reading “Does It Matter Where You Die?”
Filed Under: THCB, The Insider's Guide To Health Care
Tagged: Brain Injury, catastrophic injury, Colin Son, Emergency Medical Treatment and Active Labor Act, Emergency Medicine, End of Life Care, Ethics, Patients
May 31, 2013
There is a consensus that measuring performance can be instrumental in improving value in U.S. health care. In particular clinical areas, such as cardiac and intensive care, measurement has been associated with important improvements in providers’ use of evidence-based strategies and patients’ health outcomes over the past two decades. Perhaps most important, measures have altered the culture of health care delivery for the better, with a growing acceptance that clinical practice can and should be objectively assessed.
Nevertheless, as we argue in the full-length version of this paper, substantial shortcomings in the quality of U.S. health care persist. Furthermore, the growth of performance measurement has been accompanied by increasing concerns about the scientific rigor, transparency, and limitations of available measure sets, and how measures should be used to provide proper incentives to improve performance.
The challenge is to recognize current limitations in how measures are used in order to build a much stronger infrastructure to support the goals of increased accountability, more informed patient choice, and quality improvement. In the following paper, we offer seven policy recommendations for achieving the potential of performance measurement.
1. Decisively move from measuring processes to outcomes.
There is growing interest in relying more on outcome measures and less on process measures, since outcome measures better reflect what patients and providers are interested in. Yet establishing valid outcome measures poses substantial challenges—including the need to riskadjust results to account for patients’ baseline health status and risk factors, assure data validity, recognize surveillance bias, and use sufficiently large sample sizes to permit correct inferences about performance.
2. Use quality measures strategically, adopting other quality improvement approaches where measures fall short.
While working to develop a broad set of outcome measures that can be the basis for attaining the goals of public accountability and information for consumer choice, Medicare should ensure that the use of performance measures supports quality improvement efforts to address important deficiencies in how care is provided, not only to Medicare beneficiaries but to all Americans. CMS’ current focus on reducing preventable rehospitalizations within 30 days of discharge represents a timely, strategic use of performance measurement to address an evident problem where there are demonstrated approaches to achieve successful improvement . Read more.
Continue reading “Seven Policy Recommendations for Healthcare’s New Era”
Filed Under: OP-ED, THCB
Tagged: clinicians, Featured Posts, Harlan Krumholz, Hospitals, Measurement, Patient Safety, Patients, Peter Pronovost, Policy, Quality, Robert Berenson, RWJF, Urban Institute
May 31, 2013
This, apparently, is a map of my mind. It’s a little shocking to find out that my mind looks like a sea creature, a bug, or perhaps a vegetable. Actually, “Rob’s mind” and “vegetable” are often used in the same sentence.
Someone suggested to me that I may benefit from mind mapping. I don’t know how to describe it, but I think spatially; I see things abstractly as if I am pulling up from the ground and getting an aerial view of things. I write that way, I solve problems that way, I even play music that way. Maybe it’s tapping on the right side of the brain that is about nuances or about how things relate to other things in proximity or direction. Like I said: it’s hard to describe.
Anyhow, I was thinking about task-management with my patients, wondering what’s the best way to think about it and what is the best design for a system helping with this. Task management is perhaps the most important thing in health care that’s never talked about. Maybe that’s because it makes doctors feel less special, reducing our “magical” knowledge and “miracle” cures to algorithms and checklists. Personally, I take great comfort in systems because they assure me I am not going to forget important things (like setting a reminder to take the trash out on Sunday and Wednesday nights).
Continue reading “The Good Doctor’s Mind Map”
Filed Under: Tech, THCB
Tagged: Patients, Physicians, practice management, practice of medicine, primary care, Rob Lamberts
May 30, 2013
Performance measurement has too often been plagued by inordinate focus on technical aspects of clinical care—ordering a particular test or prescribing from a class of medication—such that the patient’s perspective of the care received may be totally ignored. Moreover, many patients, even with successful treatment, too often feel disrespected. Patients care not only about the outcomes of care but also and their personal experience with care.
There is marked heterogeneity in the patient experience, and the quality of attention to patients’ needs and values can influence their course, whether or not short-term clinical outcomes are affected. Some patients have rapid recovery of function and strength, and minimal or no symptoms. Other patients may be markedly impaired, living with decreased function, substantial pain, and other symptoms, and with markedly diminished quality of life. It would be remiss to assume that these two groups of patients have similar outcomes just because they have avoided adverse clinical outcomes such as death or readmission.
In recommending a focus on measuring outcomes rather than care processes, we consider surveys or other approaches to obtaining the perspectives of patients on the care they receive to be an essential component of such outcomes. When designed and administered appropriately, patient experience surveys provide robust measures of quality, and can capture patient evaluation of care-focused communication with nurses and physicians . And while patient-reported measures appear to be correlated with better outcomes, we believe they are worth collecting and working to improve in their own right, whether or not better experiences are associated with improved clinical outcomes .
Continue reading “4. Measure patient experience with care and patient-reported outcomes as ends in themselves.”
Filed Under: Uncategorized
Tagged: Featured Posts, Harlan Krumholz, Measurement, Outcomes, patient engagement, Patients, Peter Pronovost, Quality, Robert Berenson, RWJF
May 26, 2013
The sharing of patient information in the US is out of whack — we lean far too much toward hoarding information vs. sharing it. While care providers have an explicit duty to protect patient confidentiality and privacy, two things are missing:
- the explicit recognition of a corollary duty to share patient information with other providers when doing so is the patient’s interests, and
- a recognition that there is potential tension between the duty to protect patient confidentiality/privacy and the duty to share — with minimal guidance on how to resolve the tension.
In this essay we’ll discuss:
1. A recent recognition in the UK
2. The need for an explicit duty to share patient information in the US
Continue reading “A Duty to Share Patient Information”
Filed Under: THCB
Tagged: confidentiality, Consumer-driven health care, Data, Healthwise, Leslie Kelly Hall, Patients, Privacy, The Caldecott Review, Vince Kuraitis
May 8, 2013