By Mark Terry
Writer - Washington G2 Reports
06/30/08

Overview

Several significant events have driven public and industry interest in personal health records. In 2004, President George W. Bush outlined a plan for the implementation of an electronic health record that could be accessed by all Americans. Although numerous companies had been in this market for several years, the announcement provided impetus for growth in this area. In 2007 and early 2008, computer giants Google and Microsoft announced their intentions to enter into this market, Google with Google Health and Microsoft with Microsoft HealthVault. In March of 2008, laboratory industry leader Quest Diagnostics announced a partnership with Google Health to provide uploading of laboratory testing to Google's version of a personal health record (PHR).

The U.S. Department of Health and Human Services cites six positive outcomes with the implementation of widespread personal and/or electronic health records.

1. Improved healthcare quality
2. Prevention of medical errors
3. Reduction of healthcare costs
4. Increased administrative efficiencies
5. Decreased paperwork
6. Expanded access to affordable healthcare

Although there are a number of potential barriers to widespread implementation of personal health records, three are the most significant. They are:

1. Interoperability. The various systems need to be able to interact with each other and various computer systems.
2. Privacy and Security. The systems need to provide HIPAA-like compliance, but also have security measures similar to the banking industry and in compliance with a variety of industry standards.
3. Data Modification. In order for physicians to be able to act on medical information, they will need to be confident of the veracity of the medical data. This will at least partly require that they be able to determine the sources and modifications that have occurred to the information in personal health records.

Although there are a number of companies currently in the marketplace offering personal health records, they fall into four broad categories.

1. Standalones. These companies are primarily personal health record companies, such as LifeOnKey or FollowMe. In some cases these companies also specialize or have specialty subcategories, such as MiVia, which was designed for the migrant farmworker population, or LifeOnKey's Diabetes focus or Women's Health focus.
2. Spin-Offs of Information Technology or Software Companies. Most notable in this category are Google Health and Microsoft HealthVault.
3. Healthcare Providers. Examples of this are Partners HealthCare's Patient Gateway and the Group Health Cooperative's MyGroupHealth.
4. Platform Providers. In some cases, the companies are focused less on being the patient/consumer's personal health record, than in providing the platform and/or technology for personal health records. MedCommons is an example of this. Microsoft HealthVault may also fall into this category. FollowMe also is willing to customize their product for other companies, which then provide their own branding.

There are five ways personal health record providers are generating revenue.

1. Subscriptions. Typically, standalone PHR providers charge nominal annual subscription rates ranging from about $25 to $50.
2. Advertising. Google Health and Microsoft HealthVault indicate they will generate income via advertising. It's not yet clear how Microsoft intends to do this, but Google Health has indicated that their product itself will not contain advertising, but will have search boxes that connect to the traditional Google page, which does have targeted advertising.
3. Data mining. Although often mentioned as a possible source of revenue, few companies indicate they are currently selling non-user-identified health data to researchers or pharmaceutical companies.
4. Increased Service. Healthcare providers, in general, acknowledge that their personal health record systems are just part of the service and a happy client will remain with the system. Google Health indicates they aren't in the healthcare business and part of their mission is to drive users to Google.
5. Subcontracting and licensing. MedCommons is focusing on providing their services and platform technology for other users and companies that might want to deliver personal health records. It's not clear if Microsoft HealthVault plans to enter the market in this fashion, but many industry sources suggest it's likely.

Ultimately, what is clear from looking at a cross-section of PHR providers is that there are a number of approaches to dealing with laboratory results depending on the nature of the PHR. Google Health has recently announced a partnership with Quest Diagnostics. This is likely to be the first in a number of similar relationships with other laboratory corporations. The real question, one that remains unaddressed yet, is whether competing labs will create partnerships with Google Health and other PHRs or whether it will become an exclusive and competitive marketplace, where some PHRs will find their services locked out of the market. Another potential question is whether or not a laboratory, independent or affiliated with a particular healthcare provider, is going to be able to provide data uploads to a myriad of different PHRs. Although largely a technical issue, it's hard to see how a laboratory needing to provide results to twenty or thirty different PHRs in addition to requesting physicians and patients, is going to make laboratory medicine more efficient or cost-effective.

PHRs Gain Momentum

In his January 20, 2004, State of the Union Address, President George W. Bush outlined a plan for the implementation of an electronic health record that could be accessed by all Americans. The system was to be in place by 2015. According to the White House Web site (www.whitehouse.gov), patient participation would be voluntarily, and "these electronic health records will be designed to share information privately and securely among and between health care providers when authorized by the patient."

