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  • "Piecing together the PHR" (inglês)
  • "Your Health Data, Plugged In to the Web"
  • "Germany's Barmer begins personal health record trial"
  • "Employers Taking Long-View Look to PHRs"
  • "Cisco sees return on staff PHRs"
  • "Survey finds seniors satisfied with using PHR to manage Health"
  • "eHealth Records Option Extended To Families"
  • "Dossia, Google Health require aggressive action"

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Molly Merrill, Associate Editor – Healthcare IT News

January 27, 2010 

CAMBRIDGE, MA – Without aggressive action, personal health record platforms Dossia and Google Health may be in danger of fading into the background, according to an analyst. Dossia and Google Health, along with Microsoft HealthVault, are the top players in PHR platforms.

The main difference between Dossia and Microsoft HealVault is that they are built on two different operating models, with two different customer bases, said John Moore, founder and managing partner of healthcare IT analyst firm Chilmark Research, based in Cambridge, Mass. While HealthVault is targeted more toward the clinical space, Dossia's purpose is to serve the employees of its founding members.

Vanguard Health System, a Nashville, Tenn.-based healthcare company announced earlier this month that it plans to roll out Dossia to its employees, making it the second Dossia founder - after Wal-Mart - to implement the platform.

The Dossia Consortium is made up of nine other Fortune 500 companies: Applied Materials, AT&T, BP America, Cardinal Health, Intel, Pitney Bowes, Abraxis BioScience, sanofi-aventis and Wal-Mart.

In September 2008, Wal-Mart carried out the inaugural deployment of the Dossia PHR, which Moore referred to as a "birthing pain" for the company. He said the platform needed additional work to scale to such a large enterprise, which slowed adoption. 

Governance issues have also contributed to delays in moving the platform forward, he said. "The founding members have a lot of needs they want to see come out of this company." However Moore believes Dossia will begin to ramp up more aggressively in the next 6-12 months.  "The bigger question is what is Google Health doing?" said Moore.

He says Google Health needs to sign on with some significant partners in order to gain visibility and show that they are still a player in the market.
"Right now I just don't get that feeling," he says. 

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By Marianne Kolbasuk McGee - InformationWeek - Outubro 27, 2009

Dossia, whose consortium members include Wal-Mart and Intel, is making it easier for employees' dependents to sign up for electronic health records. 

During open-enrollment season for employee health insurance plans, employer consortium Dossia has added new functionality to the electronic personal health record that's offered to millions of workers.

The new capabilities allow employees' dependents --including spouses and children -- to also create their own lifelong personal health records.

That sounds easier than it's actually been for Dossia to offer. Complex legal, privacy and other issues that vary from state to state, as well as involve federal regulations, make it complicated to offer a one-size-fits-all solution for all users of personal e-health records, especially when it involves the creating records for family members whose ages and health concerns vary.

Non-profit consortium Dossia was launched three years ago by several large employers, including Intel and Wal-Mart, in an effort to empower workers to take better control of their health and wellness by providing them e-personal health record tools to access their health information via the web.

Other Dossia member companies include AT&T, Applied Materials, BP America, Cardinal Health, Pitney Bowes, Abraxis BioScience, Vanguard Health Systems, and sanofi-aventis.

When Dossia launched, it said it would provide member employees and their dependents the ability to create and control e-personal health records that include data from outside sources, such as lab data and claims information based on the employers' provider of health benefits, for instance.

However setting up Dossia so that employees' dependents can also easily create and manage their own e-personal health records has been more complicated than expected mostly because of federal regulations as well as complex legal issues, said Colin Evans, Dossia CEO.

For instance, the regulations and rules related to dependents under the age of 12 and over the age of 18 vary from state to state. However, even more complex is dealing with the varying rules related to dependents between the ages of 13 and 17, such as whether the dependent adolescent can block parents from accessing the teenager's health information.

"Employees have told us that they want their entire families connected" to Dossia e-personal health records, so that it's easier to keep track of kids immunization records, chronic conditions and other issues that vary among family members, said Evans.

So, Dossia has been spending "a huge amount of effort" working on legal issues while simplifying the enrollment and sign-on processes for using its personal health records, says Dossia CEO Colin Evans. 
"If it takes 12 clicks to get health data, it doesn't feel right" to users, said Evans. Dossia has been focusing on simplifying disclosures, for instance, so that enrolling and using its health records aren't as cumbersome, he said.

