Engaging the patient in healthcare: and implications

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1 Engaging the patient in healthcare: An overview of Personal HehEalth Record systems and implications for Alberta

2 Table of contents Introduction 1 Overview of Personal Health Records (PHRs) 2 Components of intelligent patient-centric care 5 PHR solutions 8 Evaluating PHR capabilities 11 Comparison of vendors 16 Benefits and caveats of PHR systems 19 Implications for Alberta 24 Next steps 31

3 Engaging the patient in healthcare: an overview of personal health record systems and implications for alberta Health systems around the world are grappling with ways to improve care, restrain costs and meet growing demand. Among the most intriguing concepts in this effort is shifting the focus of care management to patients equipping them with the knowledge to make more of their own decisions and engage the health system more efficiently. This approach is built on the simple premise that by giving patients access to their records, targeted information, and online health-management tools, the number of unnecessary visits and treatments can be reduced, chronic diseases can be managed more effectively, and clinicians can devote more time to patients who truly need face-to-face care. This white paper provides an overview of this approach, with a specific focus on emerging Personal Health Record (PHR) systems and tools that enable patient-centered care. This report is the result of a two-week investigation, which included interviews with McKinsey experts in global healthcare and IT, an expansive literature review, and analysis of industry and market research. It is intended to provide a broad overview of the pros and cons of PHR-based approaches, as well as a summary of the products, technology and markets all viewed from the perspective of applicability to Alberta Health Services. This paper provides viewpoints on two areas we have been asked to investigate: 1) Overview of Personal Health Records Current evolution of healthcare IT and the shift towards patient-centric care Categories of PHR systems Common features and capabilities Comparison of vendors in the market today Qualitative and quantitative benefits and caveats of PHR systems 2) Implications for Alberta Current IT footprint - How PHRs can fit with AHS s strategy and IT aspirations Design choices for a PHR system An evaluation of three IT architecture approaches Next steps prior to embarking on a path towards patient-centric care

4 OVERVIEW OF PERSONAL HEALTH RECORDS

5 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta Evolution of IT-enabled, patient-centric care To deal with the challenges facing health systems, operators are harnessing information technology to tailor care more closely to the needs of patients and make the system easier to navigate. This patient-centric model is driven by three factors: the dramatic rise in cost of care, the inability to expand capacity to match the exponential increases in demand for care, and continuing patient demands for higher quality of care. Under an IT-enabled, patient-centric model, health systems integrate care delivery across the continuum of services, from prevention to followup, and coordinate care across all settings. In addition, this approach promises to provide the information to enable health systems to quickly respond to changing patient demands and usage trends. This emerging care model depends heavily on technology on the availability of electronic patient health records and IT systems that can support care across all settings and accommodate direct interaction with consumers. These systems will need to accomplish four things: Enable access to comprehensive real-time patient data for clinicians and administrators across various care settings and facilities. Provide clinicians with tools to improve their partnership and coordination across different care settings. Give patients tools that enable them to help manage their own healthcare. Achieve a level of integration that will allow data to flow seamlessly across the health system to enable the required tools and capabilities (see Figure 1). Figure 1. Data must seamlessly flow among stakeholders to enable an intelligent, patient-centric care model Single portable PHR Health system Full health informatics Real-time public health management Population-based healthcare strategies Holistic view of health (including social care) Lifetime disease management Social services Cost and quality information PATIENT Mass customization of personal life care plans Alert! STAFF Care provision Single view of patient health record across all care settings Real-time access to accurate diagnostic data Automated resources and workflow management Predictive diagnoses and condition alerts Multichannel alerts Source:McKinsey analysis Funding mechanisms Accurate and unbundled costing Real-time incident-level pricing Automated claims and payments Patient lifetime budget