To achieve that goal, the following steps were taken:

• Health Information Standards were adopted. Under the direction of the Department of Health and Human Services, in cooperation with other Federal agencies and the private sector, voluntary standards were to be identified and endorsed.
• Health Care Information Technology Demonstration Project funding was increased to $100 million.
• Federal agencies were encouraged to adopt Health Information Technology.
• A sub-cabinet level position of National Health Information Technology Coordinator was created. This falls under the Office of the National Coordinator for Health Information Technology, part of the Department of Health and Human Services. It's important to note that the Bush Administration's proposal did not break new ground. Numerous companies providing personal health records (PHR), medical health records, and electronic health records or some way of storing and delivering medical information electronically were in existence for several years prior to the Bush Administration's efforts.

The announcement of launches into the health information technology (HIT) arena by Google and Microsoft has renewed media interest in the area, and may signal a renewed velocity and vigor to the market.

Defining PHRs

Like many areas of information technology, there is a great deal of confusion over definitions and acronyms. The following definitions are generally accepted, but reflect significant overlap in routine usage.

Personal Health Record (PHR): A personal health record (PHR) is a health record that is typically initiated and maintained by an individual. They are sometimes also called electronic personal health records (EPHR).

Electronic Health Record (EHR): Typically an electronic health record is an individual's medical record that is maintained in a digital format. Unfortunately, by this definition, there's almost no obvious difference from a PHR. General usage of electronic health records, however, typically refers to a patient's medical record kept by a healthcare institution or physician's office.

Private Health Record: Some users refer to a personal health record (PHR) as a private health record; there appear to be some distinctions between the two in that a personal health record (by some users) refers to a medical record that in addition to medical data created by a healthcare institution or facility or provider, may also include health data provided by the consumer/patient. At least among users who distinguish between the two, a private health record resembles an electronic medical record, but its contents cannot be modified by the consumer/patient.

Electronic Medical Record (EMR): At least by some users, an electronic medical record is a specific type of electronic health record. However, it is essentially synonymous with EHR.

PHR Players

As mentioned in the introduction, there are a number of players, large and small, in this market. Figure 1 identifies a cross sampling of key players in the personal health record market. Some of the companies are spin-offs from major computer or search engine companies, such as Google Health and Microsoft HealthVault. Some are standalone public health record companies such as LifeOnKey, which began in Israel, spread to Europe, and is now making forays into the U.S. market. Some of the companies have specific markets, such as MiVia, which focuses on migrant workers, primarily in California, and MyHIN, which focuses on a specific illness category, in their case, patients with hydrocephalus (patients with hydrocephalus have an abnormal accumulation of cerebrospinal fluid in the ventricles of the brain). Others are part of specific health care institutions such as MyHealtheVet for the U.S. Veterans Affairs, Patient Gateway for Partners HealthCare in Massachusetts, and PatientSite of Beth Israel Deaconess Medical Center (Boston, MA).

A List of Key Players in the Personal Health Record Market

Key Issues in Adoption of PHRs

The Department of Health and Human Services Health Information Technology office cites six broad positive outcomes that adoption of electronic health records will provide:

1. Improve healthcare quality
2. Prevent medical errors
3. Reduce health care costs
4. Increase administrative efficiencies
5. Decrease paperwork
6. Expand access to affordable care

Health and Human Services (HHS) also indicates they believe that interoperable health information technology will bring about the following public health benefits:

• Early detection of infectious disease outbreaks in the U.S.
• Improved tracking of chronic disease management
• Due to the collection of de-identified price and quality information that will provide comparison values, it will allow the evaluation of healthcare based on value. There are at least three significant factors that providers of electronic health records and/or personal health records have to contend with. They are:

1. Interoperability.

In order to make sure that the various EHR, EMR and PHR systems can communicate with each other, a number of organizations have focused on the creation of standards for the systems. Jan Horowitz, Vice President and Chief Marketing Officer for The National Health Alliance for Health Information Technology, says, "We are all working toward widespread adoption of healthcare information technology. There have been a number of organizations formed like ourselves, such as the American Healthcare Information Community (AHIC), which was created by Health and Human Services Secretary Michael Leavitt. Then there are organizations like the Certification Commission for Healthcare Information Technology (CCHIT), and Healthcare Information Technology Standards Panel (HITSP). All of these organizations--differently and in various ways--are working toward the adoption and widespread use of information technology."

The standards are a bewildering mix of acronyms mixing both computer architecture standards and healthcare standards. Susan McDonald, of Waggener Edstrom Worldwide, speaking on behalf of Microsoft HealthVault, says, "HealthVault automatically imports and exports between standards that are meaningful in the healthcare industry, such as WC3 eXtensible Markup Language (XML), HL7 Continuity of Care Document (CCD), ASTM Continuity of Care Record (CCR), Clinical Document Architecture (CDA) and Common Connectivity Device. As well, the HealthVault API is accessible from any modern programming environment, including but not limited to Microsoft .NET, Win32, Java, PHP and more."

Microsoft, of course, is not alone in their attentiveness to interoperability. Every company interviewed for this article cited a variety of standards they are adopting.

