Technology To Engage Patients in their Health Care

Daniel Nigrin, a practicing physician and Chief Information Officer at Children's Hospital Boston, explains how evolving technology can help patients (like himself) manage all of their health information and share it easily with disparate providers:

Personally controlled health record (PCHR) technology – an emerging patient-centric model of health information exchange – promises to transform health care for patients and physicians. With this model, patients are provided access and control over their health data via the Web and have the ability to manage and share their information easily and securely with providers as they deem appropriate.

Traditionally, information fed into an individual’s PCHR has come from a single health care provider organization or electronic medical record (EMR) system, limiting data to that of a single site of care. A new collaboration between Children’s Hospital Boston, its affiliated pediatric practice network and a leading electronic medical record system provider aims to advance the amount of clinical information flowing into a PCHR; providing patients – and their providers – a more comprehensive view of their health information.

Let me give a personal example of why this collaboration, and the approach it’s taking, is important. I have type 1 diabetes, and I sometimes get my routine lab work (hemoglobin A1c levels for example) done via my primary care provider, and sometimes by my endocrinologist. They each work at different institutions. If I had the ability to integrate the lab information from both of these providers in one place, I would more easily be able to view my hemoglobin A1c trends in one place, facilitating the control of my diabetes.

This is the level of integration Children’s is pursuing with this collaboration, where patients will be able to get data from both their primary pediatrician and their pediatric subspecialists in one central location online.

Furthermore, there is benefit here for clinical care providers as well. Using my example above, having my endocrinologist able to view hemoglobin A1c values that my internist obtained (or vice versa) would benefit his ability to care for me using all the data available.

This initiative exemplifies the goal of PCHRs, and true “data liquidity.”

Do patients want this? Research published earlier this year suggests a high level of interest by consumers once they have exposure to a PCHR.

Admittedly, it’s early for the technology yet, but it’s gaining momentum and it’s evolving, promising to engage patients, improve overall wellness, and even potentially reduce the cost of health care.

At Children’s, we have invested in PCHR technology and the idea of putting patients in control of their health information. Researchers in our Informatics Program developed a PCHR called Indivo, which we started offering to ambulatory clinic patients this spring. The PCHR can be accessed through our patient portal, MyChildren’s, and when patients log in, they can view a digital copy of portions of their health information, which is pulled from their hospital electronic medical record. Data may include measurements, immunizations, allergies, procedures, and labs, with more coming soon.

We are very excited about our new partnership as it will create the first instance where two separate health care provider organizations, with different EMR systems, will send information to a single PCHR.

This is exciting for our patients, because provider EMRs contain perhaps the richest and most valuable source of health information about them.

I wear many hats; among them chief information officer at Children’s, practicing physician, and father of three. I interact with PCHR technology in each of my roles – leading the implementation at Children’s, offering it to my patients, and accessing my kids’ medical records through MyChildren’s. From each point-of-view, this patient-centric model of health information exchange has a lot going for it and is a model we should continue to invest in.

This program aired on September 30, 2009. The audio for this program is not available.

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Rachel Zimmerman Reporter
Rachel Zimmerman previously reported on health and the intersection of health and business for WBUR. She is working on a memoir about rebuilding her family after her husband’s suicide. 



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