A Framework and Approach for Assessing the

A Framework and Approach for Assessing the Value of Personal Health Records (PHRs) Douglas Johnston1, David Kaelber, MD, PhD1,3, Eric C Pan, MD, MSc1,3, Davis Bu, MD, MS1,3, Sapna Shah, MS1, Julie M. Hook, MA, MPH1, and Blackford Middleton MD, MPH, MSc1,2,3 1 Center for Information Technology Leadership (CITL), Partners HealthCare System, 2 Clinical Informatics Research and Development, Partners HealthCare System and 3 Harvard Medical School, Boston, MA will likely be able to draw upon existing evidence on the costs, benefits and other impacts from technologies in these domains. However, a comprehensive framework and proven methodologies are needed to structure the identification and application of this evidence to assess PHR value. In this paper, we propose such a preliminary framework, based upon PHR functions, and outline an approach to assessing the value of PHRs using this framework. The approach and associated methodologies have been applied successfully in the assessment of other health information technologies including, information technology enabled diabetes management2,3, ambulatory computerized physician order entry4, and healthcare information exchange and interoperability5.

Abstract Personal Health Records (PHRs) are a rapidly expanding area of medical informatics due to the belief that they may improve health care delivery and control costs of care. The PHRs in use or in development today support a myriad of different functions, and consequently offer different value propositions. A comprehensive value analysis of PHRs has never been conducted; such analysis is needed to identify those PHR functions that yield the greatest value to PHR stakeholders. Here we present a framework that could serve as a foundation for determining the value of PHR functions and thereby help optimize PHR development. While the value framework is specific to the domain of PHRs, the authors have successfully applied the associated evaluation methodology in assessing other health care information technologies.

Sources of PHR Value Research suggests that the value of PHR tools may come from three general areas – reduction in direct medical costs, improvement in health care efficiency, and enhanced quality of care6. The cost and benefits, and therefore the ultimate value of PHRs, will likely accrue differently to the various PHR stakeholders – patients, payers, providers, and employers.

Introduction PHRs are defined as “a set of computer-based tools that allow people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it”1 . PHRs are not only electronic repositories of health information controlled or accessed by patients. They also consist of tools that span across several domains in health care and medical informatics: electronic health records, computerized decision support, heath information exchange, disease management and telehealth. For instance, in addition to electronic records, PHR tools include remote monitoring, patient self-management technologies, teleconsultations and electronic visits. Accordingly, in assessing the potential value of PHRs, researchers Data from PHR to data source

We hypothesize that PHR value is determined by the number and types of functions supported by the PHR system (Figure 1): generally, the more functions, the greater the value. However, not all functions will produce the same types or amounts of value to each stakeholder. Determining which functions provide the greatest value for specific stakeholders will have a large impact on PHR development in terms of who funds this development, what functions are supported Payers

E.g. PHR provides complete medication history to pharmacy

Pharmacy

Providers/ EMR PHRs Data from data source to PHR

Increase size of central hub (# of PHR functions) enhances value

(Patient Controlled)

Lab

Devices

AMIA 2007 SymposiumRadiology Proceedings Page - 374 Figure 1. Hub and spoke PHR system with the patient controlled PHR at the center.

and who pays for these systems. PHR Function Framework We envision a preliminary framework of PHRs to include the following six categories:

Personal Health Journal – functions that allow patients to record and maintain their own personal health information (e.g. online medical record or a portable Universal Serial Bus or “USB” drive)

Patient-Provider Communication – functions that allow patients and providers to better communicate and interact with one another (e.g. email, secure messaging, online scheduling)

Personal Health Monitoring and Management – functions that allow patients to monitor and manage their own health status outside of traditional care settings (e.g. PHR-assisted blood glucose monitoring)

Personal Health Advocate – functions that allow patients to better advocate for their own and for other’s health care (e.g. health care proxies)

Personal Health Reminders – functions that allow patients to improve adherence to care plans (e.g. email reminders for medication adherence)

Personal Decision Support – functions that allow patients to make more informed health care decisions (e.g. web-based disease risk and treatment assessment tools)

Table 1 contains a detailed list of envisioned functions and the likely value provided.