2. Privacy and Security.

Obviously, a medical record, electronic or not, held by a physician's office, hospital, or insurance company is supposed to impose significant limitations on who has access to that information. The PHR, because it is largely in control of the patient, further complicates the issue of privacy. Horowitz says, "Obviously there are always going to be issues about what information is shared and who it's shared with. There are people who would not like their medical information shared with anyone, like employers, for example. There might be sensitive information in your medical record and disclosure could be harmful to you. Right now there are no regulations or laws that protect PHR and a patient's privacy and confidentiality. HIPAA (Health Insurance Portability and Accountability Act of 1996) does not cover ePHR, although parts of HIPAA do cover information that's in an electronic health record."

Linda Harnevo, Chief Executive Officer of LifeOnKey, Inc., says, "We call our system HIPAA-plus. It can be very difficult for consumers that want more privacy; it has to be secure. This is why we take safety precautions, something that starts with HIPAA, but goes beyond that. One example; we have different servers for personal information than the servers for medical information. When you access our system, we identify the patient and give them a virtual key. The virtual key identifies the people who can go into the system, which means that whenever the transaction is made for them, they can either see one piece of information or the other, but never both of them together." Donna Halperin, LifeOnKey's Executive Vice President, says, "In other words, it would be almost impossible for someone to connect who you are with the medical information. In that way it's really HIPAA-plus, in that it is very, very safe."

3. Data Modification.

A significant problem hindering widespread adoption of a personal health record is the question of who can modify the data. Adrian Gropper, MD, Chief Science Officer for MedCommons, makes the distinction between a personal health record and a private health record. "There is a big difference, because a personal health record is not something a doctor would necessarily use; the reason we don't say we're a personal health record--and the reason Microsoft is being cautious about not calling themselves a personal health record--is because doctors won't use a PHR. There are a number of reasons, but one is they won't get paid using a PHR, that's one way to think about it. But another reason is that a physician feels like they are legally liable for the information they are looking at. They don't want to be legally liable by looking at information the patient may have changed. There are subtleties around that, but generally it has to do with liability for looking at information they can't necessarily trust; if they get the data straight from the laboratory, they know they can trust it."

Different providers have different ways of handling this. Jonathan Wald, MD, MPH, Associate Director for Clinical Informatics Research and Development at Partners HealthCare, which provides its own PHR called Patient Gateway, says, "The information the patient is able to see, which is essentially a view of the doctor's chart, they cannot directly modify. They can contact the doctor and say, 'The medicine list you have in my chart isn't what I'm taking.' They can say, "My dose has changed on my Lipitor,' or 'I've stopped taking an antidepressant and can you please update your record.' When the doctor or practice updates the record, the patient's view of that record will change because it's a real-time view of what's in that record."

Patient Gateway goes another step, however, and provides an online journal that allows the patient to review and comment on the information they see in the doctor's chart. And in response to the question of what information to trust, Wald says, "Either way, doctors are pretty dependent on the veracity of what the patient is telling them. It's actually their job to document what the patient is telling them, right or wrong, so in a sense it's not a technical problem as much as it is how you are taking a patient history and how good you are at determining what it is. Another thing is, when a doctor gets information from another source that's not the patient; let's say that the patient's blood work is done at another lab than the doctor's office, then the doctor is reliant on the veracity of that laboratory to provide results on the right patient, the right identifier, the right doctor, and again, it could be right or it could be wrong and depends on the level of trust the doctor has with the lab provider."

PHR Provider Sources of Revenue

The ways in which PHR providers create revenue appear to fall into two categories; subscriptions and advertising, or a mixture of both. Google Health and Microsoft HealthVault, still very much in the pilot project stage, do not plan to charge subscription rates, but will create revenue by targeted advertising. Other companies, such as LifeOnKey and FollowMe, charge yearly subscription rates. Some PHRs, particularly if they are part of a healthcare organization or system, do not accept advertisements (except for their own services) or charge fees, but utilize PHRs as a value-added service for their clientele and a potential driver of patient traffic and patient awareness.

Google Health, which is currently operating a pilot program with the Cleveland Clinic, at this time does not place ads on the Google Health screen page. Roni Ziegert, MD, Product Manager for Google Health, says, "One thing that's clear, if we're successful in bringing more control to users, and more people than currently start coming to Google while thinking about their health questions, we expect that more of those people will perform searches on Google. With Google Health, there is a search box just like there is on the Google page, and searches there will take people to the standard Google page, which of course has advertising on it. We would expect that this product would drive increasing traffic to Google.com, which has ads that are certainly a valuable area for advertising. You will notice that there are no ads within the Google Health product."

