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  1. 1. June 2009 Research Briefing Special Edition: EHRs, PHRs, and Health Care Reform page 1 Introduction page 1 EHR Definitions page 2 PHR Acceptability and Implications page 3 PHR Implementation Strategies page 4 Accuracy of Medical Records page 5 Conclusion Introduction This is a special edition Ix Research Briefing While there is a general (albeit not on electronic health records (EHRs), an unanimous) consensus that EHRs are important infrastructure component of desirable, a limited research base is available health care reform. to understand the effects of EHRs and personal health records (PHRs) on clinical A portion of the American Recovery and health care quality, patient outcomes, and Reinvestment Act stimulus funds will be various processes within the health care invested in EHRs. Health information delivery system. technology (HIT) could play a significant role in moving to an improved U.S. health care Also lacking is a comprehensive delivery system if they are accompanied by documentation of best practices involved in changes in the design of care delivery. implementing EHRs into a range of health care settings. EHR Definitions To some extent, the terms EMR, EHR, and PHR defining* and conceptualizing the difference is are used interchangeably, although each one is as follows: thought to be slightly different. One way of 1 Ix Research Briefing Number 16, June 2009
  2. 2. *Definitions above from John Halamka's "A Healthcare IT Primer post" on The Health Care Blog. What Exactly is a PHR? emergency room staff can retrieve vital Meanwhile, the Markle Foundation’s information from it in a crisis. People can Connecting for Health Initiative, in 2003, use their PHR as a communications hub: to defined the personal health record (PHR) as send email to doctors, transfer information follows: to specialists, receive test results and access online self-help tools. PHR connects each of "The Personal Health Record (PHR) is an us to the incredible potential of modern Internet-based set of tools that allows people health care and gives us control over our to access and coordinate their lifelong health own information." information and make appropriate parts of it available to those who need it. PHRs offer an What is a “Tethered PHR”? integrated and comprehensive view of health To complicate the issue of having a specific information, including information people agreed-upon definition of a PHR is the issue generate themselves such as symptoms and of if –and how – a PHR is connected to an medication use, information from doctors EHR. A tethered PHR is connected to an such as diagnoses and test results, and EHR; an untethered PHR operates information from their pharmacies and independently of an EHR. The term PAEHR insurance companies. Individuals access (patient accessible electronic health record) their PHRs via the Internet, using state-of- is sometimes used to indicate a tethered the-art security and privacy controls, at any PHR. The term PCHR (patient-controlled time and from any location. Family health record) has been used to indicate an members, doctors or school nurses can see untethered PHR. portions of a PHR when necessary and PHR Acceptability and Implications Objectives Background To learn more about consumer beliefs and Health information systems are needed not behaviors regarding untethered PHR use and only to support public health monitoring and the corresponding policy (and design) research, but also un-fragmented health implications for successfully implementing records and engaged and empowered PCHRs (patient-controlled health records). patients. Personally controlled health 2 Ix Research Briefing Number 16, June 2009
  3. 3. records are a special class of PHRs IxImplications “distinguished by the extent to which users It is noteworthy that consumers expect control record access and contents.” tailored communications based on the data Examples include Google Health, Microsoft’s in their PCHRs, as well as linkages between HealthVault and Dossia. their self-reported data and clinical data. Patients may have unrealistic expectations of Qualitative research was conducted as part the ability of existing systems to provide of a formative evaluation of the Dossia PCHR them with tailored communications. PCHR demonstration in the northeastern U.S. systems need to be expanded and Data were collected using focus groups, semi implemented in a way that facilitates -structured interviews, and analysis of email accurate Ix prescriptions. content over a two-year period (2006-2008). Predictive modeling, combined with health Findings information, demographic data, and patient Study results indicate low levels of familiarity preferences can be used to create Ix with PCHRs. Interestingly, results also information triggers. That will help create indicated high expectations for the links for consumers between their PCHRs capabilities of PCHRs. For example, and tailored educational content to help participants had high expectations for them m ake better health decisions and systems to provide them with tailored manage health behaviors effectively. communications. Participants also expected linkages between self-reported data and There is also an opportunity to educate clinical data. clinicians about the role patients may potentially play in increasing the quality of Overall, participants seemed to overestimate their medical information, if given the the extent to which their personal health opportunity. Accurate information not only information is available and transferred enables more accurate tailoring of electronically within IT systems. A common information, but presumably would increase perception among participants was feeling the accuracy of provider-facing decision personally excluded from health information support tools and/or quality of care. systems. The desire to be included and have some degree of control over their health Citation information was a motivator for consumers Weitzman ER, Kaci L, Mandl KD. to adopt and use the PCHR. Acceptability of a Personally Controlled Health Record in a Community-Based Consumer’s biggest privacy concerns related Setting: Implications for Policy and Design . to insurability, denial of employment, and/or J Med Internet Res 2009;11(2):e14. http:// denial of care. The use of an audit check appeared to be the most reassuring and accessible way to safeguard privacy and build confidence. PHR Implementation Strategies Objectives Background To explore issues related to providing patient Expanding EHRs to include consumer access access to the PAEHR (tethered PHR) and has the potential to improve patient managing the necessary corresponding experience, support patients with chronic institutional change. conditions, improve transparency, increase referral rates, and enable continuity of care for 3 Ix Research Briefing Number 16, June 2009
