Like a recurring dream about having to take a test they didnt study for, some physicians view the idea of patients with electronic personal health records as their own personal nightmare.
Visions of patients handing over a computer disk containing years worth of blood-pressure readings taken every four hours along with random recollections of rashes and muscle strains that physicians are required to somehow make sense of and memorize are followed by thoughts of being sued because there was a kernel of important information missed in the deluge.
Thats why folks like me are terrified of personal health records and what patients will bring to us, internist Michael Zaroukian, M.D., said earlier this year during a panel discussion at the Integrating the Healthcare Enterprise Connectathon, an event that brings electronic medical-record vendors together to solve interoperability problems (and sponsored by the Healthcare Information and Management Systems Society, the Radiological Society of North America and the American College of Cardiology).
While Zaroukian, who is chief medical information officer at Michigan State University, is now backing away from the word terrified, he still maintains there are certainly lots of reasons to be concerned.
The reasons for apprehension that Zaroukian cites include: the volume, usefulness, accuracy and completeness of the records physicians receive from patients; the hours of uncompensated work it will take to slog through them; and the potential for a misdiagnosis if something important gets overlooked.
In some ways, its simply an electronic extrapolation of what weve seen in the paper world, Zaroukian says. The greater the volume, the more likely it is that relevant data will be lost.
Zaroukian certainly isnt the only physician who feels this way.
He has every reason to be frightened by that, and I dont see what he is describing as an improvement over someone bringing in an entire paper chart, says Joseph Heyman, M.D.,a gynecologist and an American Medical Association trustee. I dont blame a physician for worrying about that. I think the beauty of a personal health record is if its a snapshot of a patient and their most important demographicslike their current condition, allergies and medications. Thats entirely different from their entire medical history for their entire life.
Peter Basch, M.D., medical director for e-health at MedStar Health in Washington, says physicians love a (hospital) discharge summary that gives one to two pages of key points. What they may get from a PHR, however, could be something that has no resemblance to a discharge summary at all.
Electronic records make it easier to share more information and images, so often what could be included on one page is now included on 10 and 12 pages, says Basch, an internist who serves on the medical informatics subcommittee of the American College of Physicians.
He says, though imperfect, a quick two- to three-minute oral history taken during an office visit can be more helpful than an extensive PHR.
Its like saying to a patient: Tell me about the rash, Basch says. Dont give me a seven-hour history of every rash youve had in your life.
A valuable tool
Zaroukian says that while things like patient-recorded blood-pressure readings can be useful, the value is not in each particular entry, but in the average and the range of high and low readings.
He says diabetic patients often give him diaries of insulin doses and pre-breakfast blood-sugar levels recorded in meticulously arranged rows and columns, butdespite their neat appearancethe numbers are not distilled into a useable format.
You have to skip between rows and try to average the numbers somehow, but its impossible, Zaroukian says. The data is so poorly organized that it not only does not improve quality, it could contribute to making a bad decision.
Nevertheless, he says that PHRs could be an important tool in developing a partnership with patients, so he gently forces them to use the spreadsheetseither paper or electronicthat he has developed.
Over time, patients see how their own self-management can be improved, so over time they become more interested in doing so, Zaroukian says. He adds that the key is to make it easy to record the information in a usable format so the patient-maintained record is not just a few jewels of data floating in a sea of debris.
Organization and quality of the data are paramount to making the PHRs useful, says Heyman, who has a solo practice in Amesbury, Mass.
I think at the AMA, we believe there can be great value to PHRs and they can save physicians and patients a great deal of time, while helping to avoid medication errors and duplicate laboratory tests, he says. But there is a risk of garbage in, garbage out, and if the record is populated by the patient, there are errors of understanding that can be inputted by the patient.
Basch says its not the PHR alone that will create savings or improvements in care or efficiency, but it could be the tool that helps a motivated patient achieve those results. In fact, all the information included in the popular physician-provided PHR iHealthRecord from Medem, a San Francisco company founded by the AMA and several other societies, is entered by the patient (although if patients choose they can have data automatically flow into their PHR as it is entered in their physicians EMR system).
Some patients will rise to the occasion, and some wont, Basch says. But for patients with diabetes, hypertension or congestive heart failure, daily or weekly recordings of blood pressure and weight could result in useful information that could stem chronic conditions from going bad and save a lot of ER visits.
For these patients with chronic conditions, Basch cites key barriers to primary-care physician involvement in helping develop and maintain a patients PHR: a lack of reimbursement for coordination of care among specialists; uncertainty over the legal responsibilities of helping a patient maintain a PHR; and knowing what the record contains.
With personal health records, one of the issues is the core problem of financing healthcare where information management and discussions with patients are poorly reimbursable in the context of an office visit, he says. Those are currently seen as an uncompensated burden on physicians.
Making sense of complicated and unorganized records can require four to five hours of workwhether the records are on paper or in an electronic formatbut this is accepted in most sectors, Basch says, because theres an unwritten rule that a primary-care physicians time is not relevant and that information management isnt really work.
Theres no payer who will say: Sure, Ill pay you for your time; theyll say: Too bad, learn how to do it in 60 seconds, Basch says.
Steven Waldren, M.D., director of the American Academy of Family Physicians Center for Health Information Technology, says PHRs havent caught the attention of most doctors yet. But for the relatively small portion of physicians who have implemented electronic records, PHRs are known entities and these doctors main concern is on work flow.
Establishing PHR data standardswhat information to include and in what formatwill be important to solving workflow and data-management problems, Waldren says, adding that its time for physicians to get familiar with PHRs.
PHRs are here, and will continue to be, Waldren says. If the healthcare consumer empowerment trend continues to move in the direction its moving, well continue to see growth in the tools available for patients.