Table 1. Envisioned PHR functions and their potential values. PHR Function

Type of PHR Value

Medication refills

Functions that allow patients and providers to better communicate and interact with one another Improved scheduling efficiency Information gathering pre-visit to facilitate clinical encounter, care monitoring, improved feedback to provider Improved drug refill efficiency

Secure messaging

Improved access to care

Verification of patient information

Improved efficiency and quality

Lab result viewing

Improved awareness of lab results Improved awareness of provider instructions, care management plans Improved awareness of radiology results Functions that allow patients to better advocate for their own and for other’s health care (as health care proxies) Improved communication with patient proxies and care team

Patient-Provider Communication Appointment scheduling Care management questionnaires

Provider visit summary note viewing Radiology results viewing Personal Health Advocate

Communication with patient proxies

Example of PHR Value

Less staff labor time, improved clinic throughput Pre-visit questionnaires can facilitate clinical encounters to improve efficiency and quality; Post-visit data gathering may be used to assess quality or monitor care processes Improved medication adherence, more efficient refill requests because staff needs to be less involved in this process Decrease in face-to-face appointments for some issues (e.g. simple cold) that could be addressed by secure messaging instead Increased clinical efficiency from more complete and accurate record based upon verified patient information (such as allergies); improved quality because of decreased errors based on erroneous information (such as incorrect allergies) More efficient and more thorough review of normal and abnormal lab results Improved patient adherence to provider instructions because they can review care plans More efficient and more thorough review of normal and abnormal radiology results

Decrease costs and more efficient care because of improved understanding of health issues by patient’s health care proxies

AMIA 2007 Symposium Proceedings Page - 375

PHR Function

Type of PHR Value

Health care expense/billing tracking

Improved understanding of health care expenses

Insurance understanding/coverage

More appropriate selection and utilization of health insurance/health plans Improved compliance with standards of care Functions that enable patients to make more informed decisions Improved patient understanding of diagnoses Improved patient lifestyle choice

Standard of care review Personal Decision Support Diagnosis education support Lifestyle choices support Medication support Provider selection support Shared patient experiences support Treatment education support Personal Health Journal

Summary of health information for secondary use Summary of important health events (e.g. Continuity of Care Record) Personal Health Monitoring and Management Device data collection Symptom diaries

Improved patient medication compliance Improved patient understanding of provider quality Improved sharing among patients with common diagnoses Improved patient understanding of treatment options Functions that allow patients to maintain their own health information and share it with others Improved use of health information for secondary uses Improved sharing of health information within the health care system Functions that allow patients to monitor and manage their own health status outside of traditional care settings Improved patient monitoring Improved patient documentation of their diseases Improved clinical outcomes from improved self-care

Self management

Wellness management

Personal Health Reminders Consults/referrals Reminders Immunization Reminders Lab Reminders Medication Reminders

Improved self-monitoring of vital statistics such as height, weight, diet, exercise to improve lifestyle choices Functions that allow patients to improve adherence to care plans Improved follow-through on consults/referral Improved immunization rates Improved laboratory compliance Improved medication compliance

Example of PHR Value Decrease costs because of improved understanding of actual health care expense, especially when PHR paired with medical saving accounts Decrease costs and more efficient care because of improved understanding of health insurance coverage Decrease costs and more efficient and higher quality care because patients better understand care standards

Improved quality and efficiency of care because of better patient understanding of their diagnosis Improved diet and exercise behaviors through better online education and support Improved outcomes from adherence to medication regimen Improved quality and efficiency of care through selection of higher quality providers Enhanced knowledge of and participation in patient support groups Improved efficiency and quality of treatment because patients better understand treatment options

More efficient transfer of health information for secondary use, such a school physicals, employment clearance, disability evaluation, etc. Decreased costs through more efficient transfer of health information within the health care system

Improved data for enhanced chronic disease management Improved data from patients resulting in better care planning Improved self-directed wellness or disease management, for example diet and exercise logs, or recording home blood glucose determinations and medication usage in diabetes care Informed lifestyle choices and improved long term outcomes

Email or other active reminders if consults/referrals do not occur in a timely manner Email or other active reminders for immunizations Email or other active reminders if ordered lab does not occur in a timely manner Personal Digital Assistant (PDA) or other active reminders for medication administration and refills


PHR Function

Type of PHR Value

Example of PHR Value

Radiology Reminders

Improved radiology compliance

Screening and preventative care Reminders Visit Reminders

Improved screening and preventative care compliance

Email or other active reminders if radiology orders not obtained in a timely manner Email or other active reminders for routine screening and preventative care