Also, the organization has been working to include applets that appeal to users who have different health needs, such as BMI calculators for individuals trying to lose or maintain a healthy weight.

People don't wake up saying, 'gee I wish I [could] open a personal health record,' he said."They say, 'I wish I knew whether Granny is taking her medicine,'" or the kids' vaccinations are up to date," he said.
"We're spending a lot of time on user interfaces and applets," he said. "Diabetics, pregnant women, and patients with ALS [amyotrophic lateral sclerosis or Lou Gehrig's disease] all have very different health needs," he said. 

Of Dossia member companies, so far, Wal-Mart has achieved the largest rollout of the e-personal health records, said Evans. Other member companies, including AT&T (NYSE: T), Cardinal Health, Vanguard Health and Pitney Bowes are in various stages of rolling out Dossa personal health records related to their open enrollment programs for 2010 benefits.
To date, Dossia personal health record users number "in the tens of thousands" and are predominantly Wal-Mart employees, he said.

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14 de Julho de 2009 - Molly Merrill - Healthcare IT News

Medicare beneficiaries are using the Internet to help manage their health, according to a Kaiser Permanente survey.
The California-based healthcare organization surveyed 4,560 seniors about their comfort in using computers, Internet use habits and health status, including chronic conditions and prescriptions. The survey revealed that more than 87 percent of Medicare beneficiaries registered to use Kaiser Permanente's My Health Manager personal health record are satisfied or very satisfied with the technology.

"The extraordinarily high satisfaction rate of the survey respondents – all 65 and older – reinforces what we are learning among the general population:  When a PHR like My Health Manager is thoughtfully designed for an easy and convenient user experience, individuals will engage more fully in managing their own health," said Jan Oldenburg, senior practice leader of the Internet services group health portfolio at Kaiser Permanente.

"The biggest surprise from the survey was discovering that the typical Kaiser Permanente Medicare beneficiary who is registered to use My Health Manager is very comfortable with computers, using the Internet daily and reviewing their medical record online a few times each month," Oldenburg said.

According to the survey, respondents enjoyed using My Health Manager to make appointments, e-mail one's doctor and review test results, but they were most happy with the prescription refill feature. The survey also showed that most respondents reported being in good or better health (70 percent), and that members who reported being in excellent health are significantly more engaged in their healthcare than those who said they are in poor health.

"As people age, they become less mobile," said Oldenburg. "My Health Manager increases a patient's access to caregivers and health information from their own home. Having these capabilities online helps meet the healthcare needs of older adults." 

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21 Aug 2008

Jon Hoeksma - eHEALTH MEDIA

Managers at network technology giant Cisco Systems say the company is saving more than $4 for every $1 it invests in its employees' health care using personal electronic healthcare records.

In an evaluation of a pilot programme involving 600 staff at the company has concluded that employees who become involved in their PHRs are healthier and more productive at work.

The evaluation concludes that staff who use PHRs make fewer visits to the doctor, and their employer's health care costs are reduced. The results are part of a pilot program begun with the Palo Alto Medical Foundation three years ago.

Cisco is paying a €40 ($60)-per-year subscription per employee to participate in the service.

In addition to the 600 staff currently enrolled Cisco says it is working to expand the program to more employees and dependents.

Paul Tang, vice president and chief medical officer at Palo Alto Medical Foundation, said initial results of the pilot program found that 87% of employees spent less time away from work; 72% of employees said they reduced their number of physician office visits; and 61% of employees said they preferred online contact with their physicians.

According to the San Jose Business Journal nearly half of the Palo Alto Medical Foundation's patient base is online. The foundation uses an electronic health record system from Epic Systems Corp, combined with a PHR that can be accessed by patients.

Jon Hoeksma


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April 7, 2008  - by John Moore

Over the past couple of weeks I’ve uncovered a couple of recent reports that add to the growing body of evidence that employers will be one of the key markets for Web-based PHR vendors in the future. Going beyond the simple visibility that efforts such as the employer consortium Dossia platform will bring to the PHR market, employers are increasingly taking a long-term view towards employee health and wellness programs. Employers will increasingly rely on PHRs as a foundational element of their strategy.