LifeOnKey, however, operates on a subscription basis. They have three different programs; Platinum, Gold, and Silver. The service fee, which they refer to as a "membership," is $50 per year for the Silver (Basic Plan). The Silver Plan offers the Internet homepage, access to the LifeOnKey search engine and your personal computerized medical file, and secure telephone transmission of medical data via cell phone. Gold and Platinum Plans add additional services including scanning patient medical data history into the file, a personalized "Expanded Disk on Key" for portability, actual collection of your medical data history, regular quarterly medical file updates, and other services.

Group Health Cooperative (Seattle, WA) has a PHR, MyGroupHealth, which operates throughout the state of Washington and is available to patients in their health system. It does not charge a subscription fee, nor does it advertise (except for itself). Ted Eytan, MD, MS, MPH, Medical Director of Health Informatics and Web Services says, "We don't sell data, but our goal is to sell high quality healthcare, so if it enhances our growth--patients know their healthcare is better and more accessible to them--they'll choose Group Health. We're less interested in having people come and go than we are in having them come and stay. This is a perfect thing to support and our data shows that is what's happening."

MedCommons and FollowMe are generating revenue by licensing their technology to other companies and essentially acting as the "platform" for other personal health records. It's not yet clear if Microsoft intends HealthVault to act more as the platform for other PHR companies or if they intend for their brand to remain as a primary player in the market.

Eytan brings up a revenue pathway that looms over the personal health record industry, but to date, the sales of health information accrued on these sites does not appear to be acted upon. The idea is that by stripping the accumulated health data from personal identifiers, PHR providers could then mine the data and sell it to researchers, such as pharmaceutical companies. PHR companies are not saying they will never do this, but so far very few if any are utilizing this as a significant revenue stream.

Laboratory Results and the PHR

Depending on the provider, approaches vary on how laboratory results are incorporated in the PHR. Many treat laboratory results like any other data. Susan McDonald, of Waggener Edstrom Worldwide, speaking on behalf of Microsoft HealthVault, says, "Laboratory results are just like any other health record. HealthVault users can manually upload information into their account or request that doctors fax their information or upload scanned images into their account. In addition, partners have built applications that allow people to import information from their healthcare practitioners into their HealthVault record."

Not all PHR providers use the same approach, however. MyGroupHealth, for instance, posts 200 of the most common lab tests in real time, while others require a one-business-day delay. Partners Patient Gateway has a similar policy.

MedCommons' Adrian Gropper, MD, largely dismisses the issue of patients being able to interpret laboratory data. "First of all, just because you don't understand those lab values doesn't mean you wouldn't want to use them for an independent second opinion, regardless of who ordered them. In general, MedCommons believes people should have 100% access to their medical information, not 70%, not 30%, not the part they can understand. In other words, patients have the right to access 100% of their medical information and the fact that they can't or it is inconvenient is a travesty. The second thing is I believe you're underestimating is that increasingly people are getting together with other patients like themselves. This is going on all the time. When you get fifty patients with the same diagnosis talking to each other online, they get very sophisticated in terms of what they're talking about, and the detailed information, including laboratory information, can be incredibly useful."

MyGroupHealth's Eytan suggests that the raw laboratory data is useful, but requires interpretation. "When you get results from the laboratory computer system and it says normal or abnormal, all that is telling you is that for 100 people, 95 of them will be in this range. The only way for you to determine if you're normal is to talk to your doctor and have him or her look at your health information. What the PHR does is give you the numeric results. You get a link to the Health Knowledgebase, which gives you a lot of information about what that lab does, what a typical range is, and then you share with the physician if that is normal or abnormal for you. You need a physician to interpret it." What is clear from looking at a cross-section of PHR providers is that there are a number of approaches to dealing with laboratory results depending on the nature of the PHR. As mentioned earlier, Google Health has recently announced a partnership with Quest Diagnostics. This is likely to be the first in a number of similar relationships with other laboratory corporations. The real question, one that remains unaddressed yet, is whether competing labs will create partnerships with Google Health and other PHRs or whether it will become an exclusive and competitive marketplace, where some PHRs will find their services locked out of the market. Another potential question is whether or not a laboratory, independent or affiliated with a particular healthcare provider, is going to be able to provide data uploads to a myriad of different PHRs.

PHRs that are a function of a healthcare system, like Partners' Patient Gateway or Group Health Cooperative's MyGroupHealth are offering the service as part of their business model, which is useful until a patient leaves that health system. Portability would then be a significant issue, which may be the real competitive value of independent PHRs such as LifeOnKey, FollowMe or Google Health or Microsoft HealthVault.

MedCommons' Gropper believes that over time there will be three types of clinical laboratory information systems in terms of personal health records. Most laboratories will provide test results first to the patient and the patient will decide what is done with the results. The second category will be laboratories that give the result to the doctor first and then to the patient. "You're already seeing both kinds of laboratories, because when you talk about the genetic testing business, the distinction is very stark between people ordering medical tests online and there's absolutely no doctor involved and or there are doctors that aren't even trained to interpret it, let alone order it."

