Designing a patient-centered personal health record to promote preventive care

Patients collecting and retaining paper copies of their immunizations and medical records can be viewed as the earliest form of a PHR. With the advent of the computer age, these paper-based systems evolved into electronic formats [14]. Websites and software products emerged that allowed patients to type in their medical information. The next advance in PHRs was to interface with electronic information to access clinical data that patients either do not know or cannot recall accurately. Some systems were "stand alone," extracting information from claims and insurer data or external registries [15, 16]. Other systems were "integrated," being connected directly to the electronic medical record (EMR) of the patient's clinician and potentially allowing a bidirectional flow of information [17, 18]. Linking to records allowed the PHRs to show patients lists of medications, diagnoses, laboratory results, and test dates. Now, PHRs are evolving to promote clinician patient communication through secure messaging, which is highly desired by patients [19]. It can allow patients to ask questions and clinicians to send simple responses, instructions, reports, clinical data, and reminders. Some PHRs also provide basic recommendations about when patients need preventive and chronic care based on when they last received a service; and to deliver educational materials to the patient over the web.

These PHR advances have been very beneficial to patients, but the technology allows more to be done, particularly to promote the delivery of preventive care. For example, a messaging service that allows patients to communicate with clinicians is a reactive feature, whereas current technology can be proactive in giving patients instant access to comprehensive recommendations and information about priorities for improving their health that may have escaped their attention.

Showing patients their medical information from clinical datasets and EMRs can help patients and clinicians reach a common understanding of diagnoses, medications, and results [20, 21]. However, much of the information and clinical terminology needs translation into lay language. Diagnoses generated through an administrative claims process may even be phrased as arcane ICD-9 codes. Medications as well as laboratory, radiology, and procedural tests may be labeled for clinicians and not patients (e.g. fecal occult blood test rather than stool test for colon cancer screening or "2 PO BID" rather than "take 2 pills twice daily by mouth").

Displaying clinical information without interpretation or context does not inform patients about what they need to do to improve their health. Some PHRs are beginning to provide basic interpretation [22], as seen by providing laboratory reference ranges. While useful for some values, many laboratory reference ranges are incorrect for individual patients. An example is the automated labeling of low density lipoprotein cholesterol values of greater than 100 mg/dL as abnormal, which only applies to patients with coronary artery disease or an equivalent risk.

Other PHRs allow practices to define the age and frequency they wish patients to receive services; the PHR then shows patients lists of when they received a test and when it is due next based on rules defined by the practice. This can overly simplify complex national guidelines and it is inefficient for practices to individually recreate prevention rules. Many recommendations need to be personalized to each patient's complex history (e.g. family history, prior results, and abnormal values); generating recommendations merely on a patient's age and gender will make recommendations appear less relevant for patients. Additionally, there is uncertainty about some recommendations and conflicts between different organizations' recommendations. This uncertainty and conflict needs to be presented to patients and clinicians in a manner that can allow them to decide what is right for them [23].

Finally, to promote delivery of preventive services, PHRs should provide support to allow patients and clinicians to act on recommendations. The specific support needed varies depending on each patient's circumstances as well as local resources but may include educational materials, decision aids, risk calculators, logistical support, and reminders. All of these features could be programmed into PHRs.

We sought to create and test a patient-centered PHR to more deeply engage patients in preventive care and health promotion, overcoming many of the barriers described above. The PHR that we developed is an interactive preventive health record (IPHR). Ongoing studies are evaluating its impact on outcomes. This manuscript describes the design and development of the IPHR and its use by patients and practices.

The IPHR design is based on a conceptual model to make information technology more patient-centered [27]. The model specifies five necessary components which include: (1) collecting patient information, (2) integrating existing clinical data, (3) interpreting patient information, (4) providing personalized recommendations, and (5) facilitating patient and clinician action. How these components were operationalized is described in greater detail below.

The IPHR addresses 18 clinical preventive services and their associated chronic conditions (Figure 2). Preventive services that have received an "A" or "B" recommendation from the U.S. Preventive Services Task Force (USPSTF) and that were prioritized by the National Commission on Prevention Priorities were selected for inclusion in the IPHR. The IPHR also addresses some of the chronic care recommendations associated with the USPSTF recommendations. For example, in addition to addressing screening for high cholesterol, the IPHR addresses managing high cholesterol.

We designed the IPHR to function in a wide range of primary care practices, including practices with diverse information technology infrastructure. Accordingly, the IPHR can function as a stand-alone system dedicated to prevention (as in the study practices with no PHR or Intuit™) or integrated into a practice's existing PHR with administrative functionality and secure messaging (as in the practices using MyChart™). The stand-alone version is web-based: clinicians direct patients to http://​www.​MyPreventiveCare​.​org and provide them with an individual identification (ID) number to establish an account. The ID number is required to allow the IPHR to connect to secure clinical information residing in the EMR (see "Information Sources," below). In the PHR-integrated version, patients use their existing PHR and click on the IPHR link, which launches the IPHR with their ID encrypted for a seamless single sign-on experience.

Once a patient establishes an IPHR account, the IPHR makes an open data base connection (ODBC) to the EMR of the patient's personal clinician and extracts all relevant and available clinical data (see Figure 3). These data elements represent standard clinical elements from patients' records. Accordingly, the IPHR can access this information from any electronic clinical data source. Patients are then shown their history, medications, immunizations, test dates, and results that relate to preventive care; and patients are asked to review, correct, and update their information.

Next, the IPHR administers a brief health risk assessment to ask patients about information that is not entered well electronically into EMRs or for which patients are the ultimate authority (e.g., health behaviors and psychosocial measures). Specifically, the IPHR's patient health risk assessment includes three questions about health behaviors and 9 questions about race/ethnicity, family history, and whether the patient previously had an abnormal pap smear, mammogram, or colonoscopy/sigmoidoscopy. The study sites reported not recording race/ethnicity in their EMR. The EMRs used by the study sites did not make it easy for clinicians to record family history with the necessary specificity to make screening recommendations (e.g. having a first degree relative with colorectal cancer diagnosed before the age of 60 years). While the IPHR could determine if other preventive results were normal or abnormal from the EMR data, findings from pap smears, mammograms, and biopsy reports from colonoscopies/simoidoscopies were recorded as text that the IPHR could not electronically interpret.

Next the IPHR makes personalized recommendations, based on nationally endorsed, evidence-based guidelines and relevant patient characteristics. The IPHR recommendations rely primarily on USPSTF guidelines but also incorporate recommendations from the Joint National Committee on Prevention, Detection, Evaluation and Treatment of High Blood Pressure (JNC VII) [28, 29], the National Cholesterol Education Program (NCEP-ATP III) [30, 31], the American Diabetes Association (ADA) [32], the Advisory Committee on Immunization Practices (ACIP) