NORTHWESTERN UNIVERSITY MMI 403

Personal Health Record

PHRs must ultimately be a bi-directional tool
Jaimie Bubb, Kerry Heinecke, Michael Peterson, Joseph Ryan, Mary Lee Schneider

2010

Table of Contents
Introduction ...................................................................................................................... 3 Part I Definition of a PHR .............................................................................................. 3 Background/history and future mandate (2013) ...................................................... 3 How Theyre Delivered ............................................................................................... 4 Example of patient portal (provider-tethered) as PHR.............................................. 4 Example of Payer-tethered PHR ................................................................................ 4 Examples of Third-Party PHRs .................................................................................... 4 Part II Competitive analysis grid ................................................................................... 6 Table 1 Competitive analysis grid ........................................................................... 7 Part III Issues/Barriers to widespread adoption of PHRs ............................................ 8 The need for functionality beyond simple information capture ............................... 8 Ease of use/accessibility............................................................................................. 8 Bi-directional, real-time exchange of data (includes narrative, images, and test results) ................................................................................................................ 9 Data Ownership/Upkeep ........................................................................................... 9 Security Concerns..................................................................................................... 10 Part IV Standards efforts underway ........................................................................... 12 Governmental Efforts............................................................................................... 12 Industry Standards Group ........................................................................................ 14 Foundation/Think Tank Efforts ................................................................................ 14 Markle Foundation ......................................................................................... 14 Robert Wood Johnson Foundation ................................................................ 14 Hospital Networks/University/Third Party Technology Providers ................. 15 Part V Solutions ........................................................................................................... 16 Our Solution mymedinfo.com ............................................................................... 16 Table 2 Solutions to Barriers ................................................................................. 17 Part VI Benefits of solving issues ................................................................................ 18 Figure 1 Annual net value over 10-year roll-out period ....................................... 19 Benefits of a PHR ...................................................................................................... 20 Figure 2 Consumer survey of PHR benefits........................................................... 21 Part VII Conclusion ...................................................................................................... 23 References ...................................................................................................................... 24

Introduction Web-based PHRs must ultimately be a bi-directional tool (between EMRs and PHRs) for data exchange between patients and providers. PHRs have the potential to reduce healthcare delivery costs and improve patient outcomes, acting as a single source of medical information over an individuals lifetime. However, issues related to system accessibility, interoperability, data ownership, and confidentiality must be overcome. To address the above statement, this paper will focus on six goals. The first goal is to identify and describe what the definition of a PHR is (Section I). The second is to discuss the features and functionality of current PHRs (Section II). The third is to review the issues and barriers to widespread PHR adoption (Section III). The fourth is to assess the efforts behind standardization of PHRs (Section IV). The fifth is to propose a solution that encompasses the previous goals (Section V). And, the sixth is to discuss the benefits of having such a solution (Section VI). PHRs are not meant to replace or be the single source of medical information for an individual, but rather be a useful tool for empowering individuals to have access to their complete medical history, and empower them with links into resources that improve and inform their lives. Part I Definition of a PHR A personal health record (PHR) is a lifelong (longitudinal) health record that is created and maintained by an individual. The PHR helps patients stay involved in their medical care by keeping track of their health history. It is owned by the patient and contains data obtained from healthcare providers and the patient. It is not considered a legal health record and it is separate from the legal health record maintained by each healthcare provider the patient sees (AHIMA, 2006). The PHR is not the same thing as an EHR (electronic health record) or medical record. The patients medical record is the legal health record that is protected by HIPAA and is the property of the healthcare provider. The PHR is not a legal health record, is not protected by HIPAA, and is the property of the patient. It is a comprehensive compilation of health data from all of the providers the patient has encountered while a medical record contains only the data related to the encounters the patient had with that particular provider. The purpose of the PHR is for the patient to improve the quality of the healthcare they receive and their health (AHIMA, 2009). Background/history and future mandate (2013): The Centers for Medicare and Medicaid Services (CMS) defined meaningful use in their Notice of Proposed Rulemaking (NPRM) on December 30, 2009. The final rule is expected by summer 2010. The NPRM expects healthcare providers to comply with the criteria for meaningful use in phases. By 2011, in order to quality for stimulus funding through the American Recovery and Reinvestment Act (ARRA), the proposed rule states that hospitals and healthcare providers will be expected to provide patients with an electronic copy of their health information (includes problem list, allergies, medication list, discharge summary, procedures, diagnostic test results) when requested by their patients at least 80% of the time (AHIMA, 2010). This means that the healthcare 3

provider will need a way to exchange electronic data with patients. The personal health record (PHR) provides the means to accomplish this mandate. By 2013, hospitals will be expected to provide their patients with access to a PHR that has been updated in real time with their personal health data (Nomoreclipboard.com, 2009). How theyre delivered Four different PHR architectures are emerging: provider-tethered, payer-tethered, third party, and interoperable PHRs. Third-party or stand-alone PHRs do not initially connect to or integrate with electronic health records (EHRs). Provider-tethered and payertethered provide the patient with access to their specific organizations data. According to Kaelber & Pan (2008), interoperable PHRs offer the most value due to the ability to exchange data from all of the patients healthcare data regardless of the source. However, a fully interoperable PHR has not been developed as of yet. Much work needs to be done to create the resources and infrastructure for this to become viable in the future (Markle Foundation, 2008). Example of patient portal (provider-tethered) as PHR: Beth Israel Deaconess Medical Center offers its patients a web portal with access to their electronic medical record at https://www.patientsite.org/. It allows the patient to export their medical data into their Microsoft HealthVault or Google Health account. However, it does not allow importing of data from these two sources or from other healthcare providers. PatientSite, as most other provider-tethered PHRs, allows the patient to request medication refills, appointments, and referrals, as well as provides secure messaging with their provider. The healthcare provider or the patient provides all of the data. PatientSite does not allow exchanging of data with other health data sources. Example of Payer-tethered PHR: The Centers for Medicare and Medicaid Services (CMS) provides MyMedicare.gov (www.mymedicare.gov/) for its beneficiaries to have access to personalized information regarding benefits and services (CMS, 2009). Some of the information available through this PHR includes claims history, upcoming preventive services for which the patient might be eligible (mammogram, colonoscopy, etc.), deductible status. It also allows beneficiaries to develop a list of their favorite providers (e.g., doctors, nursing homes, clinics) and then write a review the contact and quality information on the providers listed. These PHRs contain information from that particular health plan or payer and do not allow exchange of health data with providers or other payers. Examples of Third-Party PHRs: A few vendors have surfaced as making the most advances in interoperability solutions for patients and providers: Google Health, Microsofts HealthVault, Dossia, and Indivo. With Google Healths PHR, patients can open an account and enter their own data as well as import medical records from pharmacies and various select healthcare providers 4

such as 1HealthRecord, Beth Israel Deaconness Medical Centers PatientSite, Cleveland Clinics MyChart. Google Health also offers drug interaction alerts (Google Inc, 2010). Microsofts HealthVault allows entering of patients personal health data and importing of medical data from various sources including pharmacies and medical devices such as blood glucose monitors and blood pressure devices. In addition, it allows hospitals to connect their web portals to HealthVault. In comparison to Google Health, HealthVault does not provide drug interaction decision support (Microsoft, 2010). Dossia is based on open source software, providing employers with a PHR to give to their employees. The main goal is to reduce healthcare costs while promoting wellness and chronic disease management. Dossia is promoted as a personally-controlled health record (PCHR), a subset of PHRs. Employees own and manage the data; the employer does not have access to the patients PHR. The PHR is populated with clinical data as well as claim and prescription data (Dossia, n.d.). Indivo is free, open source software, providing patients complete control over their PHR, which is also a personally-controlled health record. Indivos architecture allows for importing of data from diverse electronic medical record systems (Halamka, Mandl & Tang, 2008).

Part II Competitive analysis grid There are numerous PHRs in the market today. Table 1 below addresses the five most recognized PHRs in the US market. The table focuses on: How data is exchanged, communication between sources, types of functionality each has, portability, security, and who owns the data in the PHR. The PHRs are categorized into two groups: tethered (MyChart, Dossia, MyHealtheVet) and non-tethered (iHealth, HealthVault, Indivo) PHRs. If we look at the first group, we more or less see the same thing, except in the security aspect. MyHealtheVet is the only PHR that requires an individual to come to the VA and personally signup under supervision. The second group is comprised of hybrids that can be used as a tethered PHR or a non-tethered, personally controlled health record (PCHR). Between Googles and Microsofts solutions, the only difference that is worth mentioning is that Googles can perform drug utilization reviews and alert the patient to any adverse reactions. Indivo has several vendors that link to it to import medical device information. In addition, Indivo can also be integrated with multiple EMRs and sources for medical information.

Table 1: Competitive analysis grid

DATA EXCHANGE
Medications (Medco, CVS, etc) Medical Practices that have signed up Individual upkeep Medications (Aetna, CVS) Medical Practices that have signed up Individual upkeep

PHR

ELECTRONIC COMMUNICATION
Provider to Patient Patient to Provider Google Health Data API

TOOLS (FUNCTIONALITY)
Notices Drug Interactions Allergies Test Results Procedures Immunizations Conditions

PORTABILITY
Any Computer with Internet connection

SECURITY
Software Security Hardware Security (Firewalls, encryptions, backup systems)

WHO OWNS THE DATA?

You

Google Health
(Google, 2010)

Microsofts HealthVault
(Microsoft, 2010)

Dossia
(Dossia, 2010)

Interface with EMRs Vendor sources User can input data

MyChart
("Cleveland clinic," 2010)

Interface with single EMR User can input data Medical Devices User can input data Can be interfaced with multiple sources

Updated medical information can flow from provider to patient, and visversa. Manual process Interface with some medical devices Vendor communication, such as CVS patient portal. Provider to Patient Patient to Provider Manual/automatic data entry Vendor communication (insurance companies, pharmacies, EMRs) Only with single site EMR Provider to patient

Medications Immunizations Conditions Lab Results Able to link to some medical devices to feed data NO Drug Interaction ability
(Peters, Niebling, Green, Slimmer, & Schumacher, 2009)

Any Computer with Internet connection

Software Security Hardware Security (Firewalls, encryptions, backup systems)

You

Medications Healthstates Immunizations

Any Computer with Internet connection

Software Security Hardware Security (Firewalls, encryptions, backup systems)

You

Provider to Patient Patient to Provider Manual/automatic

Indivo (Childrens
Hospital Informatics Program, 2010)

MyHealtheVet
(Department of Veterans Affairs, 2008)

User can input data Untetherd

Provider to Patient Patient to Provider Manual/automatic data entry

Portions of your health record Request/cancel appointments Request Rx renewals Update Demographic information (Mail/email) Test Resukts Medications Allergies Immunizations Fam Hx Healthstate Share with multiple sources Genomix research link Able to include outside vendor software (open source) Access to your Chart Radiology Notes (not images) Medications Immunizations Conditions Access to some of your medical chart Secure communication w/providers

Any Computer with Internet connection

Software Security Hardware Security (Firewalls, encryptions, backup systems)

You

Any Computer with Internet connection

Secure storage, categorization and aggregation of health data. Single sign-on and standards-based dataaccess delegation. Unified user notification.