Human Resources consulting firm Hewitt released late last week the results of a study it conducted among 500 U.S. employers. One of the most significant findings was that 88% of employers responded that they intend to invest in long-term solutions to keep employees healthy. This was up a whopping 25% over last year’s 63%. Within the report it is also noted:

"…more than 85 percent of companies say they invest or plan to invest significant resources in long-term health and productivity initiatives over the next three-to-five years. In addition, almost two-thirds (63 percent) plan to offer incentives to motivate sustained health care behavior change, and 67 percent will utilize health care data and measurements to drive their organization’s health care strategy".

Clearly, based on the Hewitt survey it appears that a properly structured employer-sponsored PHR that provides employees with health and wellness information (and action plans) along with incentives as well as delivering employers key de-identified population health metrics, will go long ways towards helping employers meet their long-term objectives.

Another interesting, and in my view more comprehensive study, is the recent report from another HR consulting firm, Towers-Perrin. Their report, 2008 Health Care Costs Survey, (warning PDF) surveyed 500 large U.S. employers representing some 10 million employees. What is particularly attractive about this report are the comparisons made between employers that are high-performing, versus those that are low-performing. In a nutshell, high-performing companies will pay on average 16% less in 2008 ($8,532. vs $10,200/employee) for healthcare insurance costs versus low-performing companies.

High-performing companies take a very pro-active approach to managing healthcare costs in comparison to their lower-performing brethren by focusing at a nearly 2:1 margin on the following:

- Motivating employees to manage healthcare purchases responsibly.

- Support employees capability to make sound healthcare decisions.

- Focusing on employee health management (e.g., population health analysis, pro-active management of high risks, disease and chronic care management, etc.).

Each of these three can be supported to some degree by the better PHR solutions in the market today.

The challenge for employers, however, is still a mixture of gaining employee trust and the need to provide appropriate incentives. Sponsoring a PHR for employees may certainly be a step in the right direction, but how that PHR is presented to employees will make a world of difference as to its ultimate adoption and success. As the Hewit study points out, a significant percentage of employees are still hesitant to trust the motivations of their employers and often do not follow-up on health recommendations without incentives. How employers address these issues will ultimately decide the fate of their internal efforts to control healthcare cost increases.

The California Healthcare Foundation has provided some initial guidance, for employers looking to adopt a PHR platform for their employees. While somewhat perfunctory, this will be of some value to those employers just getting started.

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21 Aug 2007

Barmer, Germany's largest insurance company, is to begin a national evaluation of the effects personal health records (PHR) have on patient self-care and health service delivery. The trial is believed to be one of the biggest yet patient-controlled PHRs.

During the course of the study Barmer will offer the system to all of its seven million members across Germany; some will be offered the system for free, while others will have to subscribe to the service. The service will be rolled out late 2007, with details revealed shortly.

Birgit Fischer, deputy chairperson at Barmer, said: "The insured themselves can best evaluate the benefits of a personal health record and provide tips for its practical use."

He added: "Barmer wants to expand what has until now been mostly a technical research discussion to include questions of application from the perspective of insured and patients and to offer the Barmer insured an opportunity to participate."

InterComponentWare AG (ICW) has been selected by the research team, commissioned by Barmer, to provide the PHR that will be used in the three-year study.

ICW will supply its LifeSensor web-based PHR which will provide Barmer members with the ability to actively manage and control their health, including accessing their personal health information where and when they want.

A spokesperson for ICW told E-Health Europe: "The LifeSensor PHR is a personal health memory, so you can store all personal medical information in a secure way and make it available to your doctor and other people."

A key feature of the LifeSensor PHR is that individual has complete control over who may access it, setting specific permissions for their family doctor, clinics or other health service provider. Individual's clinicians and health service providers cannot access the record or add to it until the user grants access.

ICW told EHE that LifeSensor is interoperable with physician practice management systems, the main GP record systems currently used by German doctors and compatible with the national German e-health programme.

The health insurance firm will not have any access to any of the health records of its members. Individuals will retain full control over who they want to access their data. In addition, Barmer members will be able to access services such as telephone advice services directly from within their PHR.

ICW's managing director Peter Reuschel, added: "The web-based Barmer personal health record based on our LifeSensor technology is finally bringing the right of informational self-determination within the reach of insured and patients."

The research project will be designed and carried out by a team led by Dr. Hanna Kirchner, with an inter-disciplinary scientific advisory panel providing support and guidance. Among the issues to be examined will be data security and privacy.

