e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology is a comprehensive guidebook on using e-tools to facilitate the complexities of our health care system. The book illustrates how the communication tools that consumers use every day: digital records, email, the Internet, and smartphones are enabling technologies that help patients empower themselves to take charge of their health care, communicate with their clinicians, monitor their chronic conditions and collaborate with their health care team for better outcomes.

“This 2014 update to the original 2011 edition reflects changes to the Affordable Care Act and underscores the breakneck pace of change in both healthcare and technology. It is a comprehensive, accurate and useful healthcare guide, chock full of statistics, surveys, anecdotal stories including a list of key points and documented sources that close each chapter.” Kirkus Indie Review, June 2014

“The book’s eleven chapters cover everything from managing healthcare costs and records to understanding how preparing for a doctor’s visit has changed over the years and what your legal rights are as a self-advocating patient. The concepts in each chapter are introduced and reinforced with real-life stories that are appropriately suited to each topic. These illustrative stories make the concepts memorable and empowering.”

Forward Clarion Review, Sara Budzik, June, 2014

e-Patients Live Longer

The Complete Guide to Managing Health Care Using TechnologyBy Nancy B. Finn

iUniverse, Inc.

Copyright © 2011 Nancy B. Finn
All right reserved.
ISBN: 978-1-4620-3038-5

Contents

Foreword.....................................................................viiIntroduction.................................................................xiProfile of an e-Patient......................................................xiChapter One..................................................................1Power Up and Communicate with Your Health-Care Providers.....................1Chapter Two..................................................................11Digital Health Records Could Save Your Life..................................11Chapter Three................................................................28Continuous Care Using E-mail, Portals, and Smartphones.......................28Chapter Four.................................................................44e-Patients Go to the Hospital................................................44Chapter Five.................................................................60Patient Safety: How to Ensure Your Well-Being................................60Chapter Six..................................................................74Receiving Care across Geographic Boundaries..................................74Chapter Seven................................................................92Patient-Centered Care........................................................92Chapter Eight................................................................114Web Resources................................................................114Chapter Nine.................................................................143Protecting Your Privacy......................................................143Chapter Ten..................................................................158How to Manage Your Health-Care Costs.........................................158Chapter Eleven...............................................................178Health Care 2050: Your Medical Future and You................................178GLOSSARY OF TERMS............................................................189Acknowledgments..............................................................198Index........................................................................205

Chapter One

Power Up and Communicate with Your Health-Care Providers

Be what you are and say what you feel because those who mind don't matter, and those who matter, don't mind.

Bennett Cerf, Shake Well Before Using: A New Collection of Impressions and Anecdotes Mostly Humorous (1948) p. 249.

The Patient Experience

Jim has asthma. At his office visit, he tells Dr. Oakes, his primary care physician (PCP) of fifteen years, that despite faithfully taking medications prescribed, he is wheezing a lot at night and sometimes awakens short of breath. Dr. Oakes reviews Jim's electrocardiogram (EKG), finds it to be normal, and listens carefully to Jim's heart and lungs. Everything seems to be fine. While Jim waits, Dr. Oakes searches Jim's records to locate his list of medications. They talk for a few minutes about what could be causing this problem. Dr. Oakes hands Jim a new prescription, which Jim will take to the pharmacy to fill. Dr. Oakes also writes orders for a chest X-ray and a pulmonary function test and suggests that Jim return in a month to review the results of these tests and his blood work. All of this paperwork takes time away from the all too short visit, which lasts a total of fifteen minutes.

This is a typical encounter between a physician and a patient. With time restrictionsondoctorsimposedbyinsufficientprimarycarereimbursement and a paper record system that takes the doctor several minutes to search, this office visit is structured so that there is barely time for Dr. Oakes to properly examine Jim. There is never enough time to formulate an evidence-based diagnosis and discuss a treatment plan, let alone talk to Jim about what else is on his mind. Dr. Oakes also writes his comments as they talk, so he is not able to give his full attention to what Jim is saying. The experience is frustrating for both Dr. Oakes and for Jim.

Sandra, a retired teacher with hypertension, has been a patient of Dr. Clarke for twenty years. When Sandra arrives for her annual visit, she is given a clipboard with a paper form that asks her to list all of her medications and fill in her medical history. She observes that this is the same form she filled out last year, as she diligently tries to remember all of the details required. Sandra is escorted into the exam room by a nurse who asks about her general health; checks Sandra's vitals; gets her weight; draws blood and does an EKG—all part of the routine annual checkup. When Dr. Clarke comes in, she greets Sandra, quickly glances at her update form, and reviews a piece of paper that Sandra has brought with her that has a list of blood pressure results Sandra has tracked over the past several weeks. They talk briefly about headaches that Sandra has been experiencing. After a quick but thorough examination, Dr. Clarke asks Sandra to get dressed and meet her in her office, where she sits at a computer terminal reviewing Sandra's electronic health record. With her eyes on the screen, Dr. Clarke tells Sandra that the exam was fine. She asks Sandra to continue tracking her blood pressure and send a weekly e-mail to the nurse, who will review the data for anything unusual. She enters a prescription for the headaches into the computer, which automatically checks the new medication for interactions with other medicines that Sandra is taking and sends the information electronically to Sandra's pharmacy. Dr. Clarke suggests that Sandra schedule another appointment in six months or sooner if the headaches persist or if there are any other problems. She encourages Sandra to e-mail her if she has further specific questions about the treatment plan.

