Portland-Based Organization Leads the Way in Health IT

by Linda Barney, founder and owner, Barney & Associates

One of the goals for health information technology (health IT) is to make health records available to the individual. The U.S. Department of Health and Human Services has this goal, “Health information technologies can be tools that help individuals maintain their health through better management of their health information. Health IT will help consumers gather all of their health information in one place so they can thoroughly understand it and share it securely with their health care providers so they get the care that best fits their individual needs. Health IT can help to improve public health one individual at a time by building partnerships between health care consumers and providers across the country."

Survey of interest in online personal health records
In November 2006, Lake Research Partners and American Viewpoint conducted a national survey of roughly 1,000 Americans 18 years or older. Those surveyed were given a brief description of secure online health information networks and asked how interested they would be in accessing their own personal health records information if such a network existed. Two-thirds say they would be very or somewhat interested in such a system. Respondents most interested in having access to their personal health records were under age 40 (72 percent), daily Internet users (71 percent) and parents (70 percent).

The survey found, “When given the scenario of changing doctors or moving to a different city, an even greater majority—84 percent—said it would be important for them to have electronic copies of their medical records that they keep and control.” While this survey and others conducted over the past five years have found that Americans are interested in an online personal health record system, they also have major concerns about the privacy and security of such a system and would support it only if strong security and confidentiality safeguards were part of the system.

Changing the model of health records
In the current model, the providers of healthcare create and maintain health records. Records are required for medical-legal documentation and are an important vehicle for communication regarding a person’s care. Individuals can request a copy of their records, for a fee, from the various healthcare entities that hold them such as clinics, health systems and health plans. This health information may be shared among these entities without the patient’s consent for three exceptions under the HIPAA Privacy Rule: payment, treatment and operations. As such, people have little control over where the information is passed and no easy way to monitor the flow of their health information within the healthcare environment and to the business associates of these entities. This remains largely invisible to the patient at the present time.

A new model is emerging that puts patients in the center with regard to their health records. According to Dr. Jody Pettit, health information technology coordinator in the Office for Oregon Health Policy and Research, State of Oregon “There is a new paradigm for personal health record systems and I believe that we can implement this new model in a way that is good for the patient and enables the healthcare system to deliver great care.”

In the model described by Pettit, the patient’s medical records would remain with the clinician or hospital, but the patient would have a convenient electronic copy of those records. The personal health record would include both clinical information and patient-entered information. A key principle is that data integrity should be maintained such that information is appropriately attributed to the origin. Clinical information could not be overwritten on the record, but patients could enter comments into the records and whether and with whom they want to share those records.

When designing an online personal health record system, it is critical that software developers put the patient at the center and make privacy a top-line design consideration. There is a vital balance to be achieved between portability and privacy, and health record banks may be the path to both.

Omnimedix- Leading the way in health IT
The Omnimedix Institute (whose name means “medical care in every direction”) is a non-profit 5013C charity located in Portland, Oregon. According to J.D. Kleinke, chairman and CEO at Omnimedix Institute, “Healthcare politics is at the root of many healthcare issues not getting fixed. Being a non-profit entity enables us to work on the hard healthcare issues with a wide range of partners in healthcare, government, business and other non-profit agencies. Omnimedix Institute is dedicated to improving the quality, efficiency and equity of healthcare in the U.S. by fostering the proliferation and use of patient-centric health information technologies.”

Omnimedix develops the Dossia network
To address the needs of supplying access to personal health records, Applied Materials, BP America, Inc., Intel Corporation, Pitney Bowes, Inc., and Wal-Mart funded the Omnimedix Institute to develop Dossia, a Web-based framework through which U.S. employees, dependents and retirees of these companies can maintain lifelong personal health records.

“Dossia will empower individuals to manage their own healthcare, improve communications with their doctors, and ensure more complete and accurate information for healthcare providers than the current fragmented, paper-based system,” Kleinke says. “With Dossia’s personal, private and portable personal health records, individuals will be able to maintain comprehensive, up-to-date histories for themselves and their families.”

Information stored on Dossia will be secure and private, and available only to the individual or others to whom he or she grants access. Dossia records also will be portable, so that individuals can continue using the records even if they change employers, health plans or doctors.

Dossia network architecture
The Dossia architecture is based on Connecting for Health’s Common Framework, a set of design and policy standards established by a collaboration of all stakeholders in the industry—including consumer-advocacy organizations, physician groups, insurers, technologists and privacy watchdogs. Connecting for Health is funded by the Markle Foundation and the Robert Wood Johnson Foundation.

As John Hall, chief technology officer at Omnimedix, says, “The idea behind Dossia is to give patients access to the pieces of their medical record that currently exist in isolated silos such as pharmacies, claims, lab data (national labs, regional labs), surgical or medical claims clearing houses, physician offices and hospitals. Our goal is to work with these different partners to tie into their systems so that we can provide access to the aggregated, longitudinal health history via a common application. In developing the framework of the Dossia network, Omnimedix has resolved the issues of data transfer between systems by being able to use a variety of messaging protocols, understand different formats in the various vendor systems and also address the issues of security, privacy and authentication of users.”

Hall says that Dossia was developed as a services-oriented architecture using mature open-source models. Omnimedix uses a software-lifecycle process based around Agile development methodology using a mature variant of Extreme Programming. “We believe in transparency in communication, and the entire office encourages an open exchange of ideas to provide real-time collaboration in system development and testing,” Hall adds.

According to Kleinke, “Omnimedix Institute is the architect of the Dossia database and the group that built the database. Omnimedix is responsible for making sure that the infrastructure has been built in a sound way.”

Angeldocs and other Omnimedix projects
As part of its mission to address healthcare needs, Omnimedix is designing Angeldocs, a Web-based matching application that will allow community health centers, social workers and emergency-room staff to match uninsured patients with private-practice physicians willing and able to provide pro bono medical services. As Kleinke explains, “The goal of Angeldocs is to enable the delivery of charity medical care to uninsured patients via physicians wishing to provide such care, anonymously and with documentation for tax credit purposes.”

Omnimedix is further engaged in ongoing research into how specific health information technologies can be used to catalyze change within the U.S. healthcare system, and to develop health information technologies that address specific health-care problems.

About the author
Linda Barney is the founder and owner of Barney and Associates, a technical and marketing writing firm. Founded in 1990, Barney and Associates specializes in technical writing, documentation, online help, Web content and training. Barney and Associates also provides a wide range of marketing writing services including creating media articles, white papers, data sheets, solution briefs, case studies and reviewer’s guides. Contact Linda Barney at linda@barneyassoc.com.

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