  4. 4. patients. However, potential barriers to the IxImplications adoption of PHRs for both clinicians and Focusing on areas of agreement points to the patients include privacy and security, change importance of flexibility and interoperability management, a lack of EHR infrastructure, and of EHR systems. Flexibility within systems conversion of clinical data into useful will allow patients to indicate and receive information for average consumers. communications according to their individual preferences or health literacy Meanwhile, there are few standards and status. This would also address one of the guidelines available to address barriers to the areas of disagreement about the timing with use and clinical adoption of PHRs. To this end, which patients should receive information. the Canadian Committee for Patient Accessible Patients could decide for themselves whether Electronic Health Records (CCPAEHR) they would like real-time test results, for assembled a group of key stakeholders and example, or if they would prefer to schedule experts in the field of EHRs and PHRs to an appointment with their doctor to receive explore issues related to providing patient and review the results. access to the EHR and managing the necessary corresponding institutional Interoperability of EHR systems also has change. major Ix implications. In addition to supporting continuity of care across settings, Findings information coordinated across/between There were several areas of consensus systems, including patient-generated among the expert panel. First, the panel information, would likely generate more agreed that patient access to personal health powerfully accurate Ix triggers. Increased information is fundamental to patient interoperability should result in more engagement and empowerment. Second, comprehensive patient data and likewise, patients should be able to add information to more specifically tailored information to help their EHR. Finally, they agreed on the patients make beneficial health decisions. importance of providing tailored educational materials to patients to meet their It is important to note that there was a lack information needs. of actual patient representation on this panel. There were several areas where there was not common agreement among panelists, the Citation first of which involves a commonly Wiljer D, Urowitz S, Apatu E, DeLenardo C, understood definition of EHRs. The second Eysenbach G, Harth T, Pai H, Leonard KJ, divergence of opinion involved how much of Canadian Committee for Patient Accessible the data patients should be able to access. Health Records (CCPAEHR). Patient The third area lacking consensus related to Accessible Electronic Health Records: the timing of data; some believed patients Exploring Recommendations for Successful should have real-time access to data while Implementation Strategies. J Med Internet others believed that real-time access might Res 2008;10(4):e34. http:// cause unnecessary stress to patients who are unable to interpret the information on their own. Accuracy of Medical Records Objectives documentation of these symptoms by To determine agreement between patient- physicians in an electronic medical record reported symptoms of heart disease and the (EMR). 4 Ix Research Briefing Number 16, June 2009
  5. 5. Background mandate requiring all health care providers Early identification of patients at risk for in the U.S. to begin using EMRs. Given that heart disease is critical to its prevention and the purpose of EMRs is primarily to facilitate successful treatment. Natural language and streamline care delivery (and secondarily processing (NLP) was used to identify used for clinical research and quality and symptoms of heart disease (chest pain, safety assurance) data accuracy issues must dyspnea, and cough) recorded in the text of be addressed. The clinical quality issues health care provider clinical notes. Reported associated with the lack of proper EMR symptoms from 1119 adult patients were documentation have yet to be investigated. compared to the symptoms reported in their clinical notes. The study was conducted at Since well-tailored prescription of the Mayo Clinic, which utilizes a state-of-the- information (Ix) is heavily contingent upon art EMR environment. the data available in EMRs, the processes by which information is collected in the EMR Findings needs to be better understood. Incomplete Significant discrepancies were found between or inaccurate data in EMRs limits the ability patient-reported symptoms and symptoms of existing EMR systems to trigger effective recorded in their EMRs, with 31% of patients information therapy. NLP offers potential for with chest pain, 38% with dyspnea, and 45% mining qualitative patient data for with cough not having these symptoms information triggers, but only to the extent recorded in the clinical notes of their EMR. that symptoms have been recorded within Although the reasons for these discrepancies the EMR. have yet to be researched and understood, data accuracy within an EMR cannot be Citation assumed, at least when it comes to patient- Pakhomov, Serguei V., et al. 2008. reported symptoms of heart disease. Agreement Between Patient-reported Symptoms and Their Documentation in the IxImplications Medical Record. American Journal of While there are some limits to how the Managed Care, 14(8):530-539. findings of this study can be generalized to all health care settings, it has special significance given the current federal Conclusion Data Quality participation will minimize errors that In this preliminary review of recent already exist within EMRs. literature, there appears to be a lack of understanding of issues around data quality Best Practices on EHR/PHRs. Although this was by no Another area where Ix may be able to play a means a comprehensive review, it is role in health care reform is by sharing interesting to note that while one article information therapy best practices. Ix best focused specifically on the issue of data practices may have direct relevance to accuracy, data accuracy issues emerged in guiding the implementation of HIT and EHR the other two articles under sections on systems in a way that will benefit patients. privacy and confidentiality. For example, Group Health Cooperative uses Both patient and provider education is secure email and after visit summaries (AVS) required to address data quality issues. to enhance communication between patients While providers may fear that allowing and physicians. Their investment in HIT has patients access to EMR data might increase been offset by benefits to both patients and errors, it is equally plausible that patient physicians. Patients use secure email when 5 Ix Research Briefing Number 16, June 2009
  6. 6. they otherwise would have called or a transparent communication tool to help scheduled appointments to ask questions. patients understand their health Also, patients leave their visits with a information, feel included in the health care document, printed out from the EHR, process, and build trust with their health summarizing their most relevant health care providers. information and follow-up instructions (the AVS). Providers receive fewer follow-up Putting the Focus Back on the Patient phone calls since forgotten information is One of the acknowledged limitations in one likely recorded on the AVS and other simple of the reviewed articles is that the group of questions can be answered via email. “experts” admittedly included minimal patient perspectives. The patient is at the The Institute for Family Health, whose center of information therapy. The patient is mission is to provide health care to the also at the center of health outcomes. The medically underserved, saw the AVS as an success of health care reform will, at least in opportunity to establish trust, which was the some part, be based on health outcomes. Ix biggest barrier to effectively providing health provides a framework for focusing on patient care to this population. The AVS is used as outcomes. Ix is a registered trademark of the Center for Information Therapy, Inc. See 6 Ix Research Briefing Number 16, June 2009