You

Any Computer with Internet connection

In person authentication process (Hoeksma, 2010) Software Security Hardware Security (Firewalls, encryptions, backup systems)

You

Part III Issues/barriers to widespread adoption of PHRs There are several issues and barriers to the widespread adoption of PHRs, the first of which relates to interoperability. Interoperability refers to exchanging data between different information systems. In the context of PHRs, it refers to exchanging data between the patients PHR and a providers electronic medical record, between the patients insurer and the PHR, and so forth. Provider- and payer-tethered PHRs do not promote interoperability because their data is limited to data from their individual organization. In order for PHRs to be interoperable, there must be content and exchange standards created and built into both PHRs and EHRs to allow for the transmission of data. Much work still needs to be done with standards development, especially in the areas of user authentication, identifying who/what is providing the information, mapping of data from clinicians medical language into patient-friendly information, and allowing the patient to control access to data. In addition, there must be a consensus on what core data set should be exchanged between the patient and provider (NCVHS, 2006). The need for functionality beyond simple information capture The NCVHS (2006) found that a critical success factor for the PHR is the provision of software tools that help consumers and patients participate in the management of their own health conditions. These tools include: decision support capabilities to assist patients in managing chronic diseases (diabetes, congestive heart failure, asthma, etc.); secure messaging between patient and provider; drug interaction alerts; reminders regarding preventive services such as mammograms, colonoscopy, pap test; manage health care benefits and claims; tracking of immunizations. Ease of use/accessibility The complexities of the system as well as the vocabulary are basic barriers to a patient utilizing the system. The varying levels of general literacy and health literacy can make it difficult for some patients to use a PHR. For example, individuals may have little interest in understanding health-related terminologies or test results until they develop a chronic or life-threatening illness. Typically, such individuals then become more engaged in their health and attempt to understand a wider range of knowledge and information related to their disease processes (Ash, et al., 2005). Research has shown that most Americans are unaware of the PHR concept; furthermore, low-income elderly individuals from racial and ethnic minority groups are even less likely than other groups to have heard of a PHR. The studies suggests there are three primary barriers have limited the diffusion of this technological advance to underserved population groups: (1) the digital divide, (2) low health literacy, and (3) cultural differences (Lorenzo & Pfleiderer, 2007). Computer access is a requirement to use an electronic personal health record system. Until recently, high speed internet was not widely available and systems could not

communicate with each other. New systems must be able to read records on older media and operating systems (Doctors Smart Card, 2008). Bi-directional, real-time exchange of data (includes narrative, images, and test results) Member-entered data, or for that matter, any manually-entered data regardless of its source, can be suspect. Everyone makes mistakes. Unreliable health data can lead to incorrect diagnoses or treatments, essentially countering the intended benefits of a PHR. The preferred method for providing objective data is the automated uploading of test results and biometric information from personal health monitoring devices directly to the PHR. While remote monitoring devices, such as glucose meters, pedometers, spirometers, and blood pressure cuffs, measure and store a wealth of biometric information, they present significant practical and economical challenges to transferring this data to the PHR. This is true primarily because of the plethora of devices and manufacturers in the market; all utilize their own proprietary data upload technologies (Imetrikus, Inc., 2007). Currently in the US there is no standard for different information technology systems and software applications to communicate, exchange data accurately, effectively, and consistently, and use the information that has been exchanged. The four levels of data structuring at which health care data exchange can take place are: Level I: Nonelectronic data: such Paper, mail, and phone call. Level II: Machine transportable data such Fax, email, for unindexed documents. Level III: Machine organizable data such as HL7 messages and indexed (labeled) documents, images, and objects. Level IV: Machine interpretable data of structured messages and standardized content so that no further interpretation or translation is required (e.g., automated transfer from an external lab of coded results into a providers EHR) (Doctors Smart Card, 2008). Information exchange components are functions within a PHR system that allow patients to engage in two-way data exchange transactions with others regarding their health or healthcare, such as e-visits. There are a nearly limitless cadre of functions that will empower patients to take control of their health and healthcare (Kaelber et. al, 2008). Data ownership/upkeep Beyond an individual's personal data, PHRs may include relevant information about family members, caregivers, and home and work environments that are important to the individual's health. A PHR might, for example, interact with EHRs to obtain information about contagious diseases detected among family members, allowing a provider to factor a sibling's recent diagnosis of strep throat into the differential diagnosis of fever and coryza in the index individual. A related concern is how to allow individuals to specify which of their own data they will allow to be shared with other health information systems (Ash, et al., 2005).

