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PHRs: Where Are We Headed?
Health Data Management Magazine, April 30, 2008
Personal health records are in the spotlight at center stage now that two technology giants—Microsoft and Google—have both launched high-profile projects to support PHRs. The debate on what long-term role — if any — PHRs will play in improving the quality of health care while cutting costs is intensifying.
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Privacy advocates are declaring “not so fast” as they point out that Microsoft, Google and a growing list of other technology vendors are not “covered entities” under HIPAA and thus cannot be held accountable for complying with this federal law’s data privacy and security rules. They are cautioning consumers to take an extremely close look before they leap into PHRs from these vendors.
A broad array of players, even including some technology vendors, are advocating expansion of HIPAA or passage of new federal regulations to ensure that PHRs are secure and the data they contain remains private.
Meanwhile, the end point—the “ultimate PHR,” if you will—is far from clear. Many observers have concluded that we’ll likely wind up with several PHR models from which consumers can pick and choose.
For now, some PHR projects are leveraging communitywide health information exchanges or a health record bank (see sidebar). Others are tethered to data from a single integrated delivery system. And some are initiated by employers (see sidebar, below).
“If we’re really consumer-oriented, we have to acknowledge that it’s up to the individual how to frame a PHR to meet their needs by offering a variety of options,” says Linda Kloss, CEO at the American Health Information Management Association, Chicago. The trade group has created a Web site, myphr.com, that educates consumers on their options.
For now, it’s difficult to assess whether PHRs ultimately will prove to be a passing fad or a ubiquitous technology.
A Definition?
Representatives from every health care sector continue to debate how a PHR should be defined. But there’s a growing consensus that, ideally, personal health records should somehow gather data from multiple sources, including, for example, the electronic health records of physicians and hospitals, the medication records of pharmacies, the test results from labs, the claims data from payers, and the patient’s own notes, such as information about their blood sugar levels or weight changes.
Realizing this ideal, interoperable, all-encompassing vision of a PHR will be a huge challenge. For now, most PHRs remain in the very earliest stages, with hundreds of models for how they should be assembled.
Google, Microsoft and a few other technology firms envision providing a national platform that consumers can use to store PHR data, often also using technologies from PHR vendors.
Meanwhile, some consumers are simply filling out electronic forms on their own and carrying them around on USB flash drives or storing them on their computers at home.
And some enterprising physicians are helping their patients select a PHR option that best fits their needs.
“We don’t know enough at this point to know which PHR model will prove best,” says Margret Amatayakul, president at Margret\A Consulting LLC, a Schaumburg, Ill.-based firm specializing in electronic records. “A lot more physician offices need their own EHRs before they start having a PHR that they’re supposed to rely on for information.”
As the consultant works with group practices adopting EHRs, she’s finding that “they generally envision PHRs as the last thing they’ll implement.”
Nevertheless, Amatayakul says a PHR that’s linked to providers’ EHRs could be e xtremely valuable in cutting costs related to redundant tests and reducing workloads in taking patient histories.
PHRs will prove especially valuable to the chronically ill who see multiple providers and need to keep track of records from all of them, says Kate Borten, president at the Marblehead (Mass.) Group, a consulting firm that focuses on privacy and security issues. Otherwise, it’s far too soon to tell whether PHRs will have broader appeal, she argues. “I’m not sure why most people would want to have a PHR.”
Likewise, Robert Cothren, director of the clinical information systems practice at Northrup Grumman Corp., Los Angeles, says the value of PHRs to most consumers has yet to be well-demonstrated. “Until EHRs are more widespread and physicians are more integrated with other providers and are sharing electronic information, PHRs don’t have a great deal of value,” he argues. The consultant for the systems integration firm says the industry has yet to carefully articulate the business case for PHRs.
A Revolution In The Making?
In contrast, PHR advocates say an all-encompassing, longitudinal record of treatment, complete with patient’s notes, could help revolutionize the culture of health care.
“The cultural change is that clinicians and their patients must have a partnership relative to the patient’s health care and wellness,” says Holly Miller, M.D., chief medical information officer at University Hospitals in Cleveland. “It’s changing the focus in the United States toward preventive medicine.”
The physician argues that PHRs can play an important role in helping stem what she calls an “epidemic of preventable diseases” related to lifestyle choices, such as overeating and smoking.
Complete PHRs could help doctors make sure that patients receive appropriate educational materials and are reminded of the need for follow-up visits and tests, she says." Miller strongly argues that waiting until all doctors use EHRs in their practices before moving toward PHRs is impractical. “Essentially we are living in a market where consumers have become interested in personal health records and will drive the development and use of PHRs.”