This office visit, which also lasts approximately fifteen minutes, is a little closer to what a twenty-first century e-Patient visit with the doctor looks like. Sandra's information is in an electronic health record, and her doctor uses e-prescribing to send Sandra's medication to the pharmacy, reducing the possibility of medical errors from illegible handwritten prescriptions and insuring a more comprehensive check of drug interactions. The fact that Sandra is monitoring her blood pressure empowers Sandra to be more involved in her health care and, hopefully, this will keep her stable and out of the emergency room. Although the visit is pleasant and efficient, it does not foster the kind of communication and discussion that physicians and patients should routinely experience. The doctor is rushed. She is facing the computer and has her back to Sandra while they talk, so there is little eye contact and personal dialogue. The use of digital technology is a step in the right direction; however, the technology can be intrusive. Although Sandra has a way to connect with her physician between visits, which helps her adhere more rigorously to her physician's recommendations, there are things about their interaction that are unsettling.

What Do You Want From Your Visit with Your Doctor?

When you go to the doctor, you are seeking solutions to specific health issues. You want to be able to talk with your doctor, to feel welcomed, and to be assured that your issues are going to be addressed with respect, competence, and confidentiality. Here are suggestions regarding what to look for:

• A doctor who gives you his or her full attention and listens to what you have to say.

• A doctor who is thorough in examining you and checking your medications, blood pressure, heart, lungs, etc.

• Someone who is caring and compassionate and with whom you have a rapport that enables you to talk freely about your concerns.

• A doctor who is committed to helping you solve your health issues in the most efficient and effective way possible by offering communication channels beyond the limitations of the office visit.

• A physician who outlines all of your options for treatment and directs you to information resources on the Internet or articles that give you more detail than can be covered during the office visit.

• A physician who provides you with specific well-explained guidelines to follow when you leave the office.

What Makes You a Good Patient?

Doctors are human, health care is complex, and time spent with each patient is restricted. As an e-Patient, you must assume an appropriate level of responsibility for your care. You should come to the office visit prepared to provide a complete list of medications that you are currently taking, as well as up-to-date information on other providers you have seen and issues you have been dealing with. You must ask for explanations and guidance when your doctor's diagnosis or orders are confusing or contradictory. You must follow through with those orders, including taking and finishing all medications in the manner they are prescribed and complying with your doctor's request to keep records of your blood pressure or blood sugar. It is important to be forthright, even if it involves embarrassing personal issues. You should come to your annual checkup equipped with a pen and paper to write down comments that are difficult to remember during the visit. Some of the questions you might want to ask and answers you should record include:

• What do you think is causing my symptoms?

• What does this mean?

• Do I need tests?

• What kind of tests?

• When and how will I receive the test results?

• What are my treatment options?

• Do I want to see a specialist and why?

• Do I need medication?

• What kind of medication?

• What are the side effects of the medication?

• Are there lifestyles changes that I need to consider?

• When should I see you again? Can I ask you questions via e-mail?

• Can I view my test results?

Effective doctor-patient communication is critical to the delivery of appropriate health care. Your relationship with your medical provider and your interactions during the clinical encounter can influence your medical outcome and your satisfaction with your care. Open dialogue is based upon your doctor taking the time to listen to you, and your providing honest and complete information. There is no holding back information on drugs that you are taking, both prescription and over the counter. Your physicians need full, factual information about you in order to make a proper diagnosis. With both Jim and Sandra, the rushed encounter left little time for either patient to chat about their current life situation, their stress, their feelings, or other concerns that could have a serious impact on their health.

Studies of asthma patients reveal that when it comes to taking the oral steroids that are often essential for controlling asthma, many patients do not follow the doctor's directions for taking the medication. This is often due to the fact that these patients did not have the opportunity to discuss fully with their physician the reasons why they need medication, what is an appropriate dosage, and when and how to take the medication. (Inhalers can be very different from one another in the way they deliver a dose of medicine). As a result, the patients ignore the doctor's orders. Although they typically fill the prescription, they take their dosage erratically and often stop the medication completely after a few weeks or months. Eventually they end up back at the doctor's office or in the emergency room. Simple communication could help resolve this problem of noncompliance and keep patients more stable and able to control the disease. (1)

According to the Centers for Disease Control and Prevention (CDC), doctor visits in the United States have increased twenty percent in the last five years to more than 1.2 billion visits annually, while the number of primary care doctors across the country is falling. Each of these visits requires an intricate patchwork of information processing and communication. Most medical records are still on paper, (only about one-quarter of physicians have electronic records), although the Federal Stimulus bill passed in 2009 mandated doctors to implement electronic health records by 2014. It will be years beyond that before there is full meaningful use of digital health records, because it is a difficult and costly transition for physicians. Among physicians who do store their records in computer systems, most cannot exchange patient data electronically with other providers that you might see, widening the information gap in your care. As a result, your paperwork sits in isolated files in the possession of a myriad of providers, including your primary care physician, your specialists, hospitals where you have been admitted, labs where your blood and other tests are sent, physical and occupational therapists, alternative medicine specialists, your pharmacy, your dentist, and your health insurer.

