What needs to happen is for patients to be hyperconscious, persistent, and skeptical enough to start gathering vital records about themselves and their medical care. The documents they should have handy include all their medical records, as well as a file of any bills, insurance statements, and correspondence with providers about their treatment.
It might seem like a lot of bumpf. But consider, with patience: Doctors value the material so much that they make it their prime order of business in taking on a patient’s care to look fast and first at the individual’s health record.
The information therein, however, does not belong to care givers or any system — it is patients’ “property.” And if it is so crucial to patients’ care, they should not only own it but be able to get it, see it, and, yes, to have it explained to them, in detail, as part of their fundamental right to informed consent. This means they are told clearly and fully all the vital facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom.
In my book, The Life You Save, Nine Steps to Finding the Best Medical Care – and Avoiding the Worst, I list getting and reading these documents or e-files for patients as Step One to improve your medical care.
Seeing and studying your medical record can provide you with invaluable information and insights about your health and conditions, their sustained care, and how well you and your doctor are communicating and understanding each other about it. You’ll learn a ton about how good your doctor is or isn’t. You’ll get an eye-opening and new view of your doctors and your care. Talk to your providers, correct errors, and misapprehensions, and stay atop those records to ensure, for example, that doctors don’t order duplicative tests or procedures, or that nurses and other clinical staff don’t list wrong medications or treatments.
Health care reformers have pushed hard to ensure patients get greater access to their medical records, including what can be perplexing or even inaccurate, hasty doctor notes and observations.
Heather Gantzer, a doctor practicing at Methodist Hospital in St. Louis Park, Minn., and immediate past chair of the American College of Physicians’ Board of Regents, told Cheryl Clark, a contributor to the MedPage Today medical news site:
“100% of medical records have errors. Some of them are nuisances, but some are really impactful and might make a huge difference for [example for] the person who was said to be on antibiotics” but was not.”
Researchers, for example, have raised alarms that doctor notes that are part of patient records too often display racial bias that can be detrimental to treatment. In two separate, published dives into tens of thousands of medical records, researchers found that black patients were 2½ times more likely than their white counterparts to be labeled with at least one negative description, and African-Americans with diabetes were more likely than whites to be labeled with medically disapproving terms including nonadherence, noncompliance, failed or failure, refuses or refused, and, even combative or argumentative, the New York Times reported.
Patients wanting to see their medical records, depending on their hospitals and doctors, may find them in handier fashion than ever, accessible via ever-expanding online, electronic portals.
Big health care systems have raced to offer greater convenience to their “customers” with extensive access to their records. The federal government also has put medical providers under the gun to not only broaden and deepen patients’ access to their records, but also to ensure that incompatibility among various systems does not create roadblocks to their easily moving and sharing information with those allowed to see it. Indeed, as more health-related information gets digitized — think X-rays, test records and the like — these will be part of patient records and should be accessible to them. They also should be conveniently accessible to all of a patients’ given medical providers, potentially eliminating costly, wasteful, invasive, and even painful repeat exams, tests, and procedures.
While a laptop provides big promise for patients tapping swiftly and easily into their records, pragmatism insists that medical bureaucracies will be resistant and challenging. As Stat, a medical and science news site, reported:
“Under federal rules taking effect [Oct. 6,2022], health care organizations must give patients unfettered access to their full health records in digital format. No more long delays. No more fax machines. No more exorbitant charges for printed pages. Just the data, please — now. ‘My great hope is that this will turn the tide on the culture of information blocking,’ said Lisa Bari, CEO of Civitas Networks for Health, a nonprofit that supports medical data sharing. ‘It’s a ground level thing to me: We need to make sure information flows the way patients want it to.’”
Stat also reported that health organizations have thrown up too many, unacceptable obstacles to patients who want access to information that really belongs to them. The institutions may be acting in their own interests, rather than those of their most important clients or customers — patients:
“Health systems, data networks, and the companies that sell electronic medical records determine how much data patients can access, when, and under what circumstances. Meanwhile, private data brokers make huge profits by amassing hundreds of millions of de-identified medical records and selling insights to drug companies, device makers, and insurers without patients’ knowledge or consent. The new federal rules — passed under the 21st Century Cures Act — are designed to shift the balance of power to ensure that patients can not only get their data, but also choose who else to share it with. It is the jumping-off point for a patient-mediated data economy that lets consumers in health care benefit from the fluidity they’ve had for decades in banking: They can move their information easily and electronically and link their accounts to new services and software applications.”
That, realistically, won’t happen in a snap, Stat reported. Patients can expect to encounter roadblocks still in getting their records from resistant medical providers. The 21st Century Cures Act, the federal law that advocates hope will throw open doors, provides exemptions to some records disclosures, which slowly, slowly, slowly, have become more available in limited but increasingly wider fashion.
Document, document, document
While patients hunt and gather their medical records, they also should keep and file in some fashion the blizzard of paperwork that inundates them as they receive treatment: medical bills, insurer statements, correspondence, and receipts.
This material, of course, can have financially beneficial effects, notably if patients have tax advantaged health savings accounts or flexible spending accounts (click here to learn more about these and their differences). In brief, both health programs allow consumers to set aside money in accounts to cover health costs — provided patients can document their spending.
Savvy users of the accounts, of course, just may have spent down their use-it-or-lose-it sums in FSAs, knowing that they could claim reimbursement for an array, sometimes surprising, of eligible expenses.
Don’t look now, but before anyone knows it, it also will be — cue ominous music — income tax time. For those who have spent time dealing in recent times with serious illness or injury, their medical and dental expenses may add up and lead to a consequential federal tax benefit, as the IRS reports on this issue on its website:
“If you itemize your deductions for a taxable year on Schedule A (Form 1040), Itemized Deductions, you may be able to deduct expenses you paid that year for medical and dental care for yourself, your spouse, and your dependents. You may deduct only the amount of your total medical expenses that exceed 7.5% of your adjusted gross income. You figure the amount you’re allowed to deduct on Schedule A (Form 1040). Medical care expenses include payments for the diagnosis, cure, mitigation, treatment, or prevention of disease, or payments for treatments affecting any structure or function of the body.”
By the way, as patients amass key health-related materials, a few other points should be kept in mind: If you received unsatisfactory medical treatment concerning enough that led you to complain, memorialize the problem situation. Jot down notes about staff or administrators or officials with whom you registered your concerns, with dates, times, and their responses. If there’s back-and-forth correspondence, especially if its electronic, be sure this material gets saved somewhere on your computer system where it won’t get erased and cannot be altered. Print this stuff out and file it.
For parents, good record keeping will matter a lot to their children — potentially for longer than many of us might imagine. Talk to your pediatrician about getting and keeping your kids’ treatment files, especially records on any illnesses, injuries, or conditions that are lasting or that your provider calls notable. Information on these matters could be invaluable as your kids grow up, move around, and even when they are adults. As the world has learned during the coronavirus pandemic, keeping reliable vaccination records also is important. The federal Centers of Disease Control and Prevention has handy information on this task on its website, which can be viewed by clicking here.
In my practice, I see not only the harms that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent health care. This has become an ordeal due to the skyrocketing cost, complexity, and uncertainty of treatments and prescription medications, too many of which turn out to be dangerous drugs.
As the health care system has become so mammoth and costly, patients can be overwhelmed by any and all dealings with it. These can be daunting if not downright disturbing and scary. Or maybe they are heartening and welcome, with terrific healing outcomes. Either way, we can better manage our own care when we have an invaluable record of it. We each have a little work to do to build that file, keeping it up to date, in shape, and useful.