Patient Access to Electronic Health Records Yields Unexpected Results

Patients are generally enthusiastic about open access to their doctors’ visit notes.

In an old Seinfeld episode, Elaine goes to see a dermatologist about a rash and is left sitting on the table in the exam room, alone with her medical chart. She opens the folder and almost immediately makes a sour face. “‘Difficult’?” she says, reading aloud.¹

Now that most of us have transitioned from scribbling illegible notes in our patients’ ever-expanding paper charts to posting neatly typed missives that are compiled and collated somewhere on the cloud, it may be time to consider what lies ahead in the brave new world of healthcare reform.

The passage of the Affordable Care Act (ACA) has already promulgated some significant changes in the practice of medicine in the U.S. It has created a pathway for previously uninsured individuals to gain access to healthcare, a highly laudable goal. It has established rules to rein in some of the rampant costs that threaten the solvency of Medicare and other government programs. Perhaps the ACA’s greatest impact on physicians has been its development of guidelines that attempt to standardize the practice of medicine by encouraging physicians and healthcare facilities to adopt the electronic health record (EHR) (also see “Electronic Health Record Challenges,”).

Digitized records provide a clearer documentation of patients’ illnesses, which can now be linked to other critical elements of their dossiers, including imaging, lab results and medications. The enhanced portability of the EHR enables access from a variety of devices, both inside and outside the office. This simplifies the exchange of information for patients who are being cared for by a host of providers across several healthcare systems and it also makes it easier for patients to access and read their own records.

Wait a minute! Say again. Aren’t medical records protected documents that should be kept from the subjects they are describing? How could patients read their charts and truly understand what their doctors are saying? This is heresy! After all, notes are bursting with medical jargon and countless indecipherable abbreviations, not to mention littered with typographical errors. Wouldn’t patients be insulted if they read personal characterizations that describe them as being obese, looking older than their stated age or moving sluggishly? Would they be offended to learn that their doctor considered their illness to be of psychosomatic origin? Or would they simply be bored reading repeated iterations of their story, neatly cut and pasted into their chart, the EHR version of the movie, Groundhog Day?

Well, get ready for our brave new world in which patients’ unfettered access to their records will soon become the norm.

Reading the Record

Forty years ago, two Yale University researchers in New Haven, Conn., Budd Shenkin, MD, and David Warner, PhD, predicted that giving patients their medical records “would lead to more appropriate utilization of physicians and a greater ability of patients to participate in their own care.”² It may be hard to imagine, but during that era, patients could obtain their records only through litigation. The passage of the Health Insurance Portability and Accountability Act (HIPAA) in 1996 eliminated the legal barriers to access, and the recent move to digitized records and patient portals to EHRs dramatically simplified the whole process.

Open record systems are already in use, and there is some preliminary data describing their utility. Since 2009, the University of Texas M.D. Anderson Cancer Center in Houston has provided their patients with complete access to their records. One could argue that oncology practices might be best suited for employing transparent record systems. This specialty deals with objective evidence and fairly standardized treatment protocols. How would open records work in internal medicine, in which diagnoses and data are often not as clear cut as in oncology?

In the largest study to date, more than 100 primary care physicians (PCPs) practicing at three disparate locations (an urban teaching hospital in Boston, a rural hospital system in Pennsylvania and an urban safety-net hospital in Seattle) and 13,000 of their patients voluntarily enrolled in a one-year study that evaluated the effectiveness of an open-note system.³ The findings contradict what many clinicians, including myself, would have predicted. In general, patients were enthusiastic about open access to their PCP visit notes, and 99% of those who completed surveys recommended that this transparency continue. The vast majority reported an increased sense of control, greater understanding of their medical issues, improved recall of their plans for care and better preparation for future visits. A remarkable number reported becoming more likely to take medications as prescribed.

In contrast to the fears of many doctors, few patients reported being confused, worried or offended by what they read. The authors suggest that fear or uncertainty of what is in the doctor’s “black box” may engender far more anxiety than what is actually written. Phew!

