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What are the unique considerations for PHRs for children and families?

In the 2009 Policy Statement entitled Using Personal Health Records to Improve the Quality of Health Care for Children , the American Academy of Pediatrics (AAP) establishes basic principles for the ideal pediatric PHR.  These ideal qualities are similar to those from Connecting for Health, but are specifically geared towards pediatric patients.  Listed below are the AAP’s basic principles for ideal content in pediatric PHRs.

Content - The following should be contained in PHRs for children:

• demographic data;
• insurance information;
• information on family members and other support providers;
• summary and linkage to key documents, such as an individualized education plan (IEP);
• information on health care professionals and encounter lists, including dental and oral health professionals;
• problem list, including active conditions and illnesses, chronic health problems (such as mental health issues),emergency care procedures (equipment if needed) and contacts, hospitalizations, surgeries/procedures (and current technology support needs [ventilator, monitor, surgical site care, etc]), and privacy issues from individual problems;
• allergy, adverse-reaction, and other alert data;
• list of medications and immunizations and date of last reconciliation;
• anthropometric data including weight, stature, BMI, and head circumference and developmental milestones;
• results of laboratory, imaging, and other studies including screening results, as well as links to resources that can help explain the results and the implications upon care giving;
• family health history;
  birth history; and,
• information on durable medical equipment and supplies.

In addition to these content requirements, the 2009 supplement article on PHRs in Pediatrics asserts that pediatric PHRs should also include many of the same functionalities necessary in pediatric electronic health records (EHRs). These functions would include mechanisms such as growth tracking and immunization management.  

PHRs can also play an important role in preventive health for children.  The Commonwealth Fund noted that well-child care –“the primary means of providing developmental and preventive services” – should include PHRs for patients and families that are integrated with the patients’ EHRs.  The PHR can also serve as a tool for prevention, focusing on issues such as obesity, injury, substance abuse, and emotional health.  For example, the PHR can address obesity prevention by incorporating information such as meal logs, daily physical activity, calorie counts, and weight management tools.

Like the PHR guidelines from Connecting for Health, the AAP also states that the capability for data exchange is another basic principle of the ideal pediatric PHR.  A PHR for children and adolescents should be able to not only record data from patient encounters, but also to exchange interoperable data among providers and patients and families and between electronic health records (EHRs) and other health information systems.  Furthermore, this interoperability of data can encourage and facilitate greater continuity and coordination of care, allowing multiple providers, school-based health centers, patients and families, public health agencies, and other important health entities to interact.  The “blue button" concept represents one way of facilitating this sharing of data.  A term devised by members of Connecting for Health, the blue button would provide for quick and easy access to personal health information.  The idea behind this concept is that providers would be able to enter health information electronically, and patients and families or caregivers would be able to access this information through a Web-based patient portal.

In addition to exchanging data through the PHR, parental or guardian access to information is another necessary component of pediatric and child-friendly PHRs.  The parent or guardian would have the responsibility of managing the child’s information, enabling the parent to be well-informed and active participant in the child’s health care.  More specifically, decision support components of a PHR can provide a non-clinician parent or guardian with easy to understand information and directives.  In this way, the PHR can facilitate care giving by guiding parents and guardians though the process of addressing the child’s health needs.  For children not yet in adolescence, a parent or guardian will most likely be in control of the child’s health care.  This creates significant considerations regarding privacy and security concerns with PHRs for children and families, particularly those related to control and access of the PHR during adolescence.  

Related Resources:

Core features of a parent-controlled pediatric medical home record - RemedyMD, Inc., PubMed
Linking Children's Health Information Systems: Clinical Care, Public Health, Emergency Medical Systems, and Schools - Pediatrics
Pediatric Personal Health Records: Current Trends and Key Challenges - Pediatrics
"Blue button" technology pushed to give patients instant access to medical records - American Medical News