6 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta The ultimate goal is an intelligent, patient-centric care model a system in which all relevant information is available in real time to multiple parties in all care settings, supporting tailored care for each patient (see Figure 2). Such systems Figure 2. IT enablement must evolve to support a patient-centric care model Evolution of IT enablement Intelligent patientcentric care Patient-centric information Basic information shared Manual integration No integration Source: McKinsey analysis Key characteristics Full patient information shared across health care settings and nonhealth organisations Patient record contains wellness information, such as exercise and social care profiles Pathway administration system is automated, customisable and integrated across settings Predictive, real-time modelling to support both health analytics and individual case diagnosis Full patient information shared across health care settings Patient record is based on standard clinical terms and is structured to allow rich analytics Some pathway administration (e.g., scheduling) is automated and integrated across settings Real-time alerts based on prespecified rules are used for health analytics and individual case diagnoses Summary patient information is shared across health care settings, but is not sufficiently structured or detailed to allow rich analytics Pathway administration systems are automated, but not integrated Health analytics is based on summary population data and is manual Patient information is not automatically shared across settings Pathway administration is manual; basic health analytics is possible No information is shared across settings within the health system Patient may carry partial paper-based records between care settings Figure 3. Current IT enablement projects and progress of select health systems No integration Manual integration USA Basic information sharing Germany Stuck Stuck Failed Stuck Patient-centric information will evolve over many years, requiring operators to continuously integrate new functions and capabilities. Success will also depend on evolution of patient records, from simple Electronic Medical Records, to Electronic Health Records that provide insights across treatment facilities, and finally to Patient Health Records, which enable the patient-centric approach. Progress Intelligent patientcentric care EPIC Future plan This evolution toward patient-centric care is taking place in health systems across the globe. In each, administrators and policy makers have made IT enablement a core priority. However, systems have taken different approaches and find themselves in different phases of adopting intelligent patient-centric care (see Figure 3). For example, Kaiser Permanente, a large hospital system in the U.S., has been expanding its IT capabilities by investing in the core infrastructure provided by Epic Systems and is very close to delivering patient-centric care. In contrast, the Philippine health system is using a combination of vendors and internal solutions. Each component is launched as soon as it is functional (even with limited features). Once these systems are operational, the Philippine health system will work to integrate them. Malaysia Qatar Stuck Risk Philippines Source: McKinsey analysis

7 Engaging the Patient in Healthcare: an Overview of Personal Health Records Systems and Implications for Alberta COMPONENTS OF INTELLIGENT PATIENT-CENTRIC CARE

8 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta In order to achieve this evolution, health systems will need to rely on three components that serve as the foundation of data transfer and availability Electronic Medical Records (EMR), Electronic Health Records (EHR), and Patient Health Records (PHR). These are the electronic records of patient information controlled by a care center, a health system, and a patient, respectively. However, from a broader perspective, we refer to these systems as the comprehensive set of tools that enable data storage, transfer, and analysis across health systems. For the purpose of this paper, these systems are defined as follows: Electronic medical record (EMR) systems EMR systems are a set of tools that exist at the site of care delivery to store and aggregate patient medical records. 1 They are comparable to filing systems within a particular facility. Each patient can have multiple EMR entries within a health system. EMRs are limited to information of a particular facility and do not interact with other systems. As a result, each facility must still gather patient data from other facilities to create a comprehensive patient record. Figure 4. The patient-centric model requires seamless integration of all three electronic health records systems Importance for enabling intelligent patient-centric care Source: McKinsey analysis EMR Provides a local repository and interface for clinicians that enables patient data to be stored electronically EHR Aggregates and stores data from local EMRs to create a single patient record across multiple systems Provides healthcare system with data to improve planning, enhance coordination across care settings and facilities, and help physicians make decisions about treatments (e.g., checking drug reactions) Level of integration required Electronic Health Record (EHR) systems EHR systems aggregate data from multiple EMRs across a health system or multiple health systems. 2 This aggregated data forms the basis of a unified, comprehensive patient record that can be accessed across care settings and is automatically updated for all users. The goal of EHRs is to provide one central comprehensive record for each patient that can be accessed across facilities and care settings. Personal Health Record (PHR) systems PHR systems are patient-facing portals that contain patient health information and allow patients to interact with the health system. The Markle Foundation defines a PHR as a set of tools that allow patients to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. 3 The key difference between PHRs and EMRs or EHRs is patient access. The data in a PHR system can come from EMRs, EHRs or directly from the patient including such non-clinical information as exercise habits, diet, etc. PHR Provides a portal that allows patients to view and add health information Pulls data from an EHR and accommodates patient input to update EHR Provides a user interface for tools that allow patients to interact with the health care system (e.g., ability to schedule appointments, send messages to clinicians) All these systems provide repositories and portals to access data. However, each tool serves a different purpose (see Figure 4). Ultimately, the value of these systems is in providing the data and user interfaces to enable other applications and functionalities. It is important to note that the degree of information provided in an EMR, EHR or PHR is a function of the clinical information systems that populate the patient record (e.g., lab, diagnostic imaging, pharmacy, structured electronic charting, clinical decision support). 1 Davis, Mike and Garet, Dave. Electronic Medical Records vs. Electronic Health Records: Yes, There Is a Difference. Rep. 26 Jan HIMSS Analytics. 25 May 2009 <http://www.himssanalytics.org/docs/wp_emr_ehr.pdf>. 2 Davis Markle Institute, Connecting for Health: The Personal Health Working Group. Rep. 1 July May 2009 <http://www.connectingforhealth.org/ resources/final_phwg_report1.pdf>.

