Exploring the World of Online Personal Health Records

You might have noticed how hard it is to obtain your own health care history.  Most medical records are written on paper. This is changing, but slowly.  Even forward-looking doctors, hospitals, and pharmacies who are converting to electronic records have a hard time integrating with each other, since each IT system is largely independent of other systems.  What you, the patient, would like to see is all of your history together in one place, regardless of who the provider was or where the care was given.

One of the tools that show promise in moving us towards that goal is the PHR, or Personal Health Record.  While the concept of PHR has been around a long time, a relatively new idea, the online PHR, gained a big boost in popularity when Google and Microsoft each announced plans to provide PHR applications, aka Patient Portals, in 2007.

In a series of articles, we will explore online Personal Health Records and see how they might benefit both you and your care providers.  We’ll take a look at how the two major business players architected their PHR applications, and finally dive deeper into how each of these solutions can be integrated into an existing health care IT enterprise.

What is PHR?

Personal Health Records contain information about a single person’s health care history. The information stored typically includes at least the following:

• basic demographics like name and date of birth
• visits to doctors or other professionals and hospitals
• diagnosed diseases, allergies, or other conditions
• treatments applied
• medicines prescribed and taken
• vaccinations administered

The term PHR is used for patient-centric health records, often created and administered by the patient, and stored in human-readable format, as opposed to the more generic term Electronic Medical Record (EMR), which refers to provider-centric data, often stored in a proprietary format, and used for data interchange within an organization or among healthcare providers.

Patient-centric information is traditionally stored only on paper, but in recent years some larger health care providers have begun offering PHR to their members online.  While this is a big step forward for those patients lucky enough to have it, this would still not represent a complete history, since only data from visits within that provider’s system(s) would be available.

Enter online PHR

From the patient’s perspective, what is really desired is a permanent repository of patient-centric data throughout the patient’s lifetime.  I might also like to exercise control over who sees what in my personal health data. Finally, search capability would be a big plus to both patient and doctor when dealing with large amounts of data.

There are many companies offering online PHR products today, including well-known names like WebMD.com and lesser-known companies like NoMoreClipboard.com, and of course industry heavyweights Google and Microsoft, offering Google Health and HealthVault, respectively. You can view a list of competing vendors at PHR Reviews. Later articles in this series will provide more detail about vendor-specific product offerings.

Online PHR data could theoretically be stored in any format, but in practice, since it is meant to be interoperable with other such records, a standard format is required. The format adopted by Google and Microsoft is the Continuity of Care Record (CCR), which is a standardized XML schema officially documented by ASTM International. The CCR format can represent any amount of data, from a single filled prescription, for example, up to the lifetime history of the individual, including family history.

Why would I want an online PHR?

There are many reasons.  One of the best has already been stated: because your medical team can do a better job of caring for you if they have access to a complete and long-term medical history for you, and not just that paper form you filled out in the waiting room.  You might want to control who can see your medical records. And you might want the convenience of browser-based access to your data from wherever you are, without the need for proprietary client software.

Your health history is spread out across numerous non-compatible computer systems in various parts of the world. We Americans tend to move a lot.  Would you believe once every five years on average?  How many of us actually go to the trouble of requesting a copy of our medical records when moving from one city to another? An online PHR would make it much easier to provide my past medical history to my current doctors.

Even within the same health care IT system, your data may not be aggregated.  It is to your advantage to aggregate your data even if some effort is required to do so. Here is a list of the most compelling benefits to electronic PHR aggregation.

1. Organize your data all in one place
2. Import data from many providers, doctors, hospitals, and pharmacies, past and present
3. Control who sees your data and participate in your own care

Why would my doctor want this?

Most health care providers only have access to the portion of your medical history stored at their own facility, often in paper form, and usually highly visit-specific (”patient complains of heartburn after eating chili dog”). Having access to long-term history including vaccinations and allergies would be a boon to any medical professional.

For the doctor’s medical IT system, i.e. the corporate umbrella which maintains patient data and performs aggregation services, the benefit is not so obvious.  As the user base grows, there should eventually be a point of critical mass at which internal efficiencies outweigh the initial costs. There is also an intangible marketing benefit from having a presence on Patient Portal websites. At present, the list of participating health care providers is small.  It is not clear at this point if patient demand for this service will push IT organizations to invest in the required infrastructure.

How does it work?

The workflow of specific PHR applications will be covered in later articles, but the basic flow is as follows:

1. User creates a PHR and stores it online
2. User imports data from a health care provider
3. Authorization handshake occurs between provider and PHR Application
4. Health care provider updates user’s PHR

Isn’t this a privacy risk?

Privacy of personal health information (PHI) is a very real concern that should be taken seriously. Just as you trust your financial privacy to your bank if you use online banking, using an online PHR application will require a level of trust in whatever PHR vendor you choose. I urge you to read the vendor’s privacy policy. Only you can decide if the privacy policy, together with the reputation of the vendor and the desired convenience of online access, justifies the risk that your privacy might be compromised. Privacy concerns are one reason why user adoption is slow so far.

Security and privacy concerns will be addressed in more detail in the vendor-specific articles.

The article series

In this series of articles we’ll take a look at two business leaders in this space and dive in to find out how their products work and how health care IT organizations would integrate them into their enterprises.  In each case we’ll devote at least one follow-on article to a specific implementation.

1. This introduction to PHR
2. Google Health – what it offers, how it works, approaches to integration
3. Google Health in an SOA as orchestrated with WebSphere Process Server
4. Microsoft HealthVault – what it offers, how it works, approaches to integration
5. Microsoft HealthVault in an SOA as orchestrated with Microsoft BizTalk

References

1. http://www.cdc.gov/nchs/data/hestat/emr_ehr/emr_ehr_figure.png
2. http://www.nytimes.com/2009/03/26/business/26health.html
3. http://www.nytimes.com/2007/08/14/technology/14healthnet.html?ex=1344744000&en=3117f81f6565f45b&ei=5090&partner=rssuserland&emc=rss
4. http://en.wikipedia.org/wiki/Patient_portal
5. http://open.krishworld.com/krishnan/open-standards/online-personal-health-records-my-thoughts/
6. http://health.google.com
7. http://healthvault.com
8. http://www.phrreviews.com/
9. http://en.wikipedia.org/wiki/Continuity_of_Care_Record
10. http://www.astm.org/Standards/E2369.htm
11. http://wiki.answers.com/Q/How_often_do_people_move_in_the_US
12. http://www.informatics-review.com/wiki/index.php/Benefits_of_Tethered_PHR
13. http://www.patientprivacyrights.org/site/PageServer?pagename=PHR_Report_Card
14. http://www.ama-assn.org/amednews/2007/10/22/bisd1022.htm