"While we have carried out our own research this has been on a much smaller scale. This is the first big research project on PHR's," said Dirk Shuhmann, ICW's head of communications.

Schumann told EHE that there were already many licenses for LifeSensor "in the high five digits", including "5,000 PHRs in use in Munich". He added that ICW is also talking to other German health insurers and is active Austria, Switzerland, USA and Bulgaria.

Extraído da publicação E-HEALTH-MEDIA LTD.


Microsoft Promises Privacy on New Portal
By Catherine Rampell

Washington Post

Friday, October 5, 2007

Microsoft launched a free, ad-supported online health portal called HealthVault yesterday that allows people to upload their medical records to the Web and share the information with doctors.

Microsoft beat not only the federal government to the punch but also a number of other companies, such as Google and Steve Case's Revolution Health, that reportedly have been working on similar portals. Some privacy advocates are concerned that such sites could expose sensitive medical data to hackers and outsiders, but Microsoft said it has spent the past several years consulting with experts to ensure that HealthVault will keep personal information private.

Several other countries have already implemented nationwide medical-record networks that they say are secure. In Germany, for example, patients can carry all their medical records on a single computer chip.

The U.S. government's attempts to automate doctors' offices have been less successful.

Studies have estimated that creating a nationwide electronic medical-record network would save more than $500 billion in medical costs over 15 years, but doctors are slow to adopt technology that has been commonplace in banking and retail for more than a decade. About 90 percent of physicians and more than 80 percent of hospitals still use paper records, according to Nancy Szemraj, a spokeswoman for the Department of Health and Human Services.

Storing and trading medical records online would be "great for patients, but there's absolutely no business case for doing it in primary care," said Richard J. Baron, an internist in Philadelphia whose practice uses an electronic record system similar to HealthVault. He said the cost of software -- and the risk of using unfamiliar technology in an office without an information technology whiz on staff -- have deterred many of his colleagues. Baron said he doubts that many will be persuaded to switch from paper because of Microsoft's initiative.

Other businesses, notably WebMD and Revolution Health, have offered consumers online storage for health data. For the most part, the services rely on user-generated data rather than data from doctors' or pharmacies' records, and they generally do not allow users to share the data with others. Google has been reported to be creating a platform similar to Microsoft's, but the company declined to comment yesterday.

Other companies are expanding their health-record services. Revolution Health, started by AOL co-founder Case, plans to allow users to download prescription records into their accounts through a partnership with Medco.

"I think what Microsoft's doing is great," Case said yesterday. "I've been saying for several years that the health-care industry needs to change and that the key drivers will be technology and consumerism."

HealthVault works as a sort of depository for medical data.

Consumers can download records such as lab reports or X-rays from their health-care providers' Web sites, or data from digital devices such as glucometers, and enter it into their HealthVault account.

All data are encrypted, and consumers can choose to send any of the information to other health-care providers, family members or even physical trainers. They can also send the medical information to partnered applications on other Web sites; the American Heart Association, for example, has a program that analyzes blood-pressure records.

HealthVault is supported by ads based on search terms. For example, a search for "diabetes" yields information on the disease and links to books on the topic for sale at Amazon.com.

Getting doctors to participate in such services, experts said, would probably require more government regulation.

"Because of the way our health-care system is financed, it's made it hard to raise the capital necessary to make these conversions," said David W. Bates, a Harvard Medical School professor and chief of general medicine at Brigham and Women's Hospital in Boston. "Other countries have single-payer health systems, which makes it easier to pay for the conversion." 

The biggest barrier to digitizing, physicians say, is the lack of federal standards for how the software should work. Those health-care providers who have digitized use different software products that can't communicate with one another.

For the past several years, Health and Human Services officials have worked on standards under which software vendors would store data the same way. They are still determining how to get data to transfer seamlessly from one program to another. In the meantime, HealthVault has worked with vendors to translate records from different programs into a universal format, according to Sean Nolan, who helped design HealthVault.

Some insurance companies have offered free online health record-services, sparking criticism from privacy advocates.

"You have to have lost your mind to give them any more info about you than they have," said Deborah Peel, founder of Patient Privacy Rights Foundation, which helped Microsoft craft HealthVault's privacy practices. "The revolutionary thing about HealthVault is that it gives consumers complete control over their records and guarantees no one can access that information without their consent."

Other consumer advocates have suggested that the online aggregation of data, whether through HealthVault or its competitors, could be good for patients more indirectly.