9 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta Without seamless integration between core clinical functions and the EMR or EHR systems, the value of the record is severely limited. At each step of the evolution, these electronic records systems can provide significant incremental value to patients, clinicians and administrators (see Figure 5). As health systems evolve their IT enablement infrastructures, value creation shifts from building capabilities for internal stakeholders on EMRs and EHRs to building tools for patients on PHRs. These patientfacing tools will allow consumers to increase their involvement in their own healthcare. Today, Alberta is able to share some basic patient information across the province. However, gaps in information exist across care settings (e.g., primary care), regions and core functionality (e.g., structured patient charts). Figure 5. Capabilities required to drive value and the resulting value added at each step of the evolution of IT enablement IT capabilities driving value No integration Few disparate IT systems across the healthcare systems Nonstandard data across the system Records are kept on paper Manual integration IT infrastructure exists at facilities; no integration across system Data must be transferred manually (e.g., phone, fax) Records are kept on local EMRs Basic information shared Summary patient data is available across the province via limited integration Records are kept on an EHR Patient-centric information IT systems are increasingly integrated Granular patient data is available with some automated analytics Records are kept on or accessible through a PHR Intelligent patientcentric care IT systems are integrated and allow bidirectional data transfer Real-time, predictive health analytics Records are kept on or accessible through a PHR that offers multiple tools to interact with providers Key value added Source: McKinsey analysis Requires little IT investment Historical data available for systemlevel analysis, but requires significant effort to consolidate and standardize data Limited real-time data is available for system-level analysis, enabling more tailored resource planning and population analytics Quality of care increases because physicians see summary patient data from different care settings, enhancing decision making Granular real-time data enables detailed analysis to improve resource planning and population analytics Improved coordination across care settings, but must be done manually Improves quality of care by providing full patient information (e.g., drug interactions) and enabling evidencebased medicine Ability to measure system/clinician performance Real-time analytics are increasingly automated, allowing for greater capacity balancing and predictive analysis of population trends Increases ability to coordinate across the province, enabling customization of patientcare plans Quality of care improves because system detects potential conditions, sends alerts based on full patient context and history (full disease management)

10 Engaging the Patient in Healthcare: an Overview of Personal Health Records Systems and Implications for Alberta PHR SOLUTIONS