Another PHR advocate argues that EHRs are an essential, basic building block of PHRs. " " Stacy Kahn, M.D., co-owner of the three-physician Fox Prairie Medical Group in St. Charles, Ill., contends that some sort of patient data repository is needed to gather electronic records from hospitals, clinics and other sources. But she acknowledges that building the mechanisms to make that happen will take time, so providers must take baby-steps toward full-blown PHRs.
For example, when referring a patient to a specialist, Kahn sends along a summary of the electronic record created using software from NextGen Healthcare Information Systems Inc., Horsham, Pa.
The suburban Chicago practice worked with a consulting firm, e-Medapps, Schaumburg, Ill., to use a standard called the Continuity of Care Record to extract data from the NextGen system and post it on a secure Web portal.
Just as she would never send a patient’s full paper record to a specialist, so too Kahn says she tailors electronic documents to the specialist’s needs, rather than sending the full EHR. “I want a standard that allows me to communicate electronically with disparate providers and ultimately my patient,” she says.
Like many other industry observers, Ross Martin, M.D., believes that the ideal PHR model incorporates the use of interoperable records systems from multiple providers, linked by some sort of “value exchange market.”
“The real promise of PHRs is that they enable data sharing in a way that fulfills the whole notion of balancing privacy, security and access to information,” says Martin, director of health information convergence for the life sciences practice at BearingPoint, a McLean, Va.-based consulting firm.
The Privacy Debate
Privacy advocates, however, quest n whether enough safeguards exist to ensure that the sensitive data in PHRs will remain secure.
The biggest potential risks for consumers involve misuse of PHRs by insurers or employers, says Pam Dixon, executive director at the World Privacy Forum, a San Diego-based public interest research group. For example, an HMO potentially could use data in a PHR as grounds for denying enrollment or coverage of a condition, she says. Or an employer might decide against hiring someone if they discover in a PHR that the potential employee has a costly chronic disease.
“We’re in a brave new world here,” Dixon says. “There are clear benefits to digitization, and also risks. If we do things carefully, we can mitigate those risks just as financial institutions have.”
One of Dixon’s biggest concerns is that companies offering PHRs or platforms for the records—including Microsoft and Google — are not “covered entities” under HIPAA. Although these companies tout their tough security policies, “no matter how good a privacy policy is, it can be changed tomorrow, and that’s not strong enough protection for health care files.”
Consumers should carefully consider whether they want to use a PHR that’s not covered by HIPAA and its federal penalties for violating privacy, Dixon says.
Microsoft Corp. conducted extensive consumer research that confirmed the biggest concern about PHRs is privacy, says Grad Conn, senior director, product marketing, for the Redmond, Wash.-based company’s health solutions group. When asked who they trust to store their health data, consumers ranked Johns Hopkins Medicine first, while Microsoft tied with the Mayo Clinic for second place, he says.
“Privacy advocates told us how to design our Health Vault system for patient control of the data, and that’s what we built,” Conn contends.
Those advocates, and many other stakeholders, remain hopeful that the federal government eventually will expand HIPAA to cover technology firms or draft more all-encompassing privacy regulations for the digital age.
“It would be a good thing for this country to enact more generic privacy laws that cover all sectors, not just health care,” says Borten, the security consultant. “But we likely will only see incremental change.”
Cothren of Northrup Grumman laments that “privacy policies in our electronic world are not well-defined.” He calls for federal regulations that spell out in great detail the role consumers can play in the sharing of their records among providers, including their ability to block views of certain information.
Even some PHR vendors are calling for tougher federal regulations to govern their business.
For example, CapMed, a Newtown, Pa.-based PHR firm, “abides by HIPAA policies and procedures” but cannot assure consumers that it’s a covered entity, says Wendy Angst, general manager. So she’d like to see federal guidelines that apply to companies like CapMed to ease consumers’ security concerns.
Likewise, NoMoreClipboard.com assures its clients that it adheres to HIPAA guidelines and doesn’t share data without consumer’s consent, says Jeff Donnell, vice president of marketing. Expanding HIPAA or enacting other federal regulations would be beneficial to vendors and consumers alike, he stresses.
BearingPoint’s Martin would like to see HIPAA modified to require that hospitals provide patients with electronic copies of their records, rather than just paper copies, to ease the movement to PHRs. “That would be cheaper than pulling the paper file.”
