American College of Physicians: Internal Medicine — Doctors for Adults ®

Monday, December 3, 2012

Keep the patient's medical history with the patient

What is a "portal?"

In its broadest definition, a portal is a doorway from one place to another. On the internet, a portal is a site that has links to other sites. In health care information technology (IT), the term refers to a feature of an electronic medical record that gives patients the ability to see parts of their medical record.

In each of these definitions there are two important things that are consistent:
--To access what's on the other side, a person must find the portal.
--What is on the other side of the portal is not controlled by the person using it.

This is very important in the area of my concern: health care IT. Our old friend "Meaningful Use" includes the requirement that the electronic medical record (EMR) system must "Provide patients the ability to view online, download, and transmit their health information." In case you've forgotten (deliberately or not), "Meaningful Use" is a program to encourage use of EMR by doctors, paying them real cash money if they meet the prescribed requirements. The main way EMR vendors accomplish this provision is through the use of a "patient portal."

So are portals the answer to patient engagement via online tools? Are they the answer to e-Patient Dave's demand to "Gimme My Damn Data?" I don't think so. They may be a step in the right direction, giving people some of the information they need, but there is still a wide gulf between giving someone a cup of water and ending a drought.

The problem with portals
The problem with portals is that they are too narrow. First, the person must have access to the portal to get what's behind it. Physicians need to give permission for patients to view the information they send to them. But people often have more than one doctor, and not all doctors are on the same record system, which means that the patient has information available behind multiple portals (with the complications that implies).

The second problem is that what is behind the portal is determined by the clinician (or hospital) and the EMR system itself. Patients have access to what they are "permitted" to access, not necessarily what they need.

Some physicians (like me) send pretty much every test result I get on a patient, while others abide by the "no news is good news" rule, sending patients only "bad" results. Some results are sent as summaries, like: "Your chest X-ray was normal" (instead of the actual X-ray report with the typical radiologist's vague "cannot rule out" litany), or "your labs all looked good" (sent this way to avoid having to explain to patients that their low BUN is not a bad thing).

Some of the limitations are put there by the electronic medical record (EMR) vendor. I would love for my patients to see a flowsheet of their lab data over the years, but the EMR products I've used limit the view to the equivalent of an e-mail document, not a flowsheet of discreet data points.

Why is this all important? A more basic question must first be answered:

Why do patients need their data?
There is a wide range of answers people will give to this question, depending on the philosophy of "patient engagement."

To meet requirements. The old-school of medicine says that doctors should be in charge of a person's care, and that information is there for our use in that care. Giving patients information, such as lab results, is viewed as a "Pandora's box," resulting in more questions than answers. "Just trust me with this information. I'll let you know if there is anything bad" is the message sent off. But that money from "meaningful use" is tied to patient communication, and many docs will communicate with patients only as much as is necessary to abide by the "rules."

To make patients happy. This is the school of thought I once subscribed to (betraying much codependency on my part). Did I think it improved care? Not necessarily, but it seemed like what people wanted, and it did provide a safety net once people were used to getting results, as they would contact me if they didn't hear back from me.

To improve care quality. The Annals of Internal Medicine recently released the results of the Open Notes study in which patients were given access to their entire medical record. Going into the study, many participating physicians worried that patients would be confused and have increased anxiety over the results in the record, but the result was the opposite.

Not only were patients happier with access to their charts, they reported significantly better compliance with medical treatment. Physicians were in agreement that this was a step forward in better care, with none of the doctors participating in the study choosing to stop offering chart access when the study finished.

The "Open Notes" study showed something we physicians are reluctant to accept: our patients think for themselves and want to participate in their own care. What the study didn't address (mainly because it was done in large institutions with a single medical record) was whether or not access to the record reduced the overall cost of care through reduction of duplicate services.

If I have a chest X-ray in my primary care provider's office and then later in the week go to the emergency room for persistence of the symptoms, the chances are above average that the X-ray will be repeated. If, however, I walk into the ER with a copy of the X-ray report, the chances drop significantly.

Furthermore, when patients go to the ER or to specialists for the first time, they are required to give their own medical history. Having access to their records will free people from having to remember all of their past information, instead letting the new provider to get it (unfiltered) from the actual record.

The real reason patients should have access
This leads to the obvious conclusion which is now whacking us over the head mercilessly: Patients should have access to their records because they are their records. The fallacy behind a "portal" which severely hampers its usefulness is that it assumes that the "official" medical record should be that of the doctor. Why is this?

We use patients as our "interface" between different medical providers all of the time. This happens because the other interfaces don't work. I often have to ask patients "What did the cardiologist tell you?" or "What happened while you were in the hospital?" as I never got records of either. I change what is in the "official" record based on these kinds of questions. "Are you still taking these medications?" "What has your blood pressure been running?" "Have you changed jobs recently?" These are all things I ask patients, and then, as a good transcriptionist, I change the "official" record accordingly.

Why not put this in the hands of the one whose life depends on it: the patient? Why rely on portals, or health information exchanges? Why not just give all of this information to the patient in a secure patient record? Yes, there could be hacking, and there will be some people who want nothing to do with this responsibility; but there will also be far more informed decisions made by clinicians who have access to the "official" record. We do a huge amount of harm to people by "protecting" them from the information in their own charts.

My goal is to center my care on the patient, and perhaps the most important step in that process is to give them their own records. It is a cornerstone of my new practice. I will contribute to the personal health record and can see it (as long as they give me permission), but in the end, the patients should have their own records. Anything less than that, in my opinion, is acceptance of a lower standard of care, which would go against the central reason I left my old practice and am starting the new.

After taking a year-long hiatus from blogging, Rob Lamberts, MD, ACP Member, returned with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind), where this post originally appeared.

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Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Iowa City, IA, with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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