Consumer/Quality Insider: Personal Health Records Part 1
Debra: This is a Healthcare 411 Special Report for the week of November 22, 2005. Healthcare 411 is produced by AHRQ, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services. I’m Debra James.
Rand: And I’m Rand Gardner.
Debra: This week’s program is the first of a two-part Special Report with AHRQ Director Dr. Carolyn Clancy discussing personal health records. She explains what they include, how they differ from electronic health records, their impact on the quality of health care, and how these records can help you in an emergency. Doctor Clancy and AHRQ are strong advocates of personal and electronic health records, which are receiving growing attention and acceptance by health care providers, legislators, and the public. Next week, part two of our discussion will focus more on the technology of electronic records.
Rand: Dr. Clancy, what is a personal health record?
Dr. Clancy: A personal health record consists of all of your medical information stored in one place. This information can include the results of x-rays, a record of prior surgeries that you’ve had, the medications that you take, or laboratory tests. Very, very important to have access to this information if you confront an emergency, if your home should be flooded, if for some reason you were to need urgent medical treatment, the people taking care of you would need to know about that. In a national survey of Americans, seventy percent noted that coordination of their information among their health professionals was a problem. So, about a third of Americans report that they now keep their own records so their health professionals will have all their records when they’re seeing them.
Rand: Why is it so important that we keep personal health records? And why should they be computerized?
Dr. Clancy: Many people get care from multiple physicians, they may go to an urgent care clinic if they need acute treatment or they may need to be hospitalized. Each of these institutions, physicians’ practices, emergency departments, hospitals and so forth--all have their own records. But a personal health record helps an individual give a treating health professional all of the relevant information. It doesn’t exist anywhere else. This is a very important step for individuals to take to play an active role in their own health care. We know that people who play an active role in their own health care have better outcomes. We also know that errors can be made because people prescribing medications or making treatment decisions didn’t have access to information about you because it was stored in someone else’s office or file cabinet. So, it’s very important and a very helpful step if individuals do have a record of their own. Now, the simplest kind of record would be a big old folder or envelope with a lot of paper in it. There’s now growing interest in being able to do this electronically. To have a personal health record that you can keep on your home computer, or that you could keep on someone else’s computer for that matter. This has the advantage not only of being a little bit easier and less bulky but it also would be a back-up that anyone could have a copy of if the information was needed quite urgently.
Rand: Can you talk a little about what’s involved in creating a personal health record? And are there any restrictions to gaining access to this information?
Dr. Clancy: Creating a personal health record requires that you actually access and get copies of all the information that pertains to your care and medical history. So this could include records of treatments, medication lists, lab results, x-ray results and so forth. To do that, to start today, you would need to actually go to a number of physicians’ offices or organizations. You have a right to that information. Occasionally, a practice will charge you a photo-copying fee but the information is about you and you have the right to own a copy.
Rand: How about family history. Is that important to include?
Dr. Clancy: A key component of personal health records would actually be an accurate family history. Having said that, that can be difficult to obtain. Family gatherings and other times when you’re going to be seeing many members of your immediate and extended family would be a good time to be asking people about that kind of information. In the future that, I think, will be obtainable with their permission through a system of electronic health records which will be ubiquitous across the health care system. Until that time it’s going to be requiring each individual to search that out to the extent that they can. Obviously, people who are adopted or don’t know their family history can’t do very much with this.
Rand: Would you please explain the difference between a personal health record and an electronic health record?
Dr. Clancy: Personal health records do not replace or substitute for electronic health records kept by a physician’s practice. A personal health record includes all the treatment information you’ve gotten from a variety of sources. An electronic health record kept by an individual practice will include all of the information about the care that that practice provided but wouldn’t include, for example, care that you got in an emergency department or if you were treated when you were out of town away from your home. In theory, what’s in your personal health record would actually overlap with several office based electronic health records if indeed you saw several physicians. An electronic health record is in essence a computerized version of the kind of information that physicians have historically collected on paper. So it includes information about your name, your medical history, what you’re allergic to, medications, what conditions that you have, what prior treatments that you’ve had, and so forth. There’s a lot of work ongoing right now to standardize the content of electronic health records so that they all look similar. Right now there are a number of different versions. In some large organized systems of care, such as Kaiser and the Veterans Administration, their system-wide electronic health record actually includes a specific module or section for patients. This includes their personal information; you can log on and see what test results you’ve had. It also has additional features such as being able to schedule follow-up appointments as well as being able to learn more specifically about what the lab test was for, what the results mean and so forth.
Rand: Wouldn’t it be a lot of work for a patient to maintain a personal health record?
Dr. Clancy: It can be a lot of work to keep personal health records up to date. On the other hand it can save you a lot of time and heartache later on. And the occasions when it could save you a lot of anxiety aren’t always predictable. Losing everything that you own in a hurricane where you’re flooded out of your house would be one dramatic example. Other examples might be that your home burns down or for whatever reason your doctor leaves practice and your records are archived and hard to get a hold of and so forth. In the health care system today your medical information is scattered widely. That doesn’t mean that your privacy or confidentiality isn’t protected, but the information is literally all over the place. So, a pharmacy may have information about what prescriptions have been filled. If you’ve gone to two pharmacies, that’s two places where that’s a source of information. A laboratory may have results of your lab tests; a radiology department may have the results if you had a chest x-ray or some other kind of test. If you were hospitalized, the hospital has a record. Your doctor’s office has some records. And, of course, your insurance company has information about what benefits you have, what bills have been paid and so forth. So, you can see that the information is highly dispersed. One of the major advantages of electronic health records, both for physicians’ practices, hospitals and other medical care sites as well as personal health records is that it can begin to pull that information together. Because there are many instances in health care where errors can be made or simply poor quality of care provided if providers and patients don’t have all the relevant information. Right now a personal health record would require that patients literally search out that information from a variety of sources, put it together either on paper or electronically and then control it so that they could share it with all their health professionals. There are many efforts underway right now to make that much, much easier. For example, if you are a member of Kaiser or the Veterans’ Administration or you get care from a very large system that has electronic health records, some of those systems actually have a personal health record that is part of the electronic health record so that the information is integrated. In addition, a few of those systems actually allow and encourage patients to update and send in additional information so that patients and providers are literally working from the same page, electronically speaking. It’s going to take us a while to get there so in the short run your assembling all the information needed for a personal health record is a responsibility that you have to claim because it will save you some time and trouble later on.
Debra: This has been the first of a two-part discussion with AHRQ Director Doctor Carolyn Clancy about personal and electronic health records. For more information on these and other health related stories and topics go to www.ahrq.gov. Healthcare 411 is produced by AHRQ, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services. For Rand Gardner, I’m Debra James. Thanks for listening and please join us again next week for the conclusion of our Healthcare 411 Special Report.