While legislators debate potential changes in federal regulations, consumers need to read the fine print on PHR privacy policies to determine if the company hosting the records has taken such steps as prohibiting the sale of data for marketing purposes, says Amataykul, the records consultant.
“PHR vendors should clearly, simply and concisely list their security, privacy a data usage policies in language that consumers can understand,” says Miller of University Hospitals. “And there should be third-party validation that they are complying with their own terms and conditions.” Miller chairs the PHR steering committee of the Healthcare Information and Management Systems Society.
AHIMA’s Kloss advises consumers to “ask tough questions and satisfy themselves that the level of security and privacy is acceptable.
Alternative Models
In the 10 years or so since personal health records first came on the scene, providers, payers and entrepreneurial vendors have launched dozens of models.
But the public spotlight on PHRs intensified recently when both Microsoft and Google launched what they portray as platforms for PHRs that others will leverage to store data.
Earlier, a long list of insurers initiated PHRs in hopes of better educating patients so they’ll stay healthier. These records generally are prepopulated with claims data (see story, October 2007 issue, page 70).
Some regional health information organizations and health information exchanges are attempting to accommodate PHRs. For example, the Louisville (Ky.) Health Information Exchange will use the health record bank model, in which PHRs are stored in a central repository and access to records is controlled by consumers (see sidebar, page 45).
Meanwhile, a growing number of provider organizations are jumping on the PHR bandwagon.
University Hospitals in Cleveland, which has seven hospitals and 150 physician practice sites, is taking the first small steps toward offering its patients a full-fledged PHR.
The organization has hired MedPlus Inc., Mason, Ohio, to build the basics of a PHR that incorporates data from the hospitals’ electronic records system from Eclipsys Corp., Atlanta. In the first stage, the provider will focus on the exchange of data within the organization. “But we hope to eventually move beyond the tethered model so patients can easily go elsewhere for treatment and take their records,” says Miller, the CMIO.
University Hospitals’ executives are convinced that a robust PHR, shared through a regional network linking competing organizations, will slash costs by helping patients lead healthier lifestyles through giving them timely access to information on preventive medicine and wellness programs, Miller says.
In west suburban Chicago, Kahn is a leader in an effort to build a health information exchange linking group practices to three area hospitals. The Northern Illinois Physicians for Connectivity is preparing a white paper outlining the value of an HIE that would enable patients to easily build and access PHRs, Kahn explains.
The physician argues that most patients will rely on their doctors to help them select a PHR. “I can’t imagine a patient getting a PHR without talking to me about it first,” she says. “I’m in a position to populate their PHR, and I’d love to do that for them.”
The No. 1 reason to create PHRs, she argues, “is to engage patients in their health care.”
A pharmacy chain with 102 stores in North and South Carolina is spearheading a PHR experiment aimed at testing whether the records can help improve the health of those with elevated cholesterol and blood pressure.
Kerr Drug Inc. is working with two group practices to educate patients about PHRs from CapMed. The eligible patients will have their PHRs preloaded with medication histories gathered using the pharmacy network of Surescripts, Alexandria, Va. The PHR will be stored on a small USB flash drives that patients can carry with them.
And patients will also access records via the Web, explains Rebecca Chater, director of clinical services for the drug store chain. Participating patients also will receive educational materials about proper medication use and other educational materials about their conditions.
“A personal medication record should be ubiquitous to ensure patient safety for everyone,” she argues. If the experiment goes well, the drug store chain will expand the effort to all the consumers it serves, she adds.
“One area in great need of improvement is the transition from inpatient to outpatient care,” Chater says. “PHRs could eventually improve that process if they were properly utilized.”
In addition to the USB flash drives, CapMed offers consumers four other options for storing their PHRs, including an online record hosted on their Web site.
So far, however, it can only import physician’s records if they use an EHR from NextGen, says Angst, CapMed’s general manager.
Over time, more data will be imported into CapMed’s PHRs directly from hospitals’ and clinics’ EHRs and other sources, Angst predicts. “Over the next five years, there will be a wide variety of electronic data sources for PHRs,” she says. “And we envision mobile phones as a prime tool for interacting with a PHR.”
Similarly, NoMoreClipboard.com expects to move from a model that relies mainly on consumers to enter their own data and fax it to physicians to one where data automatically is loaded from EHRs, says Donnell, the firm’s vice president of marketing.
The company recently took the interim step of introducing software that enables a doctor’s office to call up their EHR and PHR on the same screen to compare data and transfer it as needed.