Gropper notes a third kind of laboratory, which is affiliated with mini-clinics. "So in a sense the world is going to see three different kinds of labs; the mini-clinic, the traditional doc-orders-the-test lab, and the one where neither the mini-clinic nor the doctor is involved at all and the patient acts autonomously and decides what to do with the results."

Gropper goes on to say, "MedCommons is trying to be the technology that links all three of these applications together. In all three cases there's a lab result, but it's being controlled differently under those conditions. Nobody who is running a laboratory wants to ignore the other two; that's just a marketing decision. Right now, a lot of laboratories and mini-clinics aren't making these accessible to patients. But patients are going to start insisting that they deal with the mainstream laboratory business, that they be treated as first-class citizens no matter who they're dealing with."

The Elephant in the Room

Anecdotally, the penetration into the PHR market by computer giants Google and Microsoft would not seem to be positive for competing PHRs. Surprisingly, everyone G-2 interviewed spoke positively about the overall results of Microsoft's and Google's presence in the market, citing that consumer awareness of personal health records was weak; the entry of Microsoft and Google into the market was creating much-needed awareness.

LifeOnKey's Linda Harnevo says, "I think it's a great thing. I'm very happy that they are valuable and have people thinking about the whole system. I'm not as worried as some people seem to think I should be (about the competition). I strongly believe that people will be careful about who gets their information and will choose based on their ability to control it. They will find the place they feel is appropriate for them. I'm not sure people will feel so open to putting their information with Microsoft or Google. But the first thing is, we're happy because people are now creating awareness, which in my view is a big plus for the market."

LifeOnKey's Halperin agrees. "The fact that Google and Microsoft are in the market is really indicative of how important personal records are going to become. Often it's the niche players who come out with the best products and I think we have the opportunity to be one of the strong players in the market. I'm delighted they are there and am confident we can compete with them."

Partners Healthcare's Jonathan Wald, MD, MPH, says, "The context in which people address their health concerns is always going to play out across a wide range of scenarios and there is room for the patient-controlled independent or autonomous PHR like Google might offer or some software company might offer, just as there is a space and appropriate place for a patient portal that's provided by a provider organization. I don't see one necessarily as perfectly suited as the other, but I think both are really important."

Profiles of 7 Key PHR Companies
Microsoft HealthVault

Microsoft HealthVault, currently in beta testing, describes itself as "a new personal health technology platform that lets you gather, store, and share health information online. With HealthVault, users control their own health records, so they can privately share their health information with family, friends, and health care professionals, and have access to trustworthy online health management tools."

According to Susan McDonald, of Waggener Edstrom Worldwide, speaking on behalf of Microsoft HealthVault, "The HealthVault search technology will remain free to consumers and rely on ad-supported revenue."

HealthVault users will be able to manually upload their health information into their account. McDonald says, "In addition, partners have built applications that allow people to import information from their healthcare practitioners into their HealthVault record. People can also request that doctors fax their information or upload scanned images into their HealthVault account."

Microsoft HealthVault indicates they are working with more than one hundred partners across a number of categories to spur health innovation. Some of those partners are:

• LifeScan (a Johnson & Johnson Company): Their blood glucose monitors' results will be able to be automatically uploaded via a computer connection to the patient's HealthVault account using the HealthVault Connection Center.
• Microlife Corporation: Microlife manufactures blood pressure monitors and Peakflow meters. These will be able to connect to the HealthVault Connection Center and data can be uploaded to the HealthVault account.
• Omron Healthcare, Inc.: Omron produces blood pressure monitors and pedometers, which will be able to interact directly with the HealthVault Connection Center.
• Polar: Polar manufactures watches and fitness/physiological monitors, including heart rate monitors. Their heart rate monitors will be able to upload information, via infrared, to the HealthVault platform.

In addition, Microsoft HealthVault has created partnerships with a number of organizations and PHR groups, including;

• Allscripts
• American Heart Association (Blood Pressure Management Center)
• CapMed. "The CapMed icePHR combines the award-winning CapMed Personal Health Record with the power of the Microsoft HealthVault to make relevant medical records readily available 'In Case of Emergency (ICE).'"
• Kryptiq
• MEDSEEK (MedStar Health's Patient Portal platform)
• MedStar Health (a healthcare system in the Baltimore and Washington area) HealthVault appears to be focused more on connecting to devices rather than institutions or service providers.

McDonald says, "Everyone knows the current system--with fragmented care and silos of information--needs improving. Everyone also knows health providers, even with the push by the federal government to get doctors and hospitals to abandon their paper medical files in favor of electronic records-keeping systems, have been slow to make such changes. We need a catalyst to help make the transitions to consumer-centric care and electronic records, and Microsoft believes that with a system like HealthVault, we can transform the health system."