Waldren mentions healthcare decision-support applications as one of the tools patients are going to be using soon, and this prediction is already coming true. Last month, Verizon Communications announced it was offering PHRs to 900,000 of its employees, retirees and their family members, and the system would include alerts that would inform users when their care may not be consistent with evidence-based medicine.
Nicolas Terry, co-director of the St. Louis University School of Laws Center for Health Law Studies, says todays doctors are becoming familiar with the online patient, and these patients will become familiar with PHRs. According to Terry, an online patient is one who comes into a doctors office and says, This is what I have, I need you to fix it, and I need this drug.
Other issues Waldren and Terry see being raised are trust in the data and liability concerns related to that data. Where paper records may contain loads of irrelevant data, Waldren says they are harder for patients to edit, and it is easier to hide information from physicians when using electronic formats.
With the current tort system, physicians are very concerned about liability, even when they do the right thing, Waldren says, so along with standardization issues, legal issues concerning privacy have to be worked out before PHRs will get wider use. Do patients have the right to delete something from a PHR? he asks. If they do, do they have to notify physicians that something is missing?
Waldren adds, however, that hes not aware of any PHR-specific liability discussions going on right now and, if there are any, they are just a small part of general discussions concerning liability and tort reform.
While Terry acknowledges similarities between the PHR-using patient and the one who comes to his or her doctors office armed with manila folders filled with computer printouts and reams of documents, the two arent the same. Its certainly new territory for us all, he says. I can certainly understand why doctors could have some apprehension on a very intuitive level.
Terry says PHRs create new business, technical, clinical and legal issues, and a lot of this is because it upsets the traditional model where physicians were undisputed owners of patients health records.
Few policies exist on PHR ownership and control of the data.
The Ann Arbor, Mich.-based Altarum Institute reviewed 30 publicly available PHR privacy and security policies and in January presented a report to the consumer empowerment work group of the American Health Information Community, an HHS advisory panel. The analysis found that PHR providers have little to say about disclosure of secondary uses of data, pay little attention to ownership of data after a business relationship is ended, lack a definition for essential legal terms such as personal health information or de-identified patient information, and dont have formal mechanisms to enforce written policies.
Some experts have recommended letting market forces resolve the issues and have counseled against mandating policies and standards because they fear it will stifle innovation. But Basch thinks a lack of guidance has hurt the market. Bad policy can be fixed; no policy makes me nervous, he says. Im troubled by the idea that things will work themselves out.
Terry also says federal privacy regulations contained in the Health Insurance Portability and Accountability Act of 1996 have not kept pace with technology, adding that whats needed is a global privacy standard that is applicable wherever healthcare information is stored, but the tricky part is finding the political will to open the HIPAA black box.
Geoffrey Gifford, a partner and founder of the Chicago-based law firm Pavalon, Gifford & Laatsch, says basic legal standards apply whether the patient brings in a box of paper files or a disk filled with irrelevant data. I think the rules are still the same, says Gifford, an attorney specializing in medical negligence and product liability.
The standard of care is the standard of care whether its electronic records or paper; you have a duty to look at them if the records are pertinent to the treatment youre rendering, he said.
The records dont need to be memorized, but they should be scanned for information relevant to the purpose of the patients visit to the doctors office, he says.
Lonny Reisman, M.D., an internist and cardiologist, is the founder and chief executive officer of ActiveHealth Management, a health management and data analysis company that launched its own PHR in January called MyActiveHealth. Reisman says that common sense still applies.
Having information presented in a PHR doesnt present a higher risk than not asking the right question or not checking results of a test that you asked for, he says.
Debra McBride, vice president of Aon Risk Services of Minnesota, a division of Aon Healthcare that advises hospitals on risk management issues, says she doesnt think a physicians risk is increased when they accept a PHR, and that physicians should not be afraid to ask their patients: Whats important in here and why is it important to you?
Its the same risk as having a bankers box of medical records from the Mayo Clinic, says McBride, who is also an attorney and a registered nurse. They shouldnt be afraid of the informationplus theyre not receiving it in a vacuum. Theyre getting it from a patient whos sitting in front of them. Ask for some guideposts.
Edward Fotsch, M.D., CEO of PHR-provider Medem, says that was something he rarely experienced during his years as an emergency medicine physician, ending in the early 90s. I saw 10,000 ER patients, and I can remember on one hand the number of patients who had any documented information when they came in, he says. Fotsch says much of the confusion surrounding PHRs stems from a misunderstanding of what they are.
A disk with a mishmash of information is not a PHR, because I could call my dog a Ferrari if I wanted to, but that doesnt make him one, Fotsch says. A personal health record is, by definition, an online collection of structured data.
AHIC has recommended that HHS adopt standards on medication history, registration information and technical specifications for moving data, but they havent been adopted yet.
Web vs. desktop models
While agreeing that standards are needed, the AAFPs Waldren disagrees that PHRs need to be Web-based. Although he thinks that Web-based models will eventually dominate the field, Waldren says there are desktop PHRs available that are networkable.
But Fotsch wonders if the models mentioned by Waldren allow secured online communication between physicians and patients. Without that, Fotsch says a PHR is like an automated teller machine with no money in it that only allows you to check your balance.
Fotsch says a PHR should resemble a continuity-of-care record or continuity-of-care documenttwo vetted and accepted formats for transmitting basic patient-care data. The PHRs should have defined fields where particular types of data should be entered and displayed, and they also should feature a secure e-mail connection between patient and physician.
Theres a structure around a personal health record, Fotsch says. So, if you say you accept a personal health record, you know what youre accepting.
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