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Chris Longhurst, MD
Chief Medical Information Officer
"As we continue our journey to an electronic health record at Packard Children's, we are exploring a variety of ways in which technology can be used to empower families with their own healthcare data, and we are grateful to have partners from the Family-Centered Care Department to help with this process."
 | | Lucy Longhurst, one of the first patients to have a PHR |
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PHYSICIAN PERSPECTIVE ON PERSONAL HEALTH RECORDS |
 | | Arash Anoshiravani, MD, Adolescent Medicine, Physican Lead of PHR Team |
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"Patients and families want and need timely electronic access to the health information. We're excited to provide this, as well as to give physicians and caregivers a view into important patient experiences that impact health and quality of life.
For example, our transplant teams will be able to monitor patients' home blood pressures through the personal health record system from within the hospital's electronic medical record. We are the first Children's Hospital in the nation to have built in this sort of two-way access, and we look forward to seeing the positive impact it will have on our patients' lives." |
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PARENT PERSPECTIVE ON PERSONAL HEALTH RECORDS
|  | | The Smith Family receiving care at
Packard
"I was concerned about traveling with my daughter over the holidays, given her recent episodes in the ER. Having her records along and always available to me provided great comfort in the event we'd need them. I could share them electronically with doctors in another state, and would be sure I wasn't forgetting any part of her complicated medical history."
Sandra Smith |
| Quick Links |
Need parent feedback on a project? Attend a Family Advisory Council Meeting.
To provide feedback on this newsletter or suggestions for future issues,
View "Family to Family" Brochures |
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Want to learn more?
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FAMILY ACCESS TO INFORMATION |
Feb 2011 |
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Patient and family access to information is a cornerstone in the national strategy for addressing family satisfaction.
Parents of our patients report that the move from paper charts to electronic medical records has posed new opportunities and challenges when accessing their child's health information. In response, Packard is developing programs to meet this need. In this newsletter you will read about Packard Children's innovative approaches to this key practice of family-centered care.
Karen Wayman, PhD, Director of Family-Centered Care
Click here to learn more about Family-Centered Care
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PACKARD CHILDREN'S PREPARES TO PILOT PERSONAL HEALTH RECORDS
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 | | During the planning phase, parents met with the team to set-up, test, and provide feedback on their child's personal health record |
After years of careful evaluation, designing, programming, and testing, Lucile Packard Children's Hospital will soon be piloting personal health records (PHR) for patients and families. Using the Google Health website, families will ultimately be able to access private health records for their child, including medical history, most lab results, medications and dosages, allergies, and other pertinent health information. Packard will be the first children's hospital to partner with Google Health in offering PHRs. The committee to launch PHRs has been meeting weekly for several years, and has included a parent from the department of Family-Centered Care. More than 50 families have also been part of the early testing phase, giving feedback on how the records can be more useful and accessible.
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WOULD YOU LIKE A PACKARD PERSONAL HEALTH RECORD FOR YOUR CHILD? |
 Before launching PHRs to Packard Children's patients and families, we are making them available to our Packard hospital employees who have a child currently under 10 or over 18 years old who has been cared for at Packard Children's. This temporary restriction was designed to meet privacy issues inherent in the care of adolescents. If you would like to set up a PHR for your child during this pilot phase, please click here to get started. |
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Benefits of Personal Health Records
to Patients and Families
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The PHR allows families to:
- Actively partner with their doctor in managing their child's care
- View most lab results in as little as 3 days
- Print health records to have at all times
- Participate in tracking medications, dosages, and allergies, thereby improving safety
- Access health history and conditions by date and severity
- Easily share information with other providers worldwide. If one needs a doctor while traveling, all health information is easily accessible
- Allow Packard doctors to view results from other providers
- Feel secure knowing that all information on the PHR is confidential, and may ONLY be shared by the family
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Daily Health Updates Now Available for Families in the Packard Intensive Care Nursery (PICN)
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In 2009, Dr. Chris Longhurst, MD, and members of the Packard Neonatal Intensive Care Unit (NICU) leadership team, inspired by their attendance at the Vermont Oxford Network quality improvement collaborative, discussed the idea of using LINKS to give families daily updates about the progress of their babies.
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Ron Cohen, MD and Director, PICN
"The update is great. It is the future. More interactive data-sharing with families will be part of health care in the future with home health records and electronic charting. It is great to be ahead of the curve and leading the country on this for hospitalized neonates. No doubt there is much learning and work needed to be done on this, but so far the families love it. In time, I think physicians will see this as a great way to improve communications with families, resulting in better-prepared parents and higher parent satisfaction."
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The result is a printout that gives parents information about their baby's condition and care in the previous 24 hours, including respiratory status, nutritional status, recent lab results, and current medications. "Your Baby's Daily Update" is automatically printed each morning for every baby in the unit, and is then reviewed and distributed to parents by their doctor or nurse practitioner.
The pilot was launched in October 2010, and parent feedback so far has been very positive. Families appreciate receiving the information each day, and are happy to have this connection to their doctors and nurse practitioners. Nurses find the easy-to-use form beneficial as they share information that most interests parents. Once rolled out successfully in the PICN, the goal is to make daily reports available to families in other units.
An interdisciplinary team made up of nurses, doctors, parents, and informatics staff came up with a plan to pilot this project in Packard's Intensive Care Nursery. This project has been implementation under the direction of Ron Cohen, MD, PICN Director; Sheryl Goldstein, RN, PICN Assistant Nurse Manager; Margie Godin, RN, Informatics Manager; and Heather Keller, FCC Lead Parent.
 | | A sample of "Your Baby's Daily Update" |
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DID YOU KNOW...
| Facts about the Family-Centered Care Department at Packard Children's
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25 parents work in the FCC Dept at Packard Children's
18 trained parents meet monthly at a Family Advisory Council Meeting FCC parents represent experience with over 20 service areas at Packard
Parents sit on more than 17 hospital committees 12 parents mentor families each week
96 "Parent Hours" to help in-patient families are held annually
The department has produced 18 brochures in English and Spanish to help parents navigate their child's care The FCC Dept has held 7 international forums to train hospitals on best practices in Family-Centered Care
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