Google Health

Currently in the pilot stage, conducted with approximately 1,500 workers at the Cleveland Clinic, Google Health is a PHR, although Roni Zieger, MD, product manager of Google Health says, "It has a lot of PHR features, but it has some features that aren't typical for the traditional PHR. The basic idea of Google Health is a place where you, the user, can collect, store, and manage health information. I think that aspect of it is pretty much what other people think about when they think of personal health records, although people have different definitions. What's important about what we're doing is we're working very hard to help users access their records that already exist in different places, for example, the hospital or the pharmacy where they get their prescriptions filled. In addition, we give them the opportunity, if they wish, to share their records with loved ones or healthcare workers helping take care of them or services that they want to connect."

Zieger notes that Google Health came about when the company noted that Google already answered more health questions than any other source on the planet without intending to. "We realize that while we will continue to improve the quality of our search engine, we think this is something else we can help with. It's in line with our vision of organizing the world's information; we think we can help people access their own medical records, control them, or be able to refer to them, for instance when there's an emergency or when they're transferring from one doctor to another. We want users to be able to personalize information or other value-added services, which we think could be a useful step in putting users in control of their own health."

As mentioned earlier, Google Health's current revenue model is to have a search box linking Google Health to their regular Google search engine, which features targeted advertising. As of now, Google Health has no advertising within the product itself. Zieger says, "This is a consumer product, so we're building this explicitly for consumers. Users will eventually be able to share this information with anyone they want, including a physician. But we do not have an interface for a physician to directly send their information into it."

Of particular significance is a recent partnership between Google Health and laboratory diagnostic giant Quest Diagnostics. In the April 2008 issue of Washington GDŽ Reports' Diagnostic Testing & Technology Report, it was reported that, "Under the terms of its collaboration with Google Health, Quest is developing solutions that will provide patients, through their physicians, with easy and secure electronic access to their diagnostic test results. Quest's proprietary Care360 patient-centric physician portal will serve as the platform for securely transferring patient diagnostic laboratory data into a Google Health account, at the user's request."

As part of this arrangement, the article says, "According to Quest, in addition to providing diagnostic laboratory data, the collaboration will allow physicians to securely send historical laboratory data to the patients' Google Health account. Physicians will also be able to comment on their patients' test results to better inform them about their health status."

Zieger says, "We're talking to a variety of people about similar arrangements." Additional future partners are Aetna, Wal-Mart, the University of California at San Francisco, the American Medical Association, and Cedars-Sinai Medical Center. Zieger says, "The idea I most want to leave you with is Google is new to the space.

We're not a healthcare company and we don't aspire to be one. We're going to learn as we go and we're very open to input from you and your readers and others; our primary objective is to help put the user in control and to have value-added transaction choices. We want to be completely clear to the user and give users the opportunity to do things that may be useful to their healthcare. We look forward to learning from you and others who have more experience than we do in this space."

Patient Gateway
Partners Healthcare

Jonathan Wald, MD, MPH, Associate Director for Clinical Informatics Research and Development at Partners HealthCare, says, "Basically it offers a secure patient portal free to patients at Partners HealthCare. It gives patients three things: ; access to their medical chart information, medication, allergies, immunizations, appointments, lab results, everything coming out of their doctor's chart. The second is online communication tools, for example, web messaging that allows them to communicate online with their doctor's office. They can send in form requests to make an appointment, prescription or referral information, or put in a message into a text box, or freeform ask their question. Those requests are then routed to the appropriate staff within each practice."

The third component is allowing patients a way to look up information about medications, illnesses, lab results or general reference information through a license Patient Gateway has with HealthWise (www.healthwise.org).

Wald notes that in terms of laboratory information, lab data is not really filtered by the physician on Patient Gateway. "The data flow is that a physician orders a lab test, the test is resulted by the lab and communicated into an enterprise data store at Partners that stores lab results; in other words, CDR, which stands for clinical data repository. That is a database with a collection of lab results in it. That database serves those results up to the doctor who uses the electronic medical record. It also serves those results up to the patient that uses Patient Gateway, so we don't require the doctor to decide whether they're going to share or not share particular lab results with a patient. We made those rules at a Partners level. Partners decided there were 200 common lab tests they were going to share with patients, so patients have access to those whether the doctor looks at the results or not. It's not up to the doctor to act as gatekeeper to the patient's lab results." Wald notes that the project began around 2000 with the intention of discovering and understanding what the patients' experiences would be like if they were able to use the Internet to access their health information and communicate directly with the healthcare providers' offices. "We didn't assume that we knew the value, but we thought there might be potential. What we've learned are the reasons we're doing this project still today--we want to improve the patient experience, so we want to offer them convenient services. We wanted to create transparency with the patient around their medical data, because all too often patients don't have access to the findings of their lab tests or their radiology reports or their clinical charts. It's definitely a patient focus, but the second thing is we realized that this tool can actually service the doctor's office indirectly, because it creates efficiency for the doctor's office."

LifeOnKey Inc.