Because we are all strapped for time, it’s encouraging to note that these benefits were achieved with far less impact on the work life of doctors and their staffs than anticipated. Few PCPs reported requiring more time with visits or to prepare their notes. E-mail traffic from patients remained unchanged. Tellingly, none opted to discontinue participating in open notes at the end of the yearlong intervention period. Most doctors were astonished by how little effect the intervention had on their practices, although a sizable minority reported changing the way they wrote their notes.

In simple English, watch the adjectives you use. I recently saw a lovely patient who happened to have a palpable spleen. I told her how impressed I was by her splenomegaly since I don’t often get to observe this finding. Having been recently discharged from the hospital following a lengthy stay, she replied that she never wanted to be told by a doctor that she might be impressive in any way. We agreed that, in medicine, boring is a beautiful word.

Cynical readers may question whether the data derived from pilot studies in primary care or oncology practices apply to rheumatology, a specialty replete with diagnostic uncertainty.

A pilot study from The Netherlands was among the first to assess the impact of open records in a rheumatology practice.⁴ The investigators focused on 360 patients with rheumatoid arthritis (RA) who were given the opportunity to freely access their entire record using a secure access portal. The results mirrored those described earlier. The majority of patients felt that having access to their notes and results made them more involved in their care. Their knowledge about RA, communications with their care providers and their trust in them all increased.

Clinical practice has taught us that patients who are engaged in their care are more likely to experience better outcomes. Thus, the consistent results from these pilot studies are encouraging and suggest that clinicians should not be apprehensive about adopting transparent medical records. To paraphrase Sir Winston Churchill,

clinicians have nothing to fear but fear itself.

Who Else Wants to Read Our Notes?

Patients are not the only parties interested in reading their notes. The disease coders and note auditors are also waiting in the wings for their opportunity to read what you wrote. After all, medical records have become a huge business. The transformation of the previously quaint medical record industry to a multibillion-dollar concern is a fairly recent phenomenon. Its timeline begins in 2005 with the release of a RAND Corp. study about the future role of EHRs, paid for, in part, by a group of companies that stood to profit by developing and selling EHR systems to hospitals and physician practices. The report predicted that widespread use of electronic records could save the U.S. healthcare system at least $81 billion a year, a figure RAND now admits was overstated.⁵

The study was widely praised within the technology industry and helped persuade Congress and the Obama administration to authorize billions of dollars in federal stimulus money to help hospitals and doctors pay for the installation of EHR systems. These financial incentives have enticed more than 340,000 providers to digitize their medical records. Nearly 60% of practices are now using some form of an EHR. However, the expected savings for the U.S. healthcare system have yet to accrue.

Several reasons may account for this: First, most EHR systems are highly efficient in capturing all forms of medical billing. In fact, this feature has been one of their key selling points. Tuberculosis skin tests, venipuncture, vitamin B-12 injections, throat cultures—you name it—all of these minor charges along with the high-cost procedures will be captured and billed with these new systems. No crumbs will be left behind. Because digitization makes it easy to retrieve notes, supporting data are never lost, and insurers can no longer rely on sloppy record keeping as a reason to reject claims.

Second, any electronic record system provides ample opportunity for clinicians to embellish their notes by using the cut-and-paste keys. A couple of clicks and voila!, a simple office visit can be transformed into a lengthy evaluation, replete with extensive organ system reviews and long-winded family and social histories that help qualify for higher payments. We have all read these repetitious paragraphs that attempt to justify the need for a higher level of payment for the visit. This calculating behavior, better known as upcoding, has spawned a whole new industry of third-party reviewers who try to identify this practice. For a fee, claims reviewers are paid to sift through notes in search of these pastings. They also hunt for specific words that may affect the level of reimbursement. For example, using the term extensive, rather than comprehensive, to describe a careful review of multiple organ systems can lower the payment from a level 4 to a level 3, even though any standard thesaurus might consider these two words to be identical. This modest difference in reimbursement, multiplied over the course of a year’s billings, translates into big bucks and explains why the audit business has become such a lucrative one.

There’s a Code for That!