11 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta The shift to a patient-centric care model will depend on the evolution of information access and tools beyond EHR and EMR systems controlled by healthcare providers to PHR systems. PHR systems are intended to reach patients outside of care settings, influence their behaviors, and satisfy their demand for greater information and access. If PHRs can deliver these capabilities, they will have tremendous impact in enabling and encouraging patients to be more active in their own care. Evolution of PHRs The original goal of PHRs was simply to shift the control of health information from the hospital system or care site to patients, allowing information to be more portable across health systems. This is particularly relevant in countries such as the U.S., Germany, and Austria, where consumers move between different health systems whose EHR systems are not compatible with one another. The PHR consolidates health information from independent health systems, which patients can provide to healthcare providers as needed. Providing data portability through a PHR is less of a concern in places such as Alberta, where most patients receive care from a single health system AHS. An EHR, rather than a PHR, could provide the majority of the functionality needed to coordinate care across care settings. Patients seeking care outside Alberta or who often visit Alberta (e.g., migrant workers) would find the portability of a PHR attractive, but the vast majority of patients are not in these situations. However, PHR technology is evolving well beyond providing a consolidated patient record in ways that make it more widely applicable and valuable to health systems including Alberta. Vendors are adding applications and tools to PHR systems that allow the PHR to function as a platform for patients to exchange information and interact with the health system (e.g., scheduling appointments electronically). For example, vendors are expanding PHR systems to host disease forums for patients and to remotely monitor patients. Eventually, the PHR system can become a one-stop shop for patients to manage their health an attractive benefit for Albertans. PHR categories The PHR market is still very immature, and vendors are taking very different approaches. However, there are three distinct categories of PHRs, differentiated by their underlying IT architectures: Stand-alone PHRs Principally designed to enable portability, these systems provide an external user interface and data repository but cannot automatically interact with EHRs and EMRs. Patients can enter any data they would like to share with providers (e.g., test results, medications, medical histories) and permit access to specific individuals (e.g., primary doctor). While these systems may have some ability to automate data entry, they are not integrated with EHRs or EMRs; patients must submit requests to their providers to access their complete records and are responsible for keeping their personal files up to date. These systems are primarily launched by patients or implemented by employers in an effort to improve employee productivity (i.e., reduce sick days). Tethered PHRs These systems are an extension of a provider s health information system that allows patients to view their personal information through a patient portal. Typically, these solutions provide a user interface and data exchange for a system s EHR or EMR and related systems. They are tethered because they are linked to a particular health system and the records are not portable. The benefit of these systems is that data is stored within the health system s existing infrastructure, so records do not need to be transferred or stored by a third party. However, these systems are currently limited in their ability to support content or tools, such as libraries of articles and specialized search to assist patients with access to education. The applications and features that can be directly connected or built onto tethered PHRs are limited to that vendor s offerings. Interconnected PHRs These systems combine elements of standalone and tethered PHRs, providing an external repository of health information that users can control and to which health systems can connect. The PHR functions as the user interface for a broad set of IT functions that can be linked to or built into the PHR through the vendor s developer tools. Given this flexibility, these systems can also collect data from multiple repositories across multiple settings or health systems.

12 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 10 Largely as a result of these different design principles, the capabilities and limitations of each segment vary significantly (see Figure 6). Health systems must determine their own goals for patient interaction, and adopt a PHR system architecture that drives these benefits. If AHS s goal is to implement a patient-centric approach and provide tools that improve patient engagement and reduce inefficiencies in the system, a tethered or interconnected PHR system is the most viable option. Figure 6. The three PHR architectures vary greatly in their current capabilities and limitations Interconnected PHRs Stand-alone PHRs Tethered PHRs Key differences between PHR segments Rating Low High Maturity of the market Breadth of features that can be incorporated Portability of records Level of integration with internal IT systems Interoperability with external IT systems Flexibility to alter the user interface and add features Low cost of tools (excluding system integration costs) More favorable Source: McKinsey analysis Global context Several health systems around the world have recognized the potential value of PHRs and are currently developing PHRs for their patients (see Figure 7). These systems have all chosen tethered solutions, largely because interconnected PHRs have emerged only in the past eighteen months. Still, the scope of these PHRs varies tremendously, reflecting the goals of each health system. Figure 7. Examples of PHR efforts under way in major health systems. Each health system uses a tethered PHR but provides different functionality PHR capabilities U.S. Department of Veteran s Affairs My HealtheVet Kaiser Permanente My Health Manager Cleveland Clinic MyChart Denmark MedCom Cancer Care Ontario My CARE Source Norway MyRec L'hôpital Lariboisiere Philippine Department of Health Patient portal provides automated prescription refills, healthcare information research and requests to view health records Telemedicine system for chronic disease management, including devices to gather patient information, monitoring, and videophones 3 million users; 30% of members actively use online services (more than 50% in some areas) Members have access to a Personal Health Record, enabling online appointment scheduling, no-repeat prescription ordering and fulfillment, physician ing and access to detailed medical information (e.g., lab results, physician notes) Members can view their medical information, get reminders, schedule appointments, request prescription refills, manage their health with dashboards, and message physicians Online patient portal with more than 800,000 user accounts Members can access advice on health and treatments and access telehealth systems, including videoconferencing and home monitoring Patient portal for cancer patients, including online forums and remote-monitoring resources Patients can view health information uploaded by physicians, share information with the different actors, find tailored information, fill out forms, use a specialized search engine, and communicate with healthcare providers Portal offers no information from the EHR, but there is ambition to include this in a controlled way Online patient and clinician portal with more than 700,000 users Patients and clinicians can view comprehensive patient health information and download uncompressed diagnostic images PHR has become a high priority for the health system, which is launching multiple efforts Project goals include providing secure USB storage devices of patient data and free patient software Austrian Health System ecard Population will receive E-cards that contain insurance information and basic medical histories. Cards can be read and edited by healthcare providers and pharmacists Source: McKinsey analysis