The overwhelming amount of information, some being clinically irrelevant might make it hard for the provider to review. As an example, while providers routinely inspect and use the most recent blood glucose measurements in a diabetic patients logbook, reviewing complete documentation of a patients daily activities, including detailed diet, exercise patterns, sleep patterns, and transient symptoms to find one crucial item of information becomes problematic (Ash, et al., 2005). Patients who discover mistakes in their health records can delete information, add notes, or ask providers to correct problems. Dr. Todd Taylor, a former emergency room doctor who now works for Microsoft Health Solutions group, which makes the personal health record Microsoft HealthVault, said patients "need to take an active role in managing their health data," preferably by reviewing them with a medical professional (Wangness, 2009). Medical records, such as physician orders, exam and test reports are legal documents, which must be kept in unaltered form and authenticated by the creator. According to HIPAA, the patient owns the information within the record and has a right to view the originals, and to obtain copies under law (Doctors Smart Card, 2008). Security Concerns The security concerns of a PHR system are complex. If consumers are going to use PHRs they should have a choice concerning the use of their personal information. PHR vendors are not a covered entity under the Health Insurance Portability and Accountability Act of 1996; therefore, PHRs are not covered by HIPAA (HIPAA). Its understandable, then, that consumers would have a legitimate concern about who could breach the security of their health care record. On February 17th 2009, President Obama signed into law the Health Information Technology for Economic and Clinical Health Act (HITECH). This act was to support wider use of health information technology and to ensure patient privacy continues to be protected. The act extends four key requirements under the 1996 (HIPAA) Act, which are discussed next. The extensions increase privacy and security rules to EHRs and PHR vendors (CFR, 2009). Breach notification: PHR vendors are required to notify the FTC and all individuals whose information is the subject of a breach no later than 60 days after discovery. The FTC must then notify the Department of Health and Human Services if the breach involves more than 500 people. Individual Right of Electronic Access: PHRs now must provide an individual or someone designated by the individual an electronic copy of his or her EHR within 30 days of such request.

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Accounting of Disclosures: PHR vendors must provide a list of the organizations or individuals to which the vendor has disclosed the individuals information during the previous three years. Study on PHRs: Requires HHS and the FTC to conduct a study on federal privacy and security requirements for PHR vendors. Consumers should be aware of standard security precautions provided by each PHR vendor. Each vendor should provide consumers with a statement of terms and conditions of use. All PHR vendors systems should have standard security authentication software. PHR systems should include functionality to control access to the consumers information. If consumers do not feel that their personal information is safe, they will not embrace the PHR technology. The government has stepped up their efforts to protect the consumers rights and privacy. All consumers should be vigilant when it comes to security and they should be assured that the PHR is a confidential and secure system.

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IV: Standards efforts underway Technical and legal barriers to effective bi-directional exchange of data between EMRs and PHRs are being addressed by at least four groups of interested parties: 1. The U.S. Government, through various governmental and quasi-governmental agencies 2. Industry standards groups, in conjunction with governmental efforts. 3. Healthcare-specific private foundations (assume more of an influencing role) 4. Individual hospital networks, in conjunction with third party technology providers Governmental Efforts In 1998, the National Library of Medicine announced a three-phase Next Generation of Internet (NGI) research program to develop innovative medical projects that demonstrate the application and use of NGI capabilities. The precursor to the previously mentioned Indivo system was one such research effort funded by this initiative (National Library of Medicine, 2010). According to their charter, research efforts and funding were focused on using the internet to improve outcomes in the following areas: Quality of service Medical data privacy and security Nomadic computing Network management Infrastructure technology for scientific collaboration In February of 2009, the American Recovery and Reinvestment Act (ARRA) was passed and $19 billion of stimulus money earmarked for accelerating the adoption of electronic medical records. Titled the Health Information Technology Economic and Clinical Health Act (HITECH), its focus is as follows (HHS, 2010): The Health Information Technology for Economic and Clinical Health (HITECH) Act seeks to improve American health care delivery and patient care through an unprecedented investment in health information technology. The provisions of the HITECH Act are specifically designed to work together to provide the necessary assistance and technical support to providers, enable coordination and alignment within and among states, establish connectivity to the public health community in case of emergencies, and assure the workforce is properly trained and equipped to be meaningful users of EHRs. Combined these programs build the foundation for every American to benefit from an electronic health record, as part of a modernized, interconnected, and vastly improved system of care delivery. While the Office of the National Coordinator for Health Information Technology (ONC) was created in 2004 to coordinate public and private efforts in this space, its role was 12

elevated after passing of the HITECH Act in 2009. The ONC falls under the jurisdiction of the Department of Health and Human Services (HHS). According to its charter, the ONC is responsible for (HHS, 2010): Promoting development of a nationwide HIT infrastructure that allows for electronic use and exchange of information that: o Ensures secure and protected patient health information o Improves health care quality o Reduces health care costs o Informs medical decisions at the time/place of care o Includes meaningful public input in infrastructure development o Improves coordination of care and information among hospitals, labs, physicians, etc. o Improves public health activities and facilitates early identification/rapid response to public health emergencies o Facilitates health and clinical research o Promotes early detection, prevention, and management of chronic diseases o Promotes a more effective marketplace o Improves efforts to reduce health disparities Providing leadership in the development, recognition, and implementation of standards and the certification of HIT products; Health IT policy coordination; Strategic planning for HIT adoption and health information exchange; and Establishing governance for the Nationwide Health Information Network. In addition, under the ONC, several HIT Policy Committee workgroups have been formed. They include (HHS, 2010): Meaningful Use: The Meaningful Use Workgroup will make recommendations to the HIT Policy Committee on how to define meaningful use in the short- and longterm; the ways in which electronic health records (EHRs) can support meaningful use; and how providers can demonstrate meaningful use. Certification/Adoption: The Certification/Adoption Workgroup will make recommendations to the HIT Policy Committee on issues related to the adoption of certified electronic health records that support meaningful use, including issues related to certification, health information extension centers and workforce training. Information Exchange: The Information Exchange Workgroup will make recommendations to the HIT Policy Committee on policies, guidance governance, sustainability, architectural, and implementation approaches to enable the exchange of health information and increase capacity for health information exchange over time. Nationwide Health Information Network (NHIN): The NHIN Workgroup will create a set of recommendations for a policy and technical framework that allows the internet to be used for the secure and standards-based exchange of health information in a way that is both open to all and fosters innovation. 13

