Standards and Guidelines for Personal Health Records in the United States: Finding Consensus in a Rapidly Evolving and Divided Environment

Abstract

Health care spending in the U.S. over the past decade has dramatically increased over the past decade and is expected to rise to 20% of GDP in the United States by the end of the decade. In 2010, the U.S. Congress approved the Health Care Reform Act with a critical component of this legislation being the adoption of health information technologies (i.e. EMRs, EHRs, PHRs, etc.) aimed at transforming the health care system. Consumer-driven health care models are seen as essential to control the escalating costs of health care. The objective of this research is to canvas the landscape of existing standards and guidelines relating to electronic personal health records (PHRs) and to evaluate the level of adoption of these standards and guidelines amongst current vendors. Through this effort, we propose a consensus standard for PHRs consisting of 14 data components, 11 of which should be essential for all PHRs and 3 additional recommended data components. Through a survey of existing PHR vendors, we observe a low level of adoption of existing standards in commercially available PHR products and note a wide variation (36-73%) of inclusion of critical and desired data components. Further, we propose 4 key features and services based upon a review of the existing literature to facilitate consumer adoption and to improve usefulness of PHRs. By proposing a consensus standard for PHR data components and features, we seek to provide clarity to developers and vendors of HIT products to facilitate product development, interoperability, and integration and data exchange with existing EMR/EHR products.

Prerequisites of Personal Health Record for Chronic Kidney Disease: A Scoping Review and Evaluation of the Content Validity

“…These differ may be due to cultural differences between Iran and other countries might influence the choice of key data sets/functionalities. Essential functionalities that recommended by experts in designing PHRs for CKD were consistent with the results of other on literature [6,10,11,18,19,26,28,29]. An innovative function under strong focused of experts is the "custom patient education".…”

“…Considering that advanced directives are not popular in Iran, the number was expected. These findings contrast with other countries which "advanced directives" is very important and, indeed, the legal right of the patient [28,36]. These differ may be due to cultural differences between Iran and other countries might influence the choice of key data sets/functionalities.…”

“…Based on the results of our study, 20 core data sets were determined. Core data items proposed by this study covered all 11 data components essential for PHRs that were prepared by consensus set of standards of CCD, CCA, CCR, AHIMA, AMIA, DICOM, immunizations, medications, allergies, family history, lab/test results, and procedures/surgeries [28,32]. The corresponding PHRs for CKD, 'advanced directives', was checked as unnecessary in most of responses by experts.…”

“…Resource type Publication Date Country/Institution Venuthurupalli [18] Article (Cross sectional) 2017 Australia Navaneethan [19] Article (Cross sectional) 2012 USA Nakashima [10] Article (Cross sectional) 2019 Japan Mendu [6] Article (Prospective study) 2014 USA Drawz [20 Article (RCT) 2012 USA Mendu [21] Article (Cross sectional) 2019 USA Drawz [22] Article (Review) 2015 USA Khan [23] Article (Cross sectional) 2013 USA Venuthurupalli [24] Article (Cohort) 2018 Australia Bruland [25] Article (Case report) 2016 Germany Do [26] Article (project report) 2011 USA Archer [9] Article (Review) 2011 Canada Kaelber [11] Article (Cross sectional) 2008 USA Gearon [27] Report 2007 California Tran [28] Guideline 2012 USA Burke-Bebee [29] Report 2010 USA Johnston [30] Report 2007 AMIA Roehrs [31] Article (Review) 2017 Brazil Tang [32] Article 2006 USA Dickinson [33] Guideline 2014 USA Unknown [34] Report 2012 European Katehakis [35] Article (Review) 2017 Greece…”