Empowering patients with access, control of their health information

By Daniel Nigrin, MD, MPH, senior VP for Information Services and Chief Information Officer

Earlier this spring Children’s Hospital Boston launched its patient portal, MyChildrens.org, as a secure Web site that lets patients and families manage their appointments, send messages to their Children’s clinicians, view and pay their bills online, update their demographics and view their personally controlled health record (PCHR). The PCHR piece of the portal was developed by researchers here at the hospital and lets patients own a digital copy of their medical record – really putting them in the driver’s seat with access to their information, and even allowing them to share that information with physicians, family members or others as they wish.

We have received tremendous feedback in response to the portal, from families eager to have a way to view their child’s health information in one place – immunizations, medications, allergies, labs, etc. – and the ability to share that information with their pediatrician, school nurse or other specialists their child sees.

Right now the information presented to families comes from the electronic medical record (EMR) system used at Children’s. We’re excited to announce a collaboration today that will feed even more information into a Children’s patient’s PCHR – information contained in separate records systems used by primary care practices in our pediatric practice network, called the Pediatric Physicians’ Organization at Children’s (PPOC).

The vision is that soon, patients will be able to have their health data from both their pediatrician and their subspecialist at Children’s collected in one place via the MyChildren’s portal.

Let me give you a personal example of why this 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. That’s the level of integration that we’ve announced today with our collaboration with eClinicalWorks – patients will now be able to get data from both their primary pediatrician and their pediatric subspecialists in one place.

Furthermore, there’s 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.  We’ve included the ability for providers at both Children’s as well as at the PPOC practices to view data in a patient’s PCHR (with their permission) as part of their regular workflow.

This model of patient-controlled health information promises to transform health care – from both the patient’s and the clinician’s perspective. If patients can maintain and share their health records with providers, providers can then have access to a patient’s complete health history and tailor care and treatments as needed. This will ensure the right data is in the right place at the right time – something that is oftentimes absent in today’s health care environment.