Of course, no note is complete without an assigned International Classification of Diseases (ICD) code. Although most countries have advanced to the 10th version of this system, the ICD-9 lives on in the U.S., at least for another year. ICD-9 is like an old car: a reliable and steady workhorse that gets you where you need to go. On the other hand, ICD-10 is the flashy sedan; it stores 68,000 codes under its hood, compared with the paltry 13,000 of its predecessor.

But these exploding numbers are misleading and shouldn’t imply a better understanding of disease classification. There may be some legitimate reasons for the exponential growth in codes, but they are hard to find. Coding has run amok. Imagine that you’re an emergency department doctor, looking to code the exam of a patient with burns caused by their water skis catching fire. Yes, this preposterous scenario that defies the laws of physics has its own code: Y93.D: V91.07XD. I would be curious to know how many times this code has been used so far. What if you work near an airport and are asked to evaluate a patient who has been sucked into a jet engine? Well, you would use code V97.33XD. ICD-10 does not, however, distinguish between types of jet engines. One code fits all.

Seriously, let’s move from trauma to rheumatology. In ICD-9, there are eight codes combined for RA and juvenile RA. The coding mavens have declared that just won’t work for the 21st-century rheumatologist. Rather than approaching the issue with logic and clarity, they chose otherwise. First, they selected a few of the least common systemic features of RA, such as myopathy, heart disease and vasculitis. To each of these ailments they added the affected joint(s) and the side of the body (the right, the left and unspecified), creating a mind-numbing maze of coding options. Would you believe there are now 268 codes for RA? Paradoxically, this highly redundant system remains woefully incomplete. In RA, ICD-10 lacks codes for ocular complications, atlanto-axial or cricoarytenoid disease, and CCP antibody status is completely ignored.

According to the website of the American Academy of Professional Coders, “computer science, combined with new, more detailed codes of ICD-10, will allow for better analysis of disease patterns and treatment outcomes that can advance medical care. These same details will streamline claims submissions, because these details will make the initial claim much easier for payers to understand.”⁶ Really? It seems the best interests of clinical practice and medical billing do not always intersect.

Is Boring Best?

Putting pen to paper makes us more creative. Templates dull our creativity. We are too preoccupied with checking boxes and entering the requisite data that allow us to move to the next screen. By eliminating the free-form note, we have lost our ability to highlight our impressions of the patient’s personality. Further, there is no box to enter descriptive adjectives. Pleasant or perky, surly or sedate will have no role in the soon-to-be transparent EHR.⁷ We used to embed these words as a form of code that provided future caregivers a glimpse into the temperament and the mood of the subject. Nowadays, boring notes might be better. Just ask my patient.

Simon M. Helfgott, MD, is associate professor of medicine in the Division of Rheumatology, Immunology and Allergy at Harvard Medical School in Boston.

References

1. Rabin RC. Project puts records in the patients’ hands. The New York Times. 2012, Jan 9. http://www.nytimes.com/2012/01/10/health/policy/project-puts-records-in-the-patients-hands.html?_r=0.
2. Shenkin BN, Warner DC. Sounding board. Giving the patient his medical record: A proposal to improve the system. N Engl J Med. 1973, Sep 27;289(13):688–692.
3. Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Ann Intern Med. 2012 Oct 2;157(7):461–470.
4. van der Vaart R, Drossaert CH, Taal E, et al. Impact of patient-accessible electronic medical records in rheumatology: Use, satisfaction and effects on empowerment among patients. BMC Musculoskeletal Disorders. 2014 Mar 26;15:102–110.
5. Abelson R, Creswell J. In second look, few savings from digital health records. NY Times. 2013, Jan 10. http://www.nytimes.com/2013/01/11/business/electronic-records-systems-have-not-reduced-health-costs-report-says.html.
6. American Academy of Professional Coders. ICD-10 FAQ. Accessed 2014, Sep 4. https://www.aapc.com/ICD-10/faq.aspx.
7. Ephron D. Ouch, my personality, reviewed. The New York Times. 2014, Aug 29. http://www.nytimes.com/2014/08/31/sunday-review/ouch-my-personality-reviewed.html?ref=opinion&_r=0.