13 Engaging the Patient in Healthcare: an Overview of Personal Health Records Systems and Implications for Alberta 11 EVALUATING PHR CAPABILITIES

14 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 12 The PHR market is evolving and no vendor has yet achieved a significant advantage in the core functionality of providing visibility into patient health data. The key differences at this point are in scope of data (e.g., types of tests, drugs, and patient histories included), control and storage of data, information sources, security, and methods of access. Selection of vendors based on these criteria will largely depend on intended objective and choice of architecture. The more interesting and relevant features to consider are the built-in/integrated applications and tools that can be added to a patient portal. These features are categorized into five main groups: decision support, social networking, provider-patient interaction, disease/health management, and financial services. While not all of these capabilities are fully functional, many are already available, being piloted, or well into development. As health systems consider which features to incorporate, it is important to consider cost and complexity; some features will require substantial investment to enable integration on existing infrastructure. In such cases, the PHR serves as a user interface to functions or modules provided by third-party vendors. Figure 8. How Walmart s PHR system helps employees make better-informed decisions Overview Decision support In 2008, Walmart launched a PHR system for employees, with the goal of improving employee health to reduce medical expenditures and improve productivity Architecture Walmart built its PHR on three layers: Dossia allows partner vendors to export a patient s health information to a repository Indivo, an open-source solution developed at Children s Hospital Boston, provides a patient interface WebMD provides tools to allow patients to manage their health and find information Features that support user decision making Education resources allow users to make informed decisions Portal provides targeted educational resources on conditions and treatments Symptom checker allows patients to determine if they need medical attention Specialized search allows users to find additional resources Users can search a comprehensive set of external resources and journals Patient alerts provide notifications when necessary Patients can sign up for alerts when they need prescriptions refilled or to schedule follow-up meetings Patients can upload health information (e.g., glucose meter readings) and portal will alert users if they need to seek medical attention either based on spikes or trends in data Reviews of physicians and providers enable informed choice of where to get care Reviews and histories of physicians and providers are aggregated from multiple sources Source:Infoweek October 1, 2008; WebMD While the web has provided consumers with access to undifferentiated health information, PHR vendors 4 hope to give patients the tools to make truly informed decisions. There are four types of decision-support tools that vendors are integrating into PHRs: Pooled educational resources: Pre-selected collections of articles and information on specific conditions and recommended treatments. Specialized search engines: A guide to reliable sources of information across the web. and text message alerts: Automatic notifications about refilling prescriptions or seeing doctors based on patient information, allowing patients to make decisions about when and how to reach out to providers. Physician and provider reviews: Consumer and third-party ratings of healthcare facilities and clinicians to inform patient decisions about where to seek care. One of the core features of Walmart's employee PHR system is a WebMD tool that provides internal and external resources to educate and inform workers about healthcare issues (see Figure 8). The system, which was implemented to improve employee health and reduce medical absences, includes an online symptom checker to help determine when a clinician is required. Employees can also sign up for prescription alerts and review aggregated feedback on physicians and other providers in their area. Norway s health system, Cleveland 4 These include PHR vendors and vendors that provide other health information systems that can interface with a PHR architecture