Strategic Planning: The Strategic Planning Workgroup will advise the National Coordinator on strategic policy framework. Privacy & Security Policy: The Privacy & Security Policy Workgroup will address Privacy and Security in the health IT policy context. At a very high level, the new Privacy & Security Policy Workgroup will define and address the policy challenges related to privacy and security; discuss a set of principles around privacy and security; and various methods of ensuring privacy and security. Committees are comprised of participants from universities, think tanks, insurance companies, EMR and PHR companies, special interest groups (ex: AARP), and technology companies (ex: Microsoft). Industry Standards Groups In addition to the alphabet soup of government agencies involved with HIT standards, there are several industry groups whose focus is to establish technical and legal standards for PHR information exchange. Working under the direction of the ONC, the National EHealth Collaborative (NeHC), is focused on creating standards for information exchange of secure healthcare data. Its membership is comprised of healthcare providers, universities, and public policy officials who in turn staff/support the work in process in the ONC Policy Committees mentioned above (NEHC, 2010). In addition, the America National Standards Group (ANSI), under the direction of their Healthcare Information Technology Standards Panel, engages with both public and private efforts to develop interoperability standards in support of a national healthcare data exchange platform (ANSI, 2010). Similarly, a separate organization called the Healthcare Information Technology Standards Panel (HITSP) seeks to corral similar efforts. It appears however that this panel may be disbanded or consolidate into the ONC as funding from HHS has only been extended through the end of April 2010 (HITSP, 2010). Foundation/Think Tank Efforts Markle Foundation The Markle Foundation advises government agencies and solicits public feedback. Markle also proposes a set of practices that, when taken together, encourage appropriate handling of personal health information as it flows to and from personal health records (PHRs) and similar applications or supporting services (Markle Foundation, 2010). Robert Wood Johnson Foundation The Robert Wood Johnson Foundation has among its seven key Program Areas a topic entitled Pioneers. According to their criteria, pioneers support innovators whose bold ideas push beyond conventional thinking to explore solutions at the cutting edge of health and health care. (Robert Wood Johnson Foundation, 2010). Several potential 14

case studies on the benefits of a PHR are contained within their literature. They support technology companies and hospitals that seek to empower individuals with tools to improve their health. Hospital Networks/University/Third Party Technology Providers In addition to the above, there are several hospital networks/university/technology players who have developed their own solutions to address the technical and legal issues that create barriers to effective PHR utilization. These companies are noted in prior sections of our paper, and include: Department of Veteran Affairs: MyHealtheVet, with over 25 million users Epic: the patient portal MyChart, with 50 million users. Used by the Cleveland Clinic. Beth Israel Deaconess Medical Center (BIDMC): PatientSite Childrens Hospital Informatics Program (CHIP) at Childrens Hospital Boston: Indivo In the case of these PHRs, each of the entities above has used combinations of both technology and business rules to address challenges. For example, to address identity validation concerns, the VA mandates individuals present in person at a facility to open an account on the system. Relative to posting test results, at BIDMC, they developed business rules that said all test results permissible by law would be made available on the PatientSite, but that certain test results, such as scans to stage cancer progression, would be embargoed one week to enable a physician to evaluate/communicate results (Halamka, Mandl & Tang, 2008). With the exception of the Indivo solution, which is more a platform for sharing information across several provider entities, the above PHRs are primarily examples of provider-tethered PHRs. The Indivo solution is innovative in that in its next stage of evolution, it is enabling third party solutions such as Dossia to reside on top of its core architecture, and allowing a secure two way exchange of data between the underpinning provider EMRs, other third parties information sources (e.g., pharmacies, insurance companies, communities of interest). Several large corporations (HP, Intel) are offering (and subsidizing) this solution for employees (Dossia, 2010).