LifeOnKey originated in Israel, spread to Europe, and is now entering the U.S. market. Linda Harnevo, CEO of LifeOnKey, says, "The task of these companies is to build for every consumer a health awareness space where he or she can collect health information without having to put the information in themselves. We bring the technology, the platform, for how to integrate information from the health system and then of course, convert it and put it online for the benefit of the patient. It's not just that set of information, but a way to manage that information and the information with communications that bring the various parties together."

LifeOnKey reports approximately two million users worldwide and expects to hit five million by the end of 2008. They also boast multi-lingual functionality. Donna Halperin, LifeOnKey's Executive Vice President, says, "Part of what distinguishes our product and the benefit we bring is that we are interoperable. The consumer can choose a plan where they're imputing information as well as have their health records imputed. We are in conversation right now with various companies that would allow consumers to authorize their health record to be auto-populated."

LifeOnKey notes that due to the variations in the healthcare systems between Israel, Europe, and the U.S., the majority of the company's relationships have been generated by insurance companies, governments, and hospitals. Halperin says, "Combine that with a fairly impressive board of advisors, and we are situated in a very nice place, well-poised to enter the U.S. market."

Although they charge a nominal yearly fee--$50 per year for their basic service--Halperin indicates they are investigating ad revenue for their site. "We've actually done focus groups here in the U.S. and asked the participants how they felt about advertising and there were no concerns relative to that."

Harnevo says, "Nevertheless, with our system, it is up to the user whether they wish to see targeted advertising or not."

LifeOnKey also focuses on particular patient groups, what might be considered compartmented or specialized patient groups. They have compartments specialized for diabetes and a comprehensive girls/women's platform. Halperin says, "Whether it's fertility, pregnancy, birth control, any of these indications that vary specifically to a woman's life cycle, even adolescents are included. In other words, looking at the span of a woman's life cycle, girls to women, we've developed a network of applications that speaks to women in general."

One other important aspect of LifeOnKey is portability. Halperin says, "This is something that really has been developed so the consumer can literally carry it around on a bracelet or a keychain or a PDA. The portability is really very important and it goes to the whole sense of consumer-centric healthcare and empowering the consumer. That's how our entire interface has been developed."

MedCommons

MedCommons refers to their product as a HealthURL Appliance. Adrian Gropper, MD, Chief Science Officer for MedCommons says, "MedCommons is a means by which individuals can control their health records and share them with anybody and everybody. It's exactly the same idea as what Google and Microsoft are doing, at least at the 50,000-foot level. The difference is that our software is available for licensing. If someone has a brand name and wants to go into the health records management business with their brand, they can't do that with Microsoft or Google."

Gropper notes that the difference might simply come down to what the user can do with the technology. "Another way to think of it, whether it's a doctor, patient or anybody, is if they're using Microsoft, they're using the Microsoft privacy policy in terms of use, and if they're using Google, they're using the privacy policy in terms of use; if there is anything in that privacy policy that doesn't suit them--tough. So what can they do? They can license software from MedCommons in order to impose whatever policy they want."

MedCommons is careful not to define itself as a personal health record. Gropper leans toward the definition of a private health record. On the MedCommons Web site they indicate they are not a PHR. "As implemented by MedCommons, the Health URL is an authoritative, EHR-quality archive made accessible through Web interfaces. Because we handle diagnostic imaging, the MedCommons Health URL Appliance is FDA registered as a medical device. Both PHRs and EHRs can connect to a Health URL." Both the MedCommons Web site and Gropper indicate that the big difference is that physicians are reluctant to deal with PHRs because of the reliability of the information on a PHR. From the Web site; "Physicians are reluctant to use a health record that may have been modified by the patient. To reduce this objection, MedCommons uses the ASTM-standard Continuity of Care Record (CCR) as the native data model because of its ability to assign attribution and manage digital signatures for each and every component of the health record. Individual lab results, vaccinations, radiology reports, etc... retain their chain of custody even in cases where different practices and the patient himself are actively collaborating around a Health URL."

Gropper indicates that MedCommons currently is only generating income by dealing with resellers that are providing medical records services for hospitals. However, they have plans to allow people to buy these private health records, primarily through the online social networking site Facebook, although that plan has yet to be announced. "You would use them to participate in online forums with patients that have the same interests and also using your private health record to generate very private care teams. If you have three siblings that are taking care of two aging parents, you might--all five of you, or at least the three siblings--be interested in collaborating around what's going on, so you know what's going on medically. How would you set that up today? What would be the way the medications, radiology, and CT scans could be managed? One way would be for the three siblings to join Facebook, install this application and access it through MedCommons."

