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What factors should be considered when selecting a pediatric and child health friendly PHR?

Unlike the selection of an EHR, the task of selecting a PHR is not exclusive to providers.  Due to the wide variety and accessibility of many currently available PHRs, the selection decision can be made by patients and families, providers, or even payers.  In fact, a 2010 examination by the Medical Library Association (MLA)/National Library of Medicine (NLM) Joint Electronic Personal Health Record Task Force go to exit disclaimer has identified 117 PHR systems, 91 of which were viable.  Furthermore, the task force notes that nearly half of these PHR systems are not linked to a currently existing EHR product.  The EHRs that do provide the PHR functionality can lock patients into adopting the PHR that is linked to their providers’ EHR, however.  This and similar factors can influence the decision of these stakeholders to adopt a particular PHR, and thus certain aspects of the PHR may differ depending on the stakeholder making the selection decision.  

Modern PHRs range from information stored on a computer, portable hard drive or PDA, Web-based platforms, and hybrids of both.  With the advent of the EHR into the practice of pediatrics, there has also developed a trend of offering a PHR along with the EHR system, according to a 2009 article in Pediatrics go to exit disclaimer.  A PHR that is tied to and is populated with information from the EHR is referred to as a tethered PHR.  This type of PHR can also contain information about lab and other test results. Tethered PHRs, according to The Children’s Partnership, are more often sponsored by providers.  Payers also may sponsor PHRs already populated with a patient’s claims data, rather than the clinical data from an EHR.  An untethered PHR, however, would be a PHR into which the patient and/or family provide the health data.  The untethered PHR would likely be a Web-based application selected by the patient and family and under their control.  In an untethered PHR, the patient and family would need to have test results transferred to the PHR or would have to manually enter the information themselves.

A stakeholder will also likely confront the challenges and barriers to PHR implementation when selecting a PHR.  Connecting for Health go to exit disclaimer from the Markle Foundation highlights some of the barriers faced by providers such as cost of and lack of reimbursement for PHR use, workflow adjustments, changes to the patient-doctor relationship, difficulties with technology, lack of awareness, insecurity about the accuracy of patient-entered information, and concerns about liability.  Patients and families, on the other hand, may face barriers including lack of interest in tracking health information in the absence of a chronic condition and concerns surrounding the privacy and security of their health information.  Figure 2-1 in a report prepared for HHS and RTI illustrates the steps involved in selecting a PHR, and takes these barriers into account. This visualization notes that before selecting a PHR, there should be an analysis of the PHR offerings available, critical information such as privacy and security concerns and ease of use, and the consumer’s needs (portable information, information for emergency situations, etc.). 

Related Resources:

Helping Consumers Select PHRs: Questions and Considerations for Navigating an Emerging Market go to exit disclaimer- AHIMA
Linking Children's Health Information Systems: Clinical Care, Public Health, Emergency Medical Systems, and Schools go to exit disclaimer- Pediatrics
How to Select a Personal Health Record (PHR) go to exit disclaimer- MyOptumHealth
Health decision making, circa 2015 go to exit disclaimer- Connecting for Health

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