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V. Solutions Our Solution: www.mymedinfo.com We believe the only practical way to resolving the issue of bi-directional exchange of real time data is through the creation of a third party web solution that can query prequalified healthcare databases for specific user controlled information, and in turn port that information real time into a patient-accessed, patient-controlled PHR. This solution differs from offerings today from Microsoft and Google in that it provides real time data exchange with leading EMR systems, and accommodates (yet differentiates between) provider-entered data and patient-entered data. We are calling our solution mymedinfo.com. On the user side, an individual would pay an annual subscription fee for this service. We envision a Software as a Service (SaaS) business model whereby all the user needs to access the information is access to the webthere is no proprietary hardware or software necessary to access the information. Information is hosted on mymedinfo.coms secure servers, with full data back-up and disaster recovery capabilities in place. In our solution, mymedinfo.com would partner with the major EMR and healthcare provider networks to create secure data interchange protocols. It is up to the individual provider networks to ensure that subscribers are valid system users, and have consented to making their information available through this third party service. It is also up to the providers to set their business rules for the features/functionality that will be exposed to the subscriber. For example, some provider networks may want subscribers to be able to view full test results; others may wish to limit the types of test results (as well as details) viewable. Once business rules are set and validation/consent procedures in place, mymedinfo.com would employ a Services Oriented Architecture (SOA) to query the provider EMRs and exchange information upon log-in to the PHR. In addition, mymedinfo.com could extend functionality to include pharmacy links for medication refills, links to emessaging/calendaring, insurance statements, and key select communities of interest or health resources. Similar validation/consent processes must be in place with these providers before functionality can be exposed to the end user. As subscribers log in for the first time, they will see a pull down menu of available provider networks. In some cases, the user may need access to more than one network given that their care may have been or may be delivered in the future across several different physicians or facilities. Given that a PHR is meant to be a longitudinal record of an individuals health information over the entire course of their lifetime, this ability to aggregate data across many sources is a critical component of our solution. As stipulated above, we are relying on the provider networks to ensure validation/consent of the end user to information contained within their information systems.

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Table 2 below shows proposed approaches for overcoming barriers that exist to bidirectional PHRs today, as well highlights some of the features and functionality we envision as part of mymedinfo.com.
Table 2: Solutions to Barriers
Problem Solution

Accessibility/portability

Web interface into third party data aggregator SaaS business model. Information is stored on third party database, individuals pay subscription for access. Accessible through any computer, smartphone. Data mapping (e.g. classification codes) needs to be done between EMR and PHR to ensure clean translation Patient-selected data is pulled from all provider and insurance databases at each log-in Accommodates patient-provided data, and differentiates (through highlighting) provider-entered data and patient-entered data. Accepts device input data (ex: glucose meters) Hosted on secure third party site, compliant with all HIPAA and PCI compliance/auditing/consent management requirements. SSL, encryption, HL7 messaging requirements View test results with 1 day for normal results, 3 days for abnormal Ability to graph test results over time Ability to request and receive archived digital images and medical records through secure log-in E-messaging and calendaring enabled between patient and physician Integrated with insurance payer. Ability to see EOBs, pay bills. Ability to view/reorder medication, receive adverse drug event alerts. Ability to link to communities of interest (i.e. diabetes care) or other health resources for chronic disease management Individual must validate identify/give consent to each data source owner (e.g. provider, insurance company, pharmacy) Individual must give consent for PHR access for anyone other than self.

Data input sources

Security

Functionality/business rules

Access/rights/confidentiality

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VI: Benefits of solving issues: Clearly the barriers have been identified, and significant efforts are underway to address those barriers. The question remains what is the true economic value of a PHR? The economic benefits of having a PHR are difficult to quantify. Different PHR models produce different economic scenarios. The four models which include providertethered, payer-tethered, third-party and interoperable each have specific cost and benefits. The primary economic benefits from using a PHR are derived from a reduction in administrative costs and a reduction in direct health care cost. The economic costs can be divided into two primary components: Infrastructure cost and application costs. To assess the net value of a PHR you must consider all the factors. Quantitative and qualitative benefits are difficult to measure and there is considerable debate over the economics of Public Health Records. The infrastructure costs are the cost for facilitating information exchange. They primarily are data centers, authentication, connectivity, interfaces, support, record matching, and data storage. There are acquisition costs and annual cost for this component. The application costs are the cost associated with teaching patients and providers how to use the system. A PHR application is any function within a PHR that allows patients to learn about, monitor, and manage their own healthcare and the information exchange with others regarding their health or wellbeing (Services, 2006). Reductions in administrative cost can be achieved by: E-visits, sharing test results, online appointment scheduling, pre-encounter questionnaires. Many of the tasks which required clerical personnel are now handled in the PHR. Reducing the direct health care cost is achieved by reducing the number of hospital or office visits required by each patient. Remote monitoring, sharing of medication lists, online education all are methods which improve healthcare and reduce the cost of healthcare. The US Department of Health and Human services published a report in February 2006 (Services, 2006). This report compared the cost and benefits of the four PHR models. The reports show that three of the four models show net value approximately 4 years after initiation. PHR analysis shows that all forms of PHRs have initial net negative value. However, at the end of ten years steady state annual net value ranging from 13 billion to -29 billion. Interoperable PHRs provide the most value, followed by third-party and payer-tethered PHRs. Provider-tethered PHRs constantly demonstrate negative net value. This information supports the positive economic return of PHRs as depicted in Figure 1 below (Kaebler & Pan, 2008).

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Figure 1: Annual net value over 10-year roll-out period

Kaebler & Pan, 2008, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655982/

PHRs have the potential to dramatically improve efficiencies in our healthcare system. The numbers of users estimated to make a single installation of a PHR net positive are an important issue to consider. The Center for Information Technology Leadership estimated approximately 47 million users for a third-party PHR, and 50,000-60,000users for payer-tethered and interoperable PHRs (CITL, 2008). Patients with chronic diseases will track their diseases in conjunction with providers. Remote monitoring of CHF patients weight and blood pressure will reduce rehospitalizations and save an estimated six billion dollars annually (Tang, 2006). By providing earlier interventions when a patient encounters a deviation or a problem the patient can remain at home and avoid costly office visits or even hospitalizations. Collaborative disease tracking has great potential to lower communication barriers between patients and caregivers. Improved communication will make it easier for patients and caregivers to ask questions, set-up appointments, and report problems. On-line smoking cessation management through interactive on-line counseling is estimated to save one billion dollars annually (CITL, 2005).