FollowMe and MiVia

FollowMe and MiVia are two separate entities, but they are run by the same company, Access Strategies. FollowMe was originally created by Cindy Solomon, whose son had hydrocephalus. Solomon would literally carry a box filled with her son's medical records from various specialists and after an emergency when she wasn't in the same location, decided to set up an Internet-based portal to contain medical records. Heidi Stovall, Vice President of FollowMe, says, "We called it an online medical record when we started. It's now called a web-based personal health record." FollowMe was launched in April 2000.

FollowMe has a subscription-based revenue model and charges $24.95 annually. Stovall also notes that they modify their platform to meet various consumer groups. "We have taken the platform and customized it for other entities. We have added a diabetes module and taken a new look and feel for the platform for a hospital district in southern California. We've done that several times. We have taken the platform and customized it for a group of mentally disabled adults who come from different providers in the community, but not all the providers are connected to each other. So we're starting to get more of that, where people see the value of the PHR and want to have their own label--basically re-labeling and customizing." Although largely based in California, FollowMe has clients in New York and Oregon and they are in discussions with companies in Florida and Texas.

MiVia is an example of customizing. MiVia was launched in 2003 to provide a personal health record for migrant and seasonal workers in Sonoma Valley, California, predominantly those working in the wine industry. Stovall says they had formed a nonprofit organization, Community Health Resource & Development, and MiVia was a collaborative effort of Vineyard Worker Services, St. Joseph Health System-Sonoma County, and the non-profit.

Stovall says, "What we found when we looked into the migrant farm worker population was that people would come into an area with an existing condition, they might be seen at the local community clinic or the local St. Joseph's Health Services health van, or they might go to an emergency room. Then they leave and go to the next community and all their health information stayed behind. We created a new product where the clinicians can log into the patient's account with the patient's permission and add in their own information, much like the EHR."

MiVia began with fifty participants and has grown to about 7,000 and has released a fourth version of the media. Stovall says, "All the changes and add-ons come from the user input. We have a very strong loyalty base with the physicians and users. Part of that has been a lot of surprise about this so-called 'marginalized' population that nobody expected to use, first, computers, and second, the Internet in the healthcare arena. Basically we disproved all that."

Both MiVia and FollowMe come with identification cards. Stovall notes that they have been careful to listen to their customers in terms of what the cards should look like and what type of information they should contain. "The MiVia clients wanted the card to look like an ID on the front. On the back it has all their emergency information. It includes a photo and on the back it has their contact people, their physicians, what conditions they have, medications, allergies, etc."

Stovall says that one of the concerns their MiVia clientele had was privacy, especially regarding government access of their records. "We have all the security the banking industry has in terms of encryption and we meet or exceed all the privacy and security concerns that all the other high-risk industries do. We also take a stand of consumer advocacy, so our mission is to protect the position of the consumer. We're not here to gather data and resell data, it's to make a difference and improve the system for the consumers. Our concern is if the health record industry is taken over and changed by industry members who have other uses for that information, it will change the consumer's perspective on what a health record is and they won't be as willing to use it. So what we're trying to do is protect the definition of what a personal health record is."

MyGroupHealth

Group Health Cooperative

Seattle, Washington

MyGroupHealth is a PHR available to members of the Group Health Cooperative in the state of Washington. Group Health Cooperative, founded in 1947, is a consumer-governed, nonprofit healthcare system based in Seattle. MyGroupHealth was started in 2001 and was designed to allow patients access to their medical records at the same time the physicians do. Ted Eytan, MD, MS, MPH, Medical Director, Health Informatics & Web Services for the Group Health Cooperative, says, "Most companies, when they bring up electronic health records, deploy to physicians first. Our approach was patients and physicians at the same time. So we made laboratory results available online, allergies, indications, and medical problems. It was a statewide project, we invested $42 million, and the goal was we wanted our patients to have the benefit of health information technology in real time. They didn't have to wait to come into the clinic."

Eytan does note, however, that it is only a subset of test results that appear in real-time. "The rest appear after a one-business-day delay. We don't publish things like radiology or pathology results. We publish the exact results from the actual lab and hyperlink it to the Healthwise Knowledgebase and encourage our patients to access that. We want our patients to understand their healthcare better."

Interoperability is a major issue, but Eytan notes that because Group Health Cooperative is essentially self-contained, it hasn't been as big an issue as it is for some PHRs. "Our patients are lucky in that when they're a part of us, we own our own laboratories, pharmacies, our own specialties and specialty centers. We've never had many interoperability issues because we're self-contained. But in 2008, some of our patients get care at the V.A., at our network, and at doctors or systems that have their own electronic health record, and we want them to flow with ours to get where they need to go."

MyGroupHealth has a contracted network with about 9,000 physicians throughout the state of Washington, who have a secure web-based access to MyGroupHealth. Eytan says, "In general, we want every patient in every care organization to have a great care experience, so an organization that challenges a health system to be more accountable is a good thing. We've always had great relationships with our personal care and specialty physicians and that's not going to change, but this project is an example of our willingness to innovate for our patients."

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