"It would be nice to have a pool database across millions of patients," said Robert Krughoff, president of Consumers' Checkbook. "You could see, of all the patients who've had a prostectomy [removal of the prostate gland], what percent had what complications. It would be one way to evaluate different procedures and treatments, since we don't have a way of evaluating their effectiveness in the long run now." 


by Kevin Heubusch

What health information is most useful to consumers? That’s a question only consumers can answer, one by one.

The personal health record, or PHR, might lack a common definition, a common data set, a common format, and a short list of sponsors. But it has one thing in abundance, and that’s potential.

PHRs have the potential to promote patient-centered care by providing consumers with information and tools to better manage their health and healthcare. They have the potential to deliver a wide variety of personal and general health information through a wide variety of technologies. Perhaps the best indication of their potential is the many opinions on what they are and how they should work.

But for PHRs to have a future, the healthcare industry must learn what consumers want from them—the different types of information that different types of consumers find useful. If PHRs are with us in five or 10 years, they will be flexible tools that offer consumers a range of data and resources that can be used according to need and interest.

Enter Claims Data

The PHR of the future is richly populated with a wealth of data. In the present, the selection is a little more of a grab bag. As envisioned, consumers are a major supplier of their personal information, and they can request their clinical records from their providers. Some physician practices and hospitals offer views into clinical information they hold in electronic systems. The newcomer to the PHR is claims-based data held by payers.

Claims data weren’t in the picture when PHRs were first envisioned. But with payers and employers now interested in PHRs, claims-based data could move front and center. If current interest holds, claims-based data could become prevalent in many PHRs.

Not everyone is comfortable with that, because claims-based data aren’t created for consumer or provider use. Offering them in PHRs, intended to manage health and healthcare, will take some explaining.

Consumers who receive claims-based data will require explanation of both what the data represent and what they don’t, says Michelle Kornfeld, RHIT, a senior business analyst and charge auditor at Sisters of Mercy Health System in St. Louis. Claims data are generated to describe the resources used to treat the patient, she says. They do not necessarily describe the patient’s condition.

For example, a claim with a diagnosis code representing a heart attack is submitted to describe the resources used by the hospital to rule out or confirm a heart attack. It does not mean the patient had a heart attack. PHR providers must explain this clearly, Kornfeld notes.

In addition, claims data may describe the same encounter differently depending on the setting, Kornfeld says, because different coding conventions apply to inpatient, outpatient, and professional services. Admission to an inpatient facility for chest pains might result in a claim for treating myocardial infarction. The same visit to an emergency department might result in a claim for treating chest pains.

There is another reason for the unease. Properly coded, claims data are quality data. But the complexity of coding for reimbursement, the variety of settings in which it is done, and the long journey that coded data would travel from provider to payer to consumer offer opportunities for incorrect or misleading information to end up in PHRs.

Short on Details, but Abundant

Claims generally can offer three types of data: services provided and dates, lab tests ordered, and prescriptions filled. They might record an emergency room visit or a prescription filled for blood thinners. However, given their purpose, that’s usually as detailed as they get.

If you picture the current explanation of benefits (EOBs) that many payers provide, the information on care received is often very general, says Colleen Goethals, MS, RHIA, an HIM consultant with Midwest Medical Record Association in Schaumburg, IL. “When I get my EOB, it just says ‘lab test,’” she notes. It does not provide the results, and it may not specify the test. In fact, x-rays are described as lab tests on Goethal’s EOBs, she says.

For a payer’s purposes, grouping lab tests and x-rays under diagnostic testing makes sense. For consumers and their providers, the benefit will come from knowing which test was a colonoscopy and which was a chest x-ray. The PHR could offer that additional detail, though the results wouldn’t be available.

Prescription information is equally slight on detail. Claims data may list prescriptions that were filled under a drug plan, explains Paul Tang, MD, vice president and chief medical information officer of the Palo Alto Medical Foundation and chairman of the American Medical Informatics Association. “But you won’t have access to when the drug is stopped, when the dose is changed, or what the instructions are. You basically only have the fact that this drug was dispensed.”

It’s basic information, admittedly, but that ability to compile a simple medication history is one of the most immediate, useful benefits that PHRs are offering this year.