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It is also important to point out that the large provider organizations would realize greater value than smaller practices. For the system to work there would need to be redistribution of the economic gains to the smaller providers. Patients with chronic diseases will track their diseases in conjunction with providers. Remote monitoring of CHF patients weight and blood pressure will reduce rehospitalizations and save an estimated six billion dollars annually (Tang, 2006). By providing earlier interventions when a patient encounters a deviation or a problem, the patient can remain at home and avoid costly office visits or even hospitalizations. Collaborative disease tracking has great potential to lower communication barriers between patients and caregivers. Improved communication will make it easier for patients and caregivers to ask questions, set-up appointments, and report problems. Benefits of a PHR PHR systems create many benefits; the beneficiaries are individuals, providers, payers, employers, and society in general. Consumers and patients who have used PHR systems express strong support for their continued expansion. There are a greater number of the Americans who are not familiar with PHR systems and are interested in their potential benefits. President Obama announced as part of his economic stimulus plan, he wanted all Americans to have electronic healthcare records in the next five years. He said in his speech Electronic Health Care Records will not only save millions through cutting waste and eliminating the need for repeat medical test, but they will also save lives by reducing medical errors. PHRs and electronic health records are directly related. The PHR is just the culmination of many electronic health records in one database. The benefits are the potential market drivers of the PHR. Benefits for individual consumers Markle Foundation (2008) reported recent survey results that indicate that four out of five US adults believe that a PHR would benefit healthcare. The survey ranked what they perceived as the benefits of a PHR (see Figure 2).

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Figure 2: Consumer survey of PHR benefits

http://www.connectingforhealth.org/resources/phwg_survey_6.5.03.pdf

Individual consumers have many benefits. The PHR will bring continuity of care across time and strengthens two-way communication with their providers. PHRs support realtime healthcare decisions. The PHR will improve documentation and increase the supporting responsibility for care. The individual consumer will have greater access to their providers; they can connect via the e-visit and ask questions or give information about their health. The consumer will seek out information about wellness activities and play a more active role in health promotion and disease prevention. Consumers will be able to access their own records, they can verify information, and they will manage insurance benefits and claims. The consumer will manage their appointments, schedule specific tests, and get reminders to refill their prescriptions. Ultimately this will improve their own health status through better compliance and a greater emphasis on disease prevention and wellness activities. Healthcare providers will benefit from PHR systems by having improved access to data from other providers. The patient themselves becomes a valued provider of

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information. Providers will have better documentation and can provide better services to their patients. Patients are provided convenient access to specific information and services. They can share lab results or communicate a prescription refill to their pharmacy. Doctors will have access to the patients prescription records, and can avoid dangerous drug interactions and medication allergies. The PHR will become the primary tool for healthcare and patient services. Payers will benefit directly with better customer service. The PHR will provide information about every transaction and will facilitate more efficient information exchange. The PHR will promote portability of patient information across the plan. The PHR coordinates wellness and preventative care with the providers. Payers will have reductions in cost, by eliminating unneeded replication of test, and the increased emphasis on preventative care. Payers will emphasize the need for improved information sharing and the educational benefits to their beneficiaries. Society will be the ultimate beneficiaries of the PHR. Public health benefits will include: Early detection of infectious disease outbreaks, improved tracking of chronic disease management, strengthening of health promotion and disease prevention, improved health of the general population and expanded health education opportunities. The Department of Health and Human Services cited six positive outcomes with the implementation of widespread PHR: Improved healthcare Prevention of medical errors Reduction in healthcare cost Increased administrative efficiencies Decreased paperwork Expanded access to affordable healthcare PHRs will empower patients and improve the quality of care. Public policy and consumer acceptance will clearly affected the pace of PHR implementation and the realization of the value of these systems (CITL, 2008).

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VII: Conclusion In conclusion, the real value of PHRs lies in their in their ability to aggregate data real time (bi-directionally, between patient and provider) across multiple healthcare data repositories. The key to unlocking their value will be to address both the security and interoperability data exchange standards. While many of these challenges are being addressed by various governmental and quasi-governmental entities today, real innovators in the space (BIDMC, CHIP) are finding ways to resolve these issues in the short term, and create value for their collective patients. PHRs are not meant to replace or be the single source of medical information for an individual, but rather be a useful tool for empowering individuals to have access to their complete medical history, and empower them with links into resources that improve and inform their lives.