15 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 13 Clinic, Kaiser Permanente, Beth Israel Deaconess Medical Center, and the Mayo Clinic are among the health systems that have placed an emphasis on developing decision-support capabilities and offer similar features on their respective PHRs. Social networking Tools associated with social networking (blogs, communities, , real-time chat) can be used in PHRs to provide patients with more access to information and support from their doctors. One common feature is patient forums, where users can ask experts (i.e., vendor employed clinicians) questions regarding conditions or treatments. Some vendors are beginning to add instant messaging and chat tools to enable patients to talk directly with experts and get questions answered in real time. An expert can answer questions from several people at the same time, potentially reducing the volume of inquiries on provider hotlines and care centers. For example, Walmart's PHR includes forums where patients can discuss their conditions with experts and other patients. An independent, stand-alone system provided by RevolutionHealth allows users to connect directly with other users and create virtual support groups. Figure 9. How Kaiser Permanente built up its PHR capabilities to enable patient-provider interaction Overview Since 2005, Kaiser Permanente has been building one of the most comprehensive PHR systems, which is fully integrated with its IT infrastructure Over 3 million of Kaiser Permanente s 8.7 million members have signed up for the PHR tool Architecture Provider-patient interaction Built on several integrated health management tools powered by Epic systems MyChart (from Epic systems) provides most of the functionality that lets patients connect to Kaiser Permanente's EHR and other tools (e.g., scheduling software) Users can log on to the portal through Kaiser Permanente s website Most features are also integrated with and can be accessed via Microsoft Healthvault Features that enable patient-provider interaction Users can send secure messages to their doctors Patients can ask physicians questions 24 hours a day via an tool built into the system. More than 600,000 messages have been sent to physicians by users Kaiser Permanente is looking to expand capabilities to provide e-visits to replace some follow-up visits E-scheduling tool allows patients to schedule appointments Patients can view physician availability Patients can electronically select or modify their appoint times Portal provides users with multiple-prescription tools Patients can request copies of their prescriptions Patients can automatically order refills; almost 1.5 million prescriptions have been filled via this tool Source:Kaiser Permanente press releases PHRs offer a score of features to improve the interaction between providers and patients. This is a rapidly evolving area and the focus of much vendor innovation. Currently, some of the major capabilities include: Secure messaging: Patients can ask their physicians or clinicians confidential questions or offer post-visit reports. Clinicians can also use the system to check on patients to ensure that a recommended treatment is being used and is indeed effective enabling the doctor to intercede immediately if complications arise. Telehealth: Patients can provide results from homefor basic exams with physicians over the internet. Some vendors are even working with medical device manufacturers to develop products (e.g., glucose meters) that automatically upload information into a PHR. Pre-appointment questionnaires: Instead of having nurses or receptionists gather basic information at the beginning of an appointment, patients can fill out an online form prior to their appointment. Scheduling tools: Patients schedule appointments directly, using the PHR portal, which can show availability across multiple sites/practices. Prescriptions: Patients can order refills online and retrieve copies of existing prescriptions. Kaiser Permanente has launched a PHR that provides users with all these tools and is looking for new ways to improve and expand the current offering (see Figure 9). In addition, other health systems such as Cleveland Clinic,

16 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 14 the health system of Norway, the health system of Denmark, the U.S. Department of Veterans Affairs, and Beth Israel Deaconess Medical Center have implemented various subsets of these tools. Disease/health management Among the most important potential benefits of the patient-centric approach is more effective disease management. As such, one of the most common features in PHRs is a health dashboard that allows patients to track several dimensions of their health, from exercise or nutrition habits to annual visits. Users can use the dashboard to program reminders, warnings, or suggestions, as they choose. Dashboards that help manage chronic diseases such as diabetes or congestive heart failure can be highly effective, capturing input from home tests (e.g., glucose readings) and generating warnings based on spikes or other dangerous trends. To make this easier, vendors are working with medical device manufacturers on instruments that automatically synchronize with a patient s PHR. This data could also be sent to clinicians for remote monitoring; patients would only need to visit the doctor when they received a message from a healthcare provider. Recently, Cancer Care Ontario, in association with the Ontario Hospital Association, launched My Care Source, a system to help cancer patients manage their conditions (see Figure 10). In addition, Denmark s health system has launched a PHR system called MedCom that incorporates health tracking and disease tracking tools that target all patients and allows them to input and monitor home test results (e.g., blood pressure, glucose levels). Furthermore, Cleveland Clinic, in conjunction with Microsoft HealthVault, provides tools to help users log and track their diet and exercise histories. Figure 10. How Cancer Care Ontario incorporates disease and health-management tools into its PHR system Overview In 2004, Cancer Care Ontario in conjunction with Ontario Hospital Association, launched a patient portal called My CARE Source as part of a provincial e-health initiative Tool is currently only in place at the Grand River Hospital Architecture My CARE Source is built on McKesson s HorizonWP Patient Portal McKesson worked with Cancer Care Ontario to customize the portal and integrate it with EMR and scheduling systems Additional features were developed internally Disease and health management features Health tracking dashboard supports self management and promotes health Customized treatment plans are uploaded and patients can track their treatments Patients can track symptoms and side effects using a quantitative scale and compare results with norms Patient journals can also be created to record symptoms, treatments, and side effects Basic remote monitoring tools Patients can share input with clinicians who can advise when follow-ups are required Clinicians can check compliance with treatments (i.e., if a patient is taking their medications) based on patient input and or prescription refill requests Source:Cancer Care Ontario Press releases; Ontario Hospital Association Press releases