In a study conducted by the Agency for Healthcare Research and Quality (AHRQ), which is a part of the Department of Health and Human Services, clinicians reported that in a representative sample of over 1,500 clinical visits, important information was missing in 13.6 percent of the cases. Among these visits, the most common missing information was lab and radiology results (45 percent and 28.2 percent, respectively), letters or dictation containing clinical information (39.5 percent), and patient history or physical exam findings (26.8 percent). When your physician does not have all of the facts, serious consequences can occur, including the need for expensive repeat tests or the possibility of medical error. (2)

Time, Tools, Teamwork

Talking to your doctor requires time, tools, and teamwork. You typically spend more of your day communicating (using the telephone, written word, and computer, or talking with other people) than in any other single activity. These habits provide a unique set of well-developed communication and listening skills. When it comes to your health care, those skills matter. More than 80 percent of the information that your doctor needs to make a correct diagnosis comes from what you say and your medical history. The rest comes from the examination and test results. Unless you accurately describe your problem, it is difficult for the doctor to determine what is wrong. Greater use of digital communication tools—electronic health records, e-mail, electronic databases, patient portals and e-visits (covered in more detail in chapters 2, 3, and 7)—could make a vital difference in assisting your physician in making a more accurate diagnosis and prescribing a treatment, enabling you and your physician to establish a better dialogue. Sending a medical history update form to your doctor in advance of your visit enables your physician to have all of the required information about you. Communicating with your providers more frequently between visits, for non-urgent issues, frees up time for you and your physician to address critical issues during the clinical visit.

Diana is a fifty-seven-year-old consultant who suffers from chronic arthritis and related autoimmune problems. Ten days before her scheduled visit, Diana receives an e-mail from her PCP's office with a link to the portal that Dr. Cooper shares with her patients. The e-mail reminds Diana to go to her private section of the portal and enter any recent problems, test results, or meetings with medical specialists or therapists she has had since her last visit. Early on the day of her appointment, an automated computer program sends a checklist of all the patients on her schedule to Dr. Cooper's smartphone. Just before Diana's visit, Dr. Cooper is able to quickly glance at Diana's portal entries and determine the agenda for their visit. When Diana arrives at the office, she goes directly to a computer terminal, where she scans her medical card. This notifies the staff that she has arrived and brings up her electronic health record. She is escorted to an examining room, where a nurse takes her vitals and keys that information directly into her the record. She leaves that screen visible for Dr. Cooper, who is able to look very quickly at the computer screen to assess Diana's condition. As a result, Dr. Cooper can focus on Diana without the distraction of having to look up information. Dr. Cooper changes a couple of Diana's medications and sends a prescription directly from her computer to the pharmacy. She also sends an e-mail to Diana's rheumatologist to update him and posts links to Diana's patient portal site with her next appointment, all in a matter of seconds. Dr Cooper reminds Diana that if she has any questions, she can send her an e-mail. On her way out, Diana goes to a kiosk where a short survey is on the screen that asks a few questions about her satisfaction with the visit.

The Empowered Patient

Becoming an e-Patient requires you to change your philosophy regarding your health care. Instead of viewing the doctor as the guardian of your care, you must become an integral a part of the medical team taking care of you. There are several actions that will empower you:

• Do not stay with the same doctor if he or she is not meeting your needs. Choose a doctor who uses best practices in diagnosing and treating your problems.

• Gather a health-care team with whom you can collaborate to address your health concerns. Be sure there is two-way discussion about your health-care options.

• Assume responsibility for collecting your health history, test results, and provider notes, and bring that data with you when you meet with your physicians.

• Always arrive at your health-care provider's office with a list of issues prioritized according to what is most important to you. Elevate the quality and efficiency of your interactions with your health-care providers at each visit and set clear expectations regarding what you expect.

• Insist on fast access to medical attention when you have a serious problem, including same-day visits, whether online or in person.

• Seek advice and information on appropriate Internet resources to help you understand your problems, issues, medication side effects, and treatment options.

• Understand your health insurance choices.

• Arrange for a patient advocate when you are too ill to be your own advocate.

• Speak up when you are uncomfortable with what your physician might or might not be doing.

(Continues...)

Excerpted from e-Patients Live Longerby Nancy B. Finn Copyright © 2011 by Nancy B. Finn. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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