Many Pieces to Complete the Picture

Discussions about the types of data that should go into PHRs revolve around expected use, notes Jeff Miller, vice president of health and life sciences at Hewlett-Packard. “Individuals have different expectations over what they want to accomplish, and therefore certain pieces of data are more relevant to them,” he says. In the big picture, the PHR is about “getting the right information put together in a way that can be coupled with the right tools” to benefit consumers and the healthcare system.

“Ultimately when we think about PHRs, it’s including multiple sources of data,” Miller says. “It might include claims data, it might include clinical data as reported by clinicians from an [electronic] or other type of record. It might include self-reported data, where someone is doing home health monitoring and they’re reporting that data either manually, or maybe the home health monitoring solution actually automatically updates the PHR with information.”

Home monitoring and self-reported data offer some of the most interesting potential for PHRs. PHRs and related technologies allow us to revisit how and where we collect data, Miller notes. “There’s a rich source of data right in our own home and our personal lives that for many patients will provide greater insight into their health conditions and their ability to manage those health conditions.”

In the case of a hypertensive patient, Miller says, “What would be very useful for a clinician is to not just know that this patient was diagnosed as hypertensive—that maybe they were on a calcium channel blocker—but that their blood pressure and weight had seen the following changes over the past three months. That last piece of data, more likely than not, would be self-reported.”

Jon White, MD, is director of the health IT portfolio at the Agency for Healthcare Research and Quality, which funds research on PHRs. He sees an opportunity for patients to use PHRs to communicate their health priorities and worries. “That’s not health data as we might generally conceive of it, but it could be very helpful in their care,” he says. That is a discussion that doctors often have with a patient, but it does not always result in full communication.

The more flexible the PHR in this regard, the more helpful. Goethals, an HIM professional, created a PHR that reads like a history and physical. “It was a new doctor, and I wanted a complete history of things I felt he really needed to know,” she says. “He looked at it and said, ‘This is awesome. It answers all my questions.’”
PHR as Conversation Starter?

The limited information that claims data offer is more health history than many patients currently bring to their doctor visits, say supporters, and it’s enough to get a conversation started between patient and provider. Basic claims data also can serve as a reminder of dates of services and a foundation for a more comprehensive record.

“I think claims data as a building block is great,” says Goethals. “But there is so much information that will never be included. I think that if you realize that, and realize your claims data is only going to be a small percentage of what your true full PHR should be, it’s a good start. It’ll complement the PHR, but it should not be a substitute for the PHR.”

That’s a point Goethals hopes employers and payers offering claims-based PHRs make clear to consumers. She hopes they educate users on other pieces of data necessary to complete their health picture.

As a physician, White says he welcomes any information that can shed light on his patient’s health. A simple list of prescriptions from claims data tied to a pharmacy benefits manager is a start, he says. “Something as simple as someone walking in with their medicine bottles is helpful for me… Whatever fragments of information I can assemble from anyplace, sure, that’s going to be useful.” He is quick to add, “Now, it becomes progressively more useful the richer the information…”

Tang sees a “modest benefit” in PHRs that serve as conversation starters. Like many, he is looking for something more out of PHRs. “It might be a stimulant, but it’s not the right moment. It’s not a teachable moment,” he says—a moment when a physician helps a patient make the connection between his or her health information and better health behavior.

“PHRs can be very transformative, a powerful tool in changing behavior,” Tang says. This can be through something as simple as test results displayed on a graph. “When people see the results of their behavior—whether it’s eating better, exercising, or even taking a pill regularly—then they are more likely to do that behavior,” he says. These are moments when patients are most likely to seek information—to click on a link to learn more about improving their blood sugar, for example—and when a physician’s advice is more likely to stick.Data You Can Use

You can talk about consumer-driven care with payers, and you can talk about it with doctors, White says, but only consumers can make it work.

“We talk a lot about value-driven healthcare,” he says. “The principle is totally fine. But it assumes an educated consumer.” PHR sponsors must be ready to provide support and education in tandem with health data and technology.

The first step in making clinical data meaningful to consumers is to translate it, Tang says. Goethals, too, is an advocate of plain language. Everyone in the hospital may talk in terms of myocardial infarctions and MIs, she says, but consumers talk about heart attacks.

Tang’s practice has programmed patient-friendly names for common diagnoses into its PHR. Physician and patient have different views into the same problem list, and each sees it described in language appropriate to them. Common terms such as LDL, or low cholesterol diet, link to definitions in plain language and to selected Web sites that offer additional information.

