EMR 2015: An evolving concept

Personal health records could give doctors better access to a patient's medical history.

By Tyler Chin — Posted May 9, 2005

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About 60% of Americans want a personal health record. President Bush wants all Americans to have one. But what in blazes is in a PHR? And what are you supposed to do when patients ask for one?

The concept of a PHR is evolving, but the Connecting for Health task force in 2003 defined a PHR as an Internet-based set of tools that allow patients to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it.

A PHR generally is understood to be an online record patients create and own and "is a subset of all the electronic medical records of all the places that they have ever been," said David Garets, CEO of HIMSS Analytics, a market research company owned by the Chicago-based Healthcare Information and Management Systems Society. This differs from the electronic medical record of today, which is the information system that doctors and hospitals install in their offices, and the legal record that they, not the patient, own, he said.

The lack of a standard definition, combined with the lack of physician adoption of EMR software systems, have kept PHRs grounded. Other major stumbling blocks to widespread adoption include professional liability and privacy and security concerns.

But since President Bush set the goal of electronic personal health records for all Americans as part of his effort to build a national health information network within 10 years, PHRs have hit the headlines and have been discussed at national health care information technology conferences.

A central tenet behind PHRs is that if patients are encouraged or given the means to assemble data from every physician or hospital they've ever gone to, they will become more empowered, more active in their care and more able to correct inaccuracies in their records. Another is that physicians will gain access to information that is often unavailable at the point of care, thus improving care, improving patient safety and lowering costs.

David Brailer, MD, the country's national coordinator for health information technology, is expected to release specifics on the Bush plan for implementation sometime this year.

Last year, the AMA adopted a policy to work with Congress and health plans to appropriately align incentives as part of the development of a national health information network so that the cost of implementing technology won't disproportionately fall on physicians. The AMA's position is that initiatives should be guided by the cost to private practice physicians, security of electronic records and standardization of electronic systems. The AMA supports the personal health record in principle and has worked with other groups to determine how it should be constructed.

Different approaches to help patients create a PHR have emerged.

One is based on hospitals providing a secure Internet portal enabling patients to access portions of their medical records and communicate electronically with their physicians. Some organizations offering those portals, such as the Palo Alto (Calif.) Medical Foundation, call that a PHR; others, such as Kaiser Permanente and Park Nicollet Health Services, do not.

"What we're doing is not a PHR. A PHR typically is something offered by a vendor ... where patients can enter in their own information," said Marti Zacher, manager of new business development and offerings at Park Nicollet Health Services. Since February, the St. Louis Park, Minn., health system has given patients online access to a portion of their medical records, including medications, allergies and immunizations, as part of a project expanded this month to include progress notes for its heart center patients.

Another approach is based on patients typing their information on their own computer or paying companies to set up and store their PHRs on secure Web sites or portable devices. In January, for example, Steven Hacker, MD, a dermatologist in Delray Beach, Fla., launched PassportMD, which markets a medical records storage service to both physicians and patients. For $64.95 a year, patients can retain PassportMD to collect their records from an unlimited number of physicians and have those data stored on two credit-card-sized CD-ROMs that they can update twice a year.

"I think this is a step along the way toward [the country] transitioning eventually to a Web-based housing of medical data, but [the CD-ROM offering] is a more reliable, kind of a realistic first step," Dr. Hacker said.

Some observers note there are drawbacks to a patient-maintained PHR. "There's a lot of stuff -- whether it's lab tests or things that the patients aren't necessarily familiar with -- that would be really hard for them to enter on their own manually," said Paul Tang, MD, an internist and chief medical officer of the Palo Alto Medical Foundation, a 600-doctor multispecialty group that since 2002 has offered patients access to their information through a secure Web portal built into its EMR.

When patients access their PHRs, they are looking at the same information that is in their EMRs, Dr. Tang said.

"The difference is that we have translated some of the terms to make them patient-friendly and also put in hyperlinks to define medical terms and phrases to link them to approved sites for more information."

Dr. Tang is "nervous" about patients posting their information on commercial Web sites, because those sites aren't covered under the federal privacy rule, the Health Insurance Portability and Accountability Act. Commercial sites "also may have other business arrangements that you're not aware of," Dr. Tang said. "I'm not saying that they do, but people shouldn't assume that they have the privacy protections of HIPAA when they store their information on a commercial Web site."

But will it be accurate and reliable?

Some physicians also are concerned about how reliable a patient-maintained PHR would be.

Patients initially will be thorough in keeping their PHR up to date, only to eventually slack off, said Andrew Wiesenthal, MD, associate executive director of the Permanente Federation, the national umbrella organization for Permanente Medical Groups.

