'Reading room adds to healing' tells Star readers that cutting library supports would be bad practise

Valerie McDonald takes her dismay and shock to readers of the Toronto Star:

I was dismayed to read about cuts to professional library staff at Sick Kids. The Toronto Public Library board has chosen to deal with funding shortfalls by ending its long-standing partnership with the hospital, and hospital spokespersons seem to think that volunteers will do the job of professional librarians. The children who use the Reading Room are among the sickest and most vulnerable in Canada. The Reading Room staff create normal and enriching experiences that add tremendously to their healing in a way that is difficult to quantify. It shocks me that neither the hospital nor the library is trying harder to preserve this service.

Valerie's Toronto Star letter follows a letter to Toronto Public Library which struck a chord and the TPL response.

Patient heath portals at Children's Hospital Boston and Cincinnati Childrens

The patient portals at Children's Hospital Boston is called MyChildren's (take a tour) as discussed in Information Week summarizes the expanding patient portal as of September 2009:

Data is currently fed to patients' health records from Children Hospital's internal Cerner electronic medical record system. With the new system, data will also be added to patients' records from eClinicalWorks EMR systems, which is the EMR platform used by the hundreds of Boston-area pediatricians and pediatric specialty-care doctors, who treat Children's Hospital patients on an out-patient basis.

Patients' personally controlled health records are accessible through Children's secure, Web-based MyChildren's patient portal. Individuals can grant permission to institutions, clinicians, researchers, and other users of medical information to access this data.

By combining patient data from the Cerner EMR system that the hospital uses internally with data from the EMR systems used by ambulatory-care clinicians, patients and their healthcare providers will have access to more comprehensive and complete clinical information about the patient, said Children's CIO Dr. Dan Nigrin.

"Data will be automatically fed from the Children's Cerner EMR into the patient's personally controlled health record, and data from the EMRs of our physician organization will also be automatically fed to the patient records," he says. The data won't be "pulled," but rather it will be automatically fed and then stored in Indivo, which is Children's Hospital's open source, internally developed architecture for integrating data from multiple sources.

Indivo is also the technology behind the personal health record system being deployed by Dossia consortium's members to their employees. Dossia is a group of employers, including Wal-Mart and Intel, who are funding Web-based personalized health records for workers.

"We're pushing new boundaries," said Nigrin about the "raw data," such as lab results, that will be fed into the personally controlled health records from the multiple EMR sources and points of care. "This is a brave new world," Nigrin adds.

MyChildren's also allows bill payment

Cincinnati Children's My Care Connection states its objective in the phrase anchored at the top left of the portal landing page: Growing Through Knowing. The full name is the My Care Connection Chronic Condition Clinical Portals at Cincinnati Children's Hospital Medical Center and "The portals are designed to improve the quality of patient care":

Portals support the ability for patients and parents to manage a child's condition and provide information parents need in order to be active, informed members of the health care team. My Care Connection also provides a secure way for patients and family members to ask non-urgent questions. Questions are answered by doctors, nurses or other care team members within one business day. Both questions and answers can only be viewed on My Care Connection.

The Cystic Fibrosis My Care Connection describes the purpose of the portal similarly, adding

The purpose of My Care Connection is to improve the quality of patient care. It includes accurate, up-to-date medical record information. The portal supports your ability to manage your child's condition. It provides information you need to be an active, informed member of our health care team.

The list of portal includes: "Lab results (Results can be viewed in text and in a graph); Height and weight data (with a graph); Lung function data (with a graph); Recent clinic visit dates; An area where you can ask non-urgent questions to specific members of the Cystic Fibrosis Care team. Your question will be answered by a caregiver within three business days." For urgent questions, readers are provided phone numbers to call.

My Care Connection is not intended to replace the personal relationships you have with your caregivers. It is intended to provide an additional resource to share information. You are still encouraged to communicate directly with your caregivers.

A Tour introduction lists the goals of the portal as

• To have patients and families become more involved in their treatment

• To give patient and families the information they need to be active, informed members of their health care team

• To make getting health information more convenient

You can view screen shots of the tabs in the My Care Connection portal which include

The tour also includes screenshots of all the features which are accessed by a tab navigation: first a clinic-specific tab with log of visits and information on labs specific to the decease and then Labs either by all labs, labs outside the normal range or most recent labs and option to download data to Excel; Test Results which shows a date and report name and lets you view the report; Medications and details for each medication such as name, dose, form, frequency, route and special instructions and clicking a column name sort the medications for example alphabetically; Email a Question has an archive of prior emails and a form with fields to select the clinic to whom addressed, add a subject line, enter the question and browse to attach up to 3 documents (pictures, school letters etc) to be sent with the question; Documents is a repository of all documents uploaded including those attached to email questions; Visits has tabs to see emergency, inpatient, and outpatient visits; and Patient Info apparently limited to demographic data (name, age, date of birth, address, and phone numbers).

While looking for clear descriptions of the features of Children's portal I came across a research paper titled Interactive Storytelling Environments: Coping with Cardiac Illness at Boston's Children's Hospital (1998) that shows innovative patient engagement some time ago, in the dog year cycles of technology.

This paper describes exploration of uses of a computational storytelling environment on the Cardiology Unit of the Children's Hospital in Boston during the summer of 1997. Young cardiac patients ranging from age 7 to 16 used the SAGE environment to tell personal stories and create interactive characters, as a way of coping with cardiac illness, hospitalizations, and invasive medical procedures. This pilot study is part of a larger collaborative effort between Children's Hospital and MERL - A Mitsubishi Electric Research Laboratory to develop a web-based application, the Experience Journal, to assist patients and their families in dealing with serious medical illness. The focus of the paper is on young patients' uses of SAGE, on SAGE's affordances in the context of the hospital, and on design recommendations for the development of future computational play kits.

Thoughtful House in Texas patient portal in Texas treats autism and includes a patient portal

Patient Portal and PHR Information

Developing Patient- and Family-Centered Peer Support Programs webinar

SickKids will host a webinar presented by the Institute for Family-Centered Care on Thursday March 18, 2010 from 1-2.30 EST.

This promises to be a best practises review of hospital support for well oriented and prepared parents to 'buddy' with other families in care.

Here is the webinar blurb - "Peer support has proven to be an effective means of helping patients, parents, and families cope with challenging situations and in becoming their own best advocates. Learn how to design a successful Peer Support Program with those you serve."

If you are interested in attending, please contact Janine Good by email at janine.good AT sickkids.ca to confirm attendance and the room number.