The same effort will be required in offering useful claims-based data. “I’m a doctor,” White comments, “and I have a really hard time understanding a lot of the stuff that comes from my insurance company…”

Claims data will have to be “in English and in layman’s terms,” agrees Goethals. “You would have to have almost a new group of experts who understand how to decipher claims into meaningful data” for consumers, she says.

In addition, claims-based data will require an explanation of what they do—and do not—represent. Kornfeld suggests a disclaimer: “These are the recent diagnoses that were submitted to your insurance company. Please discuss with your physician. You may or may not have these conditions.”

The missing piece right now is the patient advocate, Kornfeld says. HIM professionals can work with consumers to understand the types of data in their records. For clinical data, she says, they should direct patients to their clinicians, as they have always done.

Different Consumers, Different Needs

For Tang, the PHR’s ultimate goal is providing consumers with “access to all the information about their health and healthcare. That doesn’t say whether it’s going to be in one database or distributed,” he says. What matters is that consumers have their information when they need it.

Figuring out what information that is and how consumers are most likely to use it is key, and not enough work has been done to date, says White. It’s useless to “create a really complete personal health record that no patient ever looks at,” he says.

Part of the work will be learning about the different needs of different users. “We tend to think of the consumer in the singular sense, and I think we need to understand that there are certain segments of the consumer population that have both a different need and a different background in terms of their capability to use information,” Miller says.

For example, people with chronic conditions are more likely to be familiar with raw clinical information such as hemoglobin levels, and they will be better able to relate that information to the state of their health. Providing that same information to other consumers may be more confusing than helpful, at least initially, Miller notes. It is important that the tools and data match individual consumer needs.

Tang’s practice offers patients access to a range of their data, from the administrative and insurance information on file to test results. The practice’s current PHR software cannot display progress notes, but Tang says that in annual surveys to date, patients have not expressed much interest in seeing them.

Otherwise, the practice filters information only as required by California law, which forbids sharing information on HIV, drug abuse, hepatitis, or any tissue samples. In the case of tissue samples, Tang points out, this covers results for common procedures such as pap smears and skin biopsies.

White believes that PHRs should offer the maximum amount of information and let patients decide what is useful. “It’s all information about me,” he says, “why wouldn’t I want to see it?” At the very least, he says, it’s a chance to review provider or payer records and check for errors.

“I think for a long time we’ve really thought of personal health records as mini-electronic health records and that they would contain the same kind of information presented in the same kind of way,” White says. But that may not be what consumers find most helpful. “What keeps me up at night as a doctor worrying about my patients is very different from the things that keep me up at night as a patient worrying about my health,” he says.

“So I think the market needs to consider how people think about their health, and what worries them about their health, and what kinds of things are going to have a benefit to patients in the long-term,” White continues. “And then present that information in ways that they find useful. Is that on a computer screen, on a cell phone, a mailing to their home? I don’t know.

“The big first step is to have people comfortable with having their health information available to them electronically,” White says. “And then things will take off from there. Once people understand the power of that, they’ll want to use it in ways that we don’t know or understand now.”

Living in Interesting Times

In near term, we’ll see simpler health management approaches, helping us better understand and manage our individual health conditions in a very broad sense, predicts Miller. Aetna, for example, is reviewing information in members’ PHRs to identify wellness care that may be missing, such as vaccinations. It’s a first step in helping those who are actively involved in managing their health do a better job.

Near-term benefits are important, because the more sophisticated uses of PHRs—such as advanced transfer of data between patient and provider—are farther off in the future, waiting on greater consumer awareness, provider adoption of electronic records, and standards for capturing, securing, sharing, and employing electronic health data.

PHRs—in the sense of consumer access to their digital personal health information—will change next year and each year after that. The term itself could be left behind as technology and use evolve, especially as focus shifts from “record” to access. As the fortune cookie says, White sums up, “May you live in interesting times.”

Meanwhile, he is optimistic. “I have faith in the system, that eventually we’re going to come out with good tools and good sources of information and good ways of doing this.” As part of that process, he says, much will come and go. “I think useful things will rise to the top, and other stuff will blow away in the wind.”

Kevin Heubusch (kevin.heubusch@ahima.org) is managing editor of the Journal of AHIMA.
Article citation: Hbusch, Kevin. "Piecing together the PHR." Journal of AHIMA 78, no.4 (April 2007): 28-32