17 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 15 Financial services PHRs can also help patients manage payments and reimbursements. Financial tools provide summaries of benefits data, including amounts owed to insurers, benefits provided to date, and treatments that are eligible for reimbursement. Some vendors are also adding the capability to view and pay hospital bills online, potentially shrinking the accounts receivable cycle by making it more convenient for patients to pay their health bills. To date, third-party vendors have not produced many of these financial functions for healthcare providers (they focus on insurers instead). Therefore, most financial services features on PHRs are developed in-house. One of the most impressive examples is the U.S. Department of Veterans Affairs PHR system, which summarizes benefits and allows online payment (see Figure 11). On the insurer side, U.S. payers such as Blue Cross Blue Shield and Aetna have created PHRs that aggregate information from partner providers and post benefit summaries and bills for subscribers. Figure 11. Patients of the U.S. Department of Veterans Affairs use a PHR portal to manage benefits and payments Overview The Department of Veterans Affairs (VA) has been developing an integrated IT platform since the 1980s Highly integrated, linking clinics, physicians, and some external providers Largest integrated EHR/PHR platform in the world Architecture VistA is a completely proprietary solution that compiles and stores data from multiple disparate systems at local sites, using a physician portal called the Computerized Patient Record System Allows bidirectional real-time data flow between Department of Defense databases MyHealtheVet, a portal where patient data does not reside but through which it can be accessed and copied Features that enable patient-provider interaction Portal allows patients to check benefits status (not relevant for AHS) Financial systems update benefit status dynamically Users can receive and pay bills for care using the portal Financial systems update payment status Users can make co-payments online with credit cards Source:U.S. Department of Veterans Affairs Website

18 Engaging the Patient in Healthcare: an Overview of Personal Health Records Systems and Implications for Alberta 16 COMPARISON OF VENDORS

19 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 17 Today, the young PHR market is fragmented, with more than 200 vendors. Among these, there is a high degree of variability in both the nature and scope of product offerings. In this paper, we have focused on the top players in each PHR type as described previously. The vendors were selected based on scope of capabilities, size of user base, and applicability to AHS. Note: Some successful offerings are aimed squarely at U.S. healthcare payers (e.g., insurance companies) and are not relevant to Alberta and therefore have been excluded. Stand-alone PHRs Vendors offer a variety of methods to store portable health data, ranging from USB key chains to online portals. To date, the online portals have been the most successful, because they combine storage with ease and reliability of access. Some leading vendors of stand-alone PHRs include WebMD, RevolutionHealth, ICW LifeSensor, and NoMoreClipboard. WebMD and RevolutionHealth WebMD and RevolutionHealth have similar offerings that allow patients to create profiles based on their medical history, which they can choose to share with clinicians or keep private. Both services offer a number of features to engage patients in their own health, including decision-support, social networking, and disease/health management tools. However, neither provides any financial services or direct connection to provider systems. WebMD s distinctive feature is a health-tracking function that can identify patient risk factors for a range of diseases; RevolutionHealth has a networking tool that allows users to connect directly with one another in a manner similar to the social networking site Facebook. ICW LifeSensor and NoMoreClipboard These offering are limited to central repository functions for patients to store their health information. The vendors have focused on the basic element of a PHR: providing security and easy user interface. Overall, stand-alone PHRs have serious limitations, including requiring consumers to input and update their own data. Their primary benefit supporting patient mobility between health systems is not as compelling for AHS. Since patients do not often move between health systems, there is limited value in a stand-alone approach over one that can automatically populate patient records. Tethered PHRs This category is dominated by large healthcare IT vendors predominantly focused on EMR/ EHR solutions, such as Eclipsys Sunrise, Epic Systems MyChart, Cerner Health Connections, and McKesson HorizonWP. Their products all have similar capabilities and are marketed as add-ons to the EHR and other healthcare IT systems. In addition to providing patients with access to their health information, these modules include tools that enhance patient-provider interaction (e.g., e- scheduling, e-visits, pharmacy requests), disease/ health management (via dashboards), and financial services. They offer limited decision-support and social networking capabilities, but most vendors are partnering with services such as GoogleHealth and Microsoft HealthVault to broaden the range of services and make patient data portable beyond the provider s internal systems. Recently, Telus has acquired an application developed in an Ontario hospital called MYchart (not to be confused with Epic Systems MyChart). This solution was built as a layer above an EMR. It enables patient access to health records, messaging to providers and clinicians, and limited health-management trackers. However, it offers little ability to scale and interact with multiple systems. AHS could consider using a tethered PHR system for launching a PHR offering. By integrating directly with the healthcare system s IT infrastructure, a tethered system would allow patients to automatically populate and update their PHR files and access health-management tools. This makes a tethered system a more attractive option than a stand-alone system for AHS, but such a system would not provide the full array of options possible with an interconnected PHR system. Interconnected PHRs The key value of interconnected PHR systems is providing an open platform for application developers, enabling far greater customization and variation. At this point, the interconnected PHR market is just getting started. The major players so far are Google Health, Dossia, Microsoft Health Vault, and Telus HealthSpace (in Canada). Dossia was created by a consortium of employers that wanted an open-source repository to allow employees to manage their health. Dossia allows partner systems as well as patients to share information and provides simple developer tools. Using developer tools, customers can integrate with other systems and add new functions. The core Dossia offering consists of a tool to view and edit health information and a

