Data Sharing That Benefits Customers

You rarely get a full-circle view of your health records because doctors, hospitals, specialists, pharmacists and insurers track transactions with a combination of software plus paper, and few of those systems talk to each other. It’s like having your bank provide separate statements for deposits, withdrawals, transfers and fees, leaving it to you to integrate the data each month. Worse, actually, because most healthcare organizations don’t regularly supply customers with much data at all.

Not so Children’s Hospital Boston, which created MyChildrens.org, a Web portal where pediatric patients and their families can annotate personal health and treatment records, view billing information, as well as share information among healthcare providers and insurers.

To read more on this topic, see: Microsoft Buys Software for Amalga E-Health Platform and Booster Shot for E-Health.

Children’s didn’t create the portal just to be benevolent, says CIO Daniel Nigrin. The potential for better outcomes, improved customer satisfaction and competitive advantage convinced the hospital to push ahead. Still, changing patient and provider views about how much openness is too much continues to challenge the hospital. Patients hesitate to have their information put online unless they’re confident it will be well protected. Providers are reluctant to manage yet another communications channel—e-mail with patients.

As in any major business project, changing end user attitudes is more important and usually more difficult than changing technology, says Edmund Billings, a physician and chief medical officer at Medsphere, a consultancy that also offers open-source electronic medical records software. Employees and customers must be educated about privacy and security measures and the appropriate use of the technology with sensitive data, Billings warns.

Better Patient Relationships

MyChildrens.org gives secure access to lab results, background data and insurance and billing history, all of which are refreshed nightly. Patients can also exchange e-mail with their physicians.

“In almost every other aspect of your life, you have pretty good knowledge of what’s happening,” Nigrin says. “You go to the doctor and he might tell you what he thinks but you don’t know in detail about test results and the care plan and the final written opinion.” Opening up such information will get people to be more proactive about their health, he predicts. Health care will become more interactive.

The portal—akin to Microsoft’s HealthVault and Google Health in that it allows patients to manage their health data—was built by Children’s based on open-source software. About 1,100 patients have signed up since the April launch, Nigrin says. Although some doctors feared getting inundated with e-mail, that hasn’t happened. Nigrin’s ideas about informed interactivity, however, are panning out. Doctors report that patients are asking more questions during in-person visits, which makes treatment more of a collaboration. “That’s satisfying for both sides.”

Part of what makes the portal successful, Nigrin says, is that it builds on an existing trusted relationship between Children’s doctors and patients. For example, the hospital, not an outside vendor, manages and protects all the data. Doctors, not administrators or IT people, introduce the portal to patients.

Right now, the portal technology is novel, like ATMs were in the 1980s. And like ATMs, health portals will become a must-have feature, Nigrin contends. “The organization without one will be viewed as not with the program. ”

Contact Senior Editor Kim S. Nash at knash@cio.com.

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