Pediatric Personal Health Records: Current Trends and Key Challenges

Abstract

Personal health records may enhance pediatric care and outcomes. Few systems have been developed or customized for pediatrics, and evaluations are scarce. Special considerations in pediatrics include pediatric content such as growth charts, complex privacy and confidentiality considerations, and the changing developmental needs of children and adolescents. Pediatrics 2009;123:S97-S99 P EDIATRICIANS HAVE LONG used tools such as immunization cards and well-child booklets to provide families with access to key information about their children's health. In the past 15 years, electronic records and the Internet have become increasingly important and available mechanisms through which to provide families with data about their children's health and to assist families in tracking their children's health and development. Families also create their own paper and electronic records of their children's health and health care needs. Electronic systems, known as personal health records (PHRs), may play key roles in enhancing partnerships between families and health care providers, promoting self-care, and enhancing family decision-making regarding the health of children and adolescents. Furthermore, they can provide key health information when a child becomes ill away from home or in a disaster. This article reviews PHR types and characteristics, summarizes some existing systems, and describes special challenges for PHRs in pediatrics.PHRs have been defined by the Markle Foundation as an "electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment." 1 An ideal PHR would be lifelong and would integrate information from many sources, such as health care systems, pharmacies, and insurers, as well as family-entered information such as symptoms, health concerns, and self-monitoring findings. It would be controlled by the patient or family, and it would be private and secure. It would facilitate communication between families and providers, using functions such as secure e-mail. 1 No existing systems meet all of these criteria, partly because of the difficulty of merging data from multiple sources into a single data system. Privacy concerns and lack of a strong business case for PHRs have also hindered their development.In the early 1990s, many commercial vendors developed Internet-based, stand-alone systems. These systems required consumers to enter and to maintain their own health information. Although some of these systems remain, they have never become popular, likely because of the onerous nature of maintaining the information. Therefore, PHRs linked to electronic health records (EHRs) and other sources of health information have become the preferred model. 1,2 Recently, several large software makers announced their plans to develop secure PHRs that could link to physicians ' and hospitals' EHRs. 3,4 Once these systems overcome the technical challenges of integrating informatio...

Sociotechnical Challenges of Developing an Interoperable Personal Health Record

“…All of these PHR systems encourage patients to play a more active role in their healthcare by giving them more responsibility for maintaining a healthy lifestyle and managing their chronic diseases, and thus may provide a cost-effective way to improve the quality of the patient care [4][5][6][7][8]. Private organizations such as the Markle Foundation and the Robert Wood Johnson Foundation are sponsoring programs like the Blue Button Challenge [9] and Project Health Design [10] which focus on supporting the development and adoption of PHR systems.…”

Personal healthcare records research: past, present and new dimensions

“…Given its proximity to (F2), the top border was entitled 'PHRs' impact: on medical conditions, healthcare processes and sociotechnical issues'. At the top of the map, for example, the Britto and Wimberg (2009) study portrays the current trends and key challenges of paediatric PHRs and how these systems have influenced the paediatrics discipline.…”

Confidentiality, consent, and caring for the adolescent patient

“…PCHR is conceptually a lifelong, single-site, interactive repository for health information from multiple sources. In addition to special pediatric issues such as immunizations records and growth charting, the unique developmental nature of pediatrics requires attention to privacy concerns [38]. That is, the PCHR for infants and young children is clearly controlled by parents, and those over the age of 18 years control their own PCHR.…”