PHR and the Issue of Patients Altering HIMSS 2010-2011 Health Information Exchange Committee HIE PHR & Patient Engagement Workgroup July 2011
Table of Contents Introduction... 3 Background... 3 Issue... 4 Implications of Two Alternatives... 4 Conclusion... 5 Acknowledgments... 7 2010-2011 HIE Committee PHR & Patient Engagement Workgroup... 7 HIMSS Staff... 7 2011 Healthcare Information Management Systems Society (HIMSS) 2
Introduction As Health Information Exchange (HIE) initiatives explore the value of providing a Personal Health Record (PHR) to consumers (patients) as a value-added service, it is important for HIE decision makers involved in PHR assessments to be aware of the challenges and areas of concern this presents. One area that the industry is reviewing and assessing is the issue of patients altering professionally-sourced data within a PHR. A PHR system provides consumers with a powerful, easy-to-use, secure home for health-related information. Some PHR information is created by the consumer; other information is imported from a healthcare professional s system. The PHR is increasingly being recognized as the health record that is managed and controlled by and for the individual or consumer. It is also recognized as having the potential to be an important technology that can aid the provider in improving both quality and effective coordination of care, as well as enhancing consumer engagement in the healthcare process. Healthcare professionals must be able to rely on information provided electronically by patients. However, if consumers have the ability to alter their copies of the professional s data, the validity and reliability of the PHR information may become a serious area of concern to healthcare professionals. Background The Health Level Seven International PHR Work Group published a Draft Standard for Trial Use (DSTU) Functional Model 1 for PHR Systems in 2008. As part of their work on the next release and anticipated 2012 update to the PHR-S Functional Model Standard, the group has analyzed this from various perspectives. In the Electronic Health Record (EHR) world, strict rules guide the professional when creating and handling healthcare information. In fact, healthcare professionals are under obligation to follow a welldefined set of best practices, organizational policies, jurisdictional laws, ethical guidelines, workflow rules, and business rules. Health Level Seven s (HL7) Electronic Health Record Work Group (EHR WG) successfully codified the set of EHR system functions that would support those rules by creating a standards-based list of capabilities that EHR system vendors ought to provide to meet the professionals needs and obligations. 1 HL7 PHR-S Functional Model: http://hl7t3f.org/wiki/index.php?title=tsc_product_list_phr-s_fm (The PHR-S FM draft standard is available for free to HL7 members, and with a no-cost registration for non-members; select download from the fifth item on the list.) 2011 Healthcare Information Management Systems Society (HIMSS) 3
After the professionals needs were successfully addressed, HL7 s Personal Health Record Work Group (PHR WG) addressed the consumers needs by creating a standards-based list of capabilities that PHR system vendors ought to supply. One of the major distinctions between the two stakeholder groups (i.e., the healthcare professionals and the consumers) is that: Consumers are under no obligation to follow the same regulations that apply to healthcare professionals regarding the creation and handling of healthcare information. Issue On one hand, the consumer is the one who is in control of his/her PHR information (according to most definitions of a PHR system). On the other hand, the PHR may be populated, at least in part, by data provided and created (and owned in most cases) by another entity notably, a healthcare provider. If the consumer is allowed to manipulate the Professionally-Sourced data and a subsequent provider relies on that PHR data to help ascertain a patient s condition, an unavoidable conflict results. Many healthcare domain experts are concerned that if a consumer is able to change Professionally-Sourced data without some kind of audit indicator, then incorrect diagnosis or treatment can result. For example, how can a healthcare professional trust a PHR-based copy of a laboratory report when that report may or may not have been altered by the consumer? Implications of Two Alternatives There are two approaches for the PHR to handle the consumer making changes to Professionally- Sourced information. The implications of those two options are detailed below. A. If consumers are able to change or delete Professionally-Sourced documents or elements within documents without any notation of such changes: 1. There may be unintended patient safety risks to consumers. 2. There may be legal issues with this approach, both in response to whether or not alterations and deletions of Professionally-Sourced data are flagged, and also based on whether physicians have any protection if they treat a patient based in part on information in the consumer s PHR. 3. There is a risk that widespread adoption of PHRs by physicians will be impeded if they (providers) believe that Professionally-Sourced copies of PHR data are compromised without indicators. B. If consumers are able to change or delete Professionally-Sourced data and the change is noted by an indicator of some kind: 1. Consumers may lose some or all of their ability to correct inaccurate information in their own PHR without the corresponding burden of explaining (or defending) such changes to providers. 2. Consumers may lose some or all of their ability to determine which information in their PHRs will be shared with third parties, or which third parties will be able to see that something in the PHR has been altered (with recognition that changing, hiding, or 2011 Healthcare Information Management Systems Society (HIMSS) 4