Dr. Wiesenthal, the clinical lead on a national level for KP HealthConnect, which is what Kaiser Permanente calls the EMR system it is implementing at a cost of $3 billion, bases his prediction on his observations as a pediatrician. With new parents, he said, "for the first couple of years, that baby book is pretty complete. The second kid rolls along and you know, they are a little less diligent about it. By the time the third child rolls along ... they definitely are not keeping the baby book up to date, except for the most scrupulous of people."

With the potential for incomplete information, Dr. Wiesenthal said, "unless there's a demonstration to physicians and nurses that the data in those patient-maintained personal health records is pretty up to date and pretty thorough, they won't rely on them at all. They will ignore them and it will be a big mess."

Over the next two years, Kaiser Permanente plans to make parts of its patients' information available to members through a secure Web site built into its EMR. That information will include lab results, medical problems and medications, and review instructions from physicians and care teams. The EMR doesn't allow display of physician or nurse progress notes, Dr. Wiesenthal said, but patients can request them.

Under HIPAA, physicians and hospitals must give patients unfettered access to their medical records upon request. Before HIPAA, patient access to their records was governed by state law, said Jill Burrington-Brown, a practice manager at the American Health Information Management Assn.

Open access to records

AMA Trustee Joseph M. Heyman, MD, a solo gynecologist in Amesbury, Mass., is more than happy to share information with patients. He often offers a paper copy of visit notes when making a copy for the primary care physician.

"I don't tend to write things in the patient's records that I'd feel uncomfortable with the patient seeing, but I think that I would want to be able to decide what they could see and what they couldn't see [online]."

In March, he enabled his patients to securely create and store their lifetime medical records on his Web site for free. So far, a half- dozen patients that he knows of have created PHRs, but patients have to specifically opt to allow him, or another physician, to see it.

"I can look at it from my side only if they give me permission, and they can also give permission to other [physicians]," said Dr. Heyman, who was a member of a 2004 Connecting for Health task force that reaffirmed its 2003 predecessor's definition of a PHR.

He makes it clear to patients that he won't routinely look at their PHR. "Patients have to understand that just because they enter the information doesn't make the physician responsible for knowing it," Dr. Heyman said, "One of the big issues with a PHR is that patients can enter erroneous information or they can enter information frequently, and the physician can't be responsible for constantly looking at that."

Doctors should be responsible only for the information patients share "on a direct basis with the physician, where the physician actually acknowledges receipt of the information," Dr. Heyman said.

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PHR parts

Organizations that have moved to enable patients to access portions of their medical record online say the information should include:

  • Diagnoses
  • Medications
  • Patient complaint list
  • Drug allergies
  • Immunizations
  • Lab reports

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Patients want information

Most Americans want online personal health records, according to a national telephone survey conducted last year by Connecting for Health, a public-private cooperative funded by the Markle Foundation and the Robert Wood Johnson Foundation.

Statement Strongly
"It's my health information. I should
have access to it anywhere, anytime."
"Anybody can make a mistake. I'd like to
double-check what's in my medical records."
"It's hard to remember everything my
doctor says. I'd like to get an automatic copy of
my doctor's notes and records after each visit."
"I want to be involved in medical decisions
that affect me. Having my own medical record
would help me make better decisions."
"I'd like to have all my health information
in one place and get to it with the click of mouse."

Source: Connecting for Health

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Patient must collect the data

Fulfilling a patient's request for a personal health record shouldn't be a burden for physicians, said Jill Burrington-Brown, a practice manager at the American Health Information Management Assn.

"There hasn't been a huge tide of patients wanting copies of their record since HIPAA's come to be," she said. The Health Insurance Portability and Accountability Act gave patients the legal right to access their medical records.

Physicians also should remember that it is patients' responsibility to collect and maintain their lifetime personal health information. "A doctor doesn't have their PHR; a doctor has some parts of their medical history," she said.

When responding to patients' requests for access to or copies of their medical records, physicians need to follow their state's regulation as well as HIPAA, Burrington-Brown said. Under HIPAA, doctors have 30 days to act on a patient's request, but some states provide for a shorter deadline.

Because states have different rules, it is difficult to outline a standard procedure, Burrington-Brown said. "Certainly, having patients fill out a form and having them sign a proper release is one part of the procedure."

She also suggests doctors ask patients to visit the office to review their medical records and determine what they want. "Most patients don't want a complete copy of their medical record, though they come in asking for that a lot of times," she said. After patients figure out what they want, physicians can give those data in whatever format they are stored in -- paper or electronic.

Under HIPAA, physicians can charge patients a fee covering copying costs, including supplies, labor of copying and postage, Burrington-Brown said.

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