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REFERENCES
AHIMA Personal Health Record Practice Council. (2006, November-December). Helping consumers select PHRs: Questions and considerations for navigating an emerging market. Journal of AHIMA, 77 (10), 50-56. American Health Information Management Association (AHIMA). (2009). What is a PHR? Retrieved from http://www.myphr.com/index.php/start_a_phr/what_is_a_phr/ American Health Information Management Association (AHIMA). (2010). Meaningful use: CMS proposed rule overview. Retrieved from http://ahima.org/arra/documents/MeaningfulUseOverviewfin100106fin.pdf American National Standards Institute. (2010). Healthcare information technology standards panel. Retrieved from http://www.ansi.org/standards_activities/standards_boards_panels/hisb/hitsp.aspx?me nuid=3 Ash, J., Bates, D., Sands, D., & Tang, P. (2005). Personal health records: Definitions, benefits, and strategies for overcoming barriers to adoption. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1447551/ Centers for Medicare and Medicaid Services (CMS). (2009). MyMedicare. Retrieved from http://www.mymedicare.gov/ Childrens Hospital Informatics Program. (2010). Indivo: the personally controlled health record. Retrieved from http://indivohealth.org/ Center for Information Technology Leadership (CITL). (2005). The Value of Personal Health Records ISBN:978-0-9800697-4-7. Health Information and Management Society. Center for Information Technology Leadership (CITL). (2008). The Latest New Frontier in Healthcare IT. Woonteiler,Johnson. Kaelber, D. & Pan, E. C. (2008). The value of personal health record (PHR) systems. American Medical Informatics Association. 2008 Symposium Proceedings Page 343. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655982/ Cleveland clinic. (2010, March 11). Retrieved from https://mychart.clevelandclinic.org/default.asp Department of Health and Human Services (HHS). (2010). Retrieved from http://healthit.hhs.gov/portal/server.pt?open=512&objID=1487&parentname=Commu nityPage&parentid=28&mode=2&in_hi_userid=11113&cached=true 24

Department of Veterans Affairs. (2008, February 11). My Healthevet pilot, your personal health journal, frequently asked questions. Retrieved from http://indivohealth.org/ Doctors Smart Card. (2008). Barriers to electronic records. Retrieved from http://www.doctorssmartcard.com/dscard6.htm Dossia. (n.d.). Dossia Your personally controlled health record. Retrieved from http://www.dossia.org/ Frost & Sullivan. (2007). Personal health records. Retrieved from http://www.corp.att.com/healthcare/docs/PHR.pdf Google Inc. (2010). Google Health: Import medical records. Retrieved from https://health.google.com/health/directory?cat=importrecords Google, Inc. (2010). Google Health data api. Retrieved from http://code.google.com/apis/health/ Halamka, J.D., Mandl, K.D., & Tang, P.C. (2008). Early experiences with personal health records. Journal of the American Informatics Association, 15 (1), 1-7. Healthcare Information Technology Standards Panel. (2010) Retrieved from http://www.hitsp.org/ Hoeksma, J. (2010, March 01). Boomers lead on personal health records. Retrieved from http://ehealtheurope.net/news/5688/boomers_lead_on_personal Imetrikus, Inc. (2007). Using real-time data to turn personal health records into proactive health management tools: Low-cost, high-value telehealth empowers health plan members and their care teams. Retrieved from http://www.imetrikus.com/pdfs/MCconnectwhitepaper.pdf Kaelber, D. & Pan, E. C. (2008). The value of personal health record (PHR) systems. AMIA Annual Symposium Proceedings Archive, 2008, 343347. Kaelber, D., Middleton, B., Pan, E., & Vincent, A. (2008). A patient-centric taxonomy for personal health records (PHRs). Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656090/ Lorenzo, M., & Pfleiderer, J. (2007). New brief from mathematica looks at designing personal health records for underserved populations. Retrieved from http://www.mathematica-mpr.com/newsroom/releases/2007/pershealthrec0407.asp

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Markle Foundation. (2008). Common Framework for Networked Personal Health Information. Retrieved from http://www.connectingforhealth.org/phti/#guide Microsoft, Inc. (2010). Applications directory Health Vault. Retrieved from http://www.healthvault.com/personal/websites.html?rmproc=true Microsoft, Inc. (2010). Welcome to microsoft healthvault. Retrieved from http://www.healthvault.com/Personal/index.html National Committee on Vital and Health Statistics (NCVHS). (2006). Personal health records and personal health record systems. Retrieved from http://www.ncvhs.hhs.gov/0602nhiirpt.pdf National eHealth Collaborative. (2010). Retrieved from http://www.nationalehealth.org/ National Library of Medicine. (2010). Retrieved from http://www.nlm.nih.gov/research/ngiinit.html Nomoreclipboard.com. (2009). Online health history for hospitals and health systems. Retrieved from http://www.nomoreclipboard.com/hospitals/hospitals-nomoreclipboard Peters, K., Niebling, M., Green, T., Slimmer, C., & Schumacher, R. (2009). Consumers compare online personal health record (phr) applications. Google Health vs. Microsoft HealthVault. Retrieved from http://www.usercentric.com/publications/2009/02/02/google-health-vs-microsofthealthvault-consumers-compare-online-personal-hea Services, U. D. (2006). Personal Health Records (A Report and Reccomendation from the National Commitee on Vital and Health Statistics). pg.50-51. Purcell, V. Personal Health Record Marketplace: The Current Landscape. Retrieved from http://www.myhealtharchive.com/m/pages/PHR Tang, P. (2006). Personal Health Records, Definitions, Benefets and Strategies . JAMIA:13 M2025 doi10.1197 , 121-126. The Markle Foundation. (2010) Retrieved from http://www.connectingforhealth.org/phti/index.html#guide The Robert Wood Johnson Foundation. (2010). Retrieved from http://www.rwjf.org/pr/product.jsp?id=50308 Wangness, Lisa. (2009). Electronic Health Record Raise Doubt: Google service's inaccuracies may hold wide lesson. Retrieved from

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http://www.boston.com/news/nation/washington/articles/2009/04/13/electronic_heal th_records_raise_doubt/cpage=2

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