combining Professionally-Sourced data are types of data-alteration). Privacy advocates assert that this type of access is a privacy violation; however, medical professionals view this type of access as critical for trusted communications and for the ability to provide timely, appropriate care. 3. Consumers may choose not to include Professionally-Sourced data in their PHRs or even not to use a PHR if they are unable to delete or change information anonymously. The result? A PHR without provider use may be less than optimal, but a PHR without valuable Professionally-Sourced data, or without patient use, is a poor outcome. 4. Consumers may find themselves constantly having to explain (defend) corrections that they make to their own PHR, due to the fact that Professionally-Sourced data can be inaccurate for example, a given patient may receive different diagnoses from different clinicians for the same illness. 5. The rights (versus the Control Over Information Disclosure) that most patients currently enjoy would be diminished, because the current state of disclosure by patients to healthcare providers is often the result of personal health information written by the patient on a medical clipboard or relayed to a doctor orally, where the patient is in nearcomplete control of the information provided. 6. Consumers have concerns that they may face discrimination in access to health insurance or employment if the PHR that they disclose to their insurer or employer has fields that are denoted as altered Professionally-Sourced data or if key data about them is made publicly available. An important issue for an HIE that is considering the incorporation of PHR data is that of patient control of the content of a PHR, specifically with respect to the alteration or removal of data, or of documentation that is sourced by a clinical professional (e.g., physician, nurse, physical therapist, or pharmacist), or by a system managed and maintained by a clinical professional. For example, how could a professional trust a lab report that may have been altered by the consumer? If a PHR system offered by an HIE is constructed in such a way that a healthcare professional cannot quickly and easily trust its data, what is its value? And what is its risk? Furthermore, an inherent inability to trust PHR data could be a significant barrier to provider adoption and ultimately leveraged within HIE initiatives. Hopefully, consumer preferences and options in PHR systems can be managed in a way that promotes the trustworthiness of Professionally-Sourced data. Conclusion Without a doubt, the utilization of PHRs can be of significant value in the patient care delivery process. To that end, some HIEs are exploring the benefits of offering a PHR. As HIE managers, directors and sponsors assess the impact and value-proposition for adding a PHR service for HIE users, the issue of how professionally-sourced data is managed is an important consideration. 2011 Healthcare Information Management Systems Society (HIMSS) 5
Healthcare professionals must have trust and confidence in the information provided in the PHR in order to rely on this electronic tool in providing patient care. One key issue for healthcare professionals is the consumer s ability to alter PHRs Professionally-Sourced data. From the healthcare professional s perspective, the ability of consumers to alter this data without proper annotation diminishes the validity and reliability of the PHR. This can create unintended consequences if altered data is used for clinical decision-making purposes, resulting in a negative impact on patient care treatment outcomes. The challenge for the healthcare industry is to identify the most effective way that PHRs can be used by consumers, patients and healthcare professionals. In achieving this goal, many questions require addressing, including the following: 1. If a consumer alters or deletes Professionally-Sourced data (either within a document element or an entire document), should there be an indication that such an action was taken by the consumer? 2. Alternatively, if consumers own and control the PHR, should they be free to determine its content as long as attribution of data contained therein is correct? 3. To what level of detail should that indicator go? 4. Should the indicator reveal that data has been changed but not reveal the specific data element, or should it delineate the specific data element? As with the introduction of any new technology or tool into an industry, there is a transition period of adoption that includes identification of issues and challenges. PHRs are currently going through this process, which will result in effective and efficient ways for this electronic tool to be used in the patient care delivery process. The healthcare industry is actively exploring the policy and operations impacts of the challenges raised by the above questions. HIE initiatives should keep abreast of the activities within the PHR arena and the future resolution of these challenges and issues, so they can be proactive with incorporation of PHR strategies and activities into their initiatives. This paper has explored just one of the many complexities of how data is brought into and represented in a PHR. The PHR must provide utility to the patient to garner the patient s attention and use. Likewise, the PHR must have a clear value to providers for them to advocate their use to patients, and to use information that patients may enter. The HIMSS HIE Committee will continue to track the PHR as it evolves and becomes an important part of the HIT landscape and will offer additional views and discussion on the intersection of PHRs and HIE. 2011 Healthcare Information Management Systems Society (HIMSS) 6
The inclusion of an organization name, product or service in this publication should not be construed as a HIMSS endorsement of such organization, product or service, nor is the failure to include an organization name, product or service to be construed as disapproval. The views expressed in this white paper are those of the authors and do not necessarily reflect the views of HIMSS. Acknowledgments 2010-2011 HIE Committee PHR & Patient Engagement Workgroup This white paper was developed under the auspices of the 2010-2011 HIMSS Health Information Exchange Committee. Special acknowledgment and appreciation is extended to Lenel James for serving as primary author of this paper, and also to John Ritter, HL7 Co-Chair, PHR & EHR Workgroups for content review and editing. The HIE Committee PHR & Patient Engagement Workgroup members who participated in development of the white paper are: Noam Arzt, PhD, FHIMSS HLN Consulting, LLC arzt@hln.com Barbara Cox Gap Consulting, Inc. bcox@gapconsultinginc.com J. David Kirby Kirby Information Management Consulting, LLC Dave@KirbyIMC.com David Minch, BS, FHIMSS John Muir Health Dave.Minch@JohnMuirHealth.com Jeffrey Blair, MBA LCF Research Jeff.Blair@LCFResearch.org R. Lenel James, MBA, CPHIT, CPEHR Blue Cross Blue Shield Association Lenel.James@bcbsa.com Kevin Lemire, CPHIMS Medicity KLemire@Medicity.com Robert (Joe) Turk, MBA, CPHIMS Cleveland Clinic Turkj2@CCF.org HIMSS Staff Pam Matthews, RN, MBA, CPHIMS, FHIMSS Senior Director, Regional Affairs HIMSS pmatthews@himss.org 2011 Healthcare Information Management Systems Society (HIMSS) 7