20 Engaging the Patient in Healthcare: an Overview of Personal Health Record systems and Implications for Alberta 18 series of disease- and health-management tools. Health systems can use Dossia to automatically populate patient data files, pulling information from their records systems. To provide additional PHR features such as social networking and tools to improve patient interaction with providers, the health system would buy solutions from third-party vendors or create their own. Google Health offers a more comprehensive solution than Dossia. Like Dossia, it provides a repository function for patient information and a development environment to integrate external tools. However, it also uses a specialized search engine to provide patient decision-support functions. Google has disclosed plans to continue adding applications to Google Health by developing them in-house and partnering with other vendors. Microsoft HealthVault combines elements of Dossia and Google Health. Like Dossia, it has a limited user interface, relying on developers and partners to provide complementary capabilities and decisionsupport tools similar to Google Health (e.g., specialized search). Microsoft has focused its efforts on developing partnerships with tools and systems providers to build a portfolio of features, which has resulted in the availability of more applications and features than exist for Google Health. Microsoft also has developed relationships with medical device manufactures aimed at creating devices that automatically update a patient s PHR with the latest readings. Partners include Bayer in diabetes instruments, A&D for medical weight scales and blood pressure monitors, Home Diagnostic for blood glucose monitors, LifeScan for blood glucose meters and Nonin for finger-tip pulse oximeters. Microsoft has stated that it will stay away from building applications and rely on partners to enhance the platform and add features. Telus HealthSpace In May 2009, Telus announced its entry into the interconnected PHR market with Telus HealthSpace. This is simply a licensed version of Microsoft HealthVault, but data is stored in Canada, rather than in the U.S. Unlike the other players in the interconnected PHR market, which offer their solution for free, Telus is hoping to charge health systems to build onto HealthSpace. While today s interconnected PHRs offer few builtin features, they are still relevant for AHS. Since interconnected PHRs are quite flexible, AHS could build features as it develops its IT infrastructure (e.g., adding scheduling tools). Using the developer tools of an interconnected system would also make it relatively simple to modify the user interface to present a seamless view into different applications for patients. Finally, most PHRs are free; the only cost is developing the code that connects AHS s systems and the PHR databases. It is important to note, however, that for an organization such as AHS, an interconnected PHR (e.g., Google Health) would not necessarily replace a tethered PHR (e.g., Epic). The interconnected PHR would provide the user interface and access point for patients. A tethered PHR system would provide connection with other IT capabilities (e.g., secure physician ). Without such a coupled solution, AHS may limit its ability to offer features to improve patient-provider interaction without significant development. The most successful PHRs implemented at large health systems today have taken this approach (e.g., Kaiser Permanente, Cleveland Clinic, Beth Israel Deaconess Medical Center).

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