Improved visit compliance

An Approach to Assessing PHR Value This PHR framework is an important part of a comprehensive analysis of potential PHR value. Overall, an assessment of PHR value should include five important steps: • Data gathering • Framework finalization • Evidence synthesis • Model development • Report generation A. Data Gathering: Based on the initial PHR function framework, a thorough data gathering effort should be undertaken, including a systematic review of the current literature on PHR value and interviewers with key PHR stakeholders and researchers. This effort should gather evidence on costs and impacts from all health care information technology domains that might apply to the framework, including disease management, telehealth, health information exchange and so on. The systematic review process should include literature from both peer-reviewed and general trade literatures and focus on the current adoption, use and effectiveness of PHRs and associated technologies, focusing on specific PHR functions. Standard methods for evidence assessment should be used during the data-gathering phase, such as those used in systematic reviews of clinical evidence.7 Given the burgeoning PHR marketplace, data should also be gathered from interviews with PHR vendors, developers and experts. Questions should focus on understanding the current and planned use of PHRs in the industry and assessing experience with the actual and potential impacts of PHR functions. Likewise, interviews with experts in other health care information technology domains, where applicable to PHR functions, should also be completed. B. Framework Finalization: The PHR framework previously outlined (Table 1) should be informed by the data-gathering phase, and thus modified to

Email or other active reminders for scheduled appointments

include additional PHR functions. According to our research, no such framework currently exists in the literature. Therefore, ensuring a comprehensive PHR framework to inform future analysis will be particularly important. C. Evidence Synthesis: Once the final PHR function framework is created, data from the literature, interviews and experts should be examined to determine the value of specific PHR functions. As with similar health care information technology value analyses, data will usually point to certain “clusters” of value for specific functions. D. Model Development: The next step in a comprehensive analysis of PHR value should then integrate all of these value clusters into a complete model. For example, the data may show a value cluster around the PHR function of medication support (personal health decision support) by decreasing adverse drug events (ADEs). Thus one part of a model would input the number of medications and ADEs for a typical patient to project the impact of PHR medication support on ADE rates over a specified time period and population. These projections would include the decrease of adverse events and the resulting quality improvements (i.e. fewer ADE-related visits and hospitalizations), and cost savings (from these avoided visits and hospitalizations). The model should also include assumptions about which entity is paying for the PHR (or PHR function) and the resulting costs. Lastly, the model should project to whom these benefits and costs accrue and thus the net impact of PHR functions. A thorough model of PHR value should apply this approach across all PHR functions for which data exists, calculating the impact of PHR functions on clinical and financial outcomes. The model should also project the costs to those who sponsor PHRs and the benefits accruing to patients, providers, payers, and employers.


A robust PHR value model should allow for multiple analyses and to model the value of PHR functions under different scenarios. For example, a PHR sponsored by an insurance company, such a Blue Cross and Blue Shield, would most likely have functions that rely on claims data while a PHR sponsored by an EHR vendor, such a Epic’s MyChart, would have functions that use clinical data. Given the differences in sources of data, a model should aim to project the likely differences in value. E. Report Generation: Once the PHR value model is complete and simulations run, all aspects of the PHR value analysis should be integrated into a comprehensive report. Besides discussing details of each of the other four steps in the value of PHR analysis, the report should also include a summary of findings and policy implications based on the model projections. Reported results should include results of national PHR adoption based on model projections and a discussion on the barriers to widespread PHR adoption.

5. Walker J, Pan E, Johnston D, Adler-Milstein J, Bates DW, Middleton B. The value of health care information exchange and interoperability. Health Aff (Millwood). 2005;Suppl Web Exclusives:W5-10-W518. 6. Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: Definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc. 2006;13:121-126. 7. Mulrow M, Cook D, eds. Systematic Reviews: Synthesis of Best Evidence for Health Care Decisions. Philadelphia, PA: American College of Physicians; 1998.

Conclusion PHRs are becoming an increasingly important research subject in medical informatics, and many health care stakeholders are eager to understand the value PHRs might deliver. To help inform to development of this nascent information technology, PHR stakeholders need an analysis that identifies the likely drivers of PHR value by type of function. By identifying which PHR functions stand to produce the greatest value if widely adopted, PHR developers have a greater likelihood of producing successful applications. The PHR framework presented here and the accompanying approach should be used to produce a comprehensive assessment of PHR value. REFERENCES 1. The personal health working group. Final report. Markle Foundation; 2003. 2. Bu D, Pan E, Walker J, et al. Benefits of information technology-enabled diabetes management. Diabetes Care. 2007;30: 1137-1142 3. Johnston D, Pan E, Walker J. The value of CPOE in ambulatory settings. J Healthc Inf Manag. 2004;18:5-8. 4. Kendrick D, Bu D, Pan E, Middleton B. Crossing the evidence chasm: Building evidence bridges from process changes to clinical outcomes. J Am Med Inform Assoc. 2007;14(3):329-339