“As the cost burden for health care continues to shift more to consumers, they will take on primary responsibility for creating a longitudinal health record,” Donnell predicts. “We believe that PHRs will become the central repository for a patient’s health information and will include data from insurance claims, EHRs and a variety of other sources.”
This story is the second in an in-depth, three-part series on EMRs, EHRs and PHRs. The magazine also is running series on revenue cycle management, point-of-care technologies and CIO issues. These four series illustrate our commitment to providing our readers with insightful, concise and timely information on the technologies and business issues that shape their strategic initiatives." " - Greg Gillespie, Publisher"
More information online " To learn more, visit healthdatamanagement.com and search for “personal health records” or visit the consumer health channel." "(c) 2008 Health Data Management and SourceMedia, Inc. All Rights Reserved." http://www.healthdatamanagement.com http://www.sourcemedia.com/
Employer consortium pushes PHRs
A consortium of eight large employers, including Wal-Mart Stores Inc., is slowly moving forward with plans to provide their employees with personal health records.
The Dossia employer consortium, based in Portland, Ore., is testing aspects of the infrastructure, linking data from insurers, pharmacies and other sources to a central repository, says Colin Evans, president. Dossia will approach dozens of provider organizations in the cities where most of its members’ employees work to begin building links to their electronic health records systems.
By the third quarter, Dossia plans to move to the next phase, when employers will roll out the full PHR to subsets of their employees, such as those in certain cities, Evans says. The PHRs will be offered to all 5 million employees, dependents and retirees of sponsoring companies, in phases, starting late this year or early next year, he adds.
The consortium dropped its original vendor partner, Omnimedix Institute of Portland, Ore., and now is using the Indivo PHR technology developed at Children’s Hospital of Boston.
Evans stresses that Indivo is an open source platform and that Dossia’s enhancements will also be provided to others in an open source environment. Dossia is a not-for-profit organization.
In addition to Wal-Mart, consortium members are BP America, Intel Corp., Pitney Bowes, AT&T Inc., Cardinal Health and sanofi-aventis. Each is providing $1.5 million in startup funds and later will pay annual transaction fees for each employee.
“Their motivation is economic,” Evans says. “Most employers see health care costs exploding beyond their ability to control it. We want to get as many employers as possible together to provide the tools to empower employees to become better users of health care.”
Employees will be able to designate which providers can see specific data within their PHR. They will not be able to delete any data, but can add comments to it, Evans says. They’ll also be able to enter information on their conditions.
Much like the new efforts of Microsoft and Google, Dossia is creating a broad platform for central storage of PHR data. The consortium expects to work with various PHR vendors and charge them a fee for transactions through Dossia.
“One reason for the very low adoption of PHRs so far is that nobody wants to enter the data themselves,” Evans contends. “We expect we could easily empower a lot of the PHR applications now available that haven’t gotten very far.”
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HIE opts for free health records bank
After extensive market research, the Louisville (Ky.) Health Information Exchange is adopting the health record bank model for assembling personal health records. But unlike some other organizations experimenting with the model that are charging consumers a monthly fee, this HIE will offer the service free to consumers, providers and payers, says Judah Thornewill, acting executive director.
To fund the effort, the organization will seek grants and solicit donations from participating providers, payers and other organizations, as well as consumers, Thornewill says.
“We think we can build a sustainable business in this way,” he adds. Thornewill estimates startup costs alone will amount to more than $4 million.
Market research determined that physicians and hospitals would not support a PHR project unless a majority of their patients were using one platform, Thornewill says. And consumers expressed serious concerns about the trustworthiness of PHRs, leading organizers to conclude that it was essential that all players serving the area’s 1.2 million residents, including providers, private insurers, Medicaid and employers, must participate.
“Money is the root of all evil when it comes to breaking trust,” Thornewill says. “To build maximum trust, you cannot have a system that’s supposed to save a patient’s life in an emergency, yet charges a fee and turns off service if they don’t pay.”
The HIE’s board, which includes many of the likely participants in the records bank, expects to approve a business plan this month. Then it will begin assessing technology providers, followed by aggressive fundraising in the summer and fall, Thornewill says. If all goes well, a vendor will be selected in early 2009 and a pilot will begin by the following summer.
The records bank will be fed by data from a wide variety of sources, Thornewill says. Consumers, who will control access to their data, will be able to use mobile phones as well as the Internet to view their PHRs. They’ll sign up for the program at their physician’s office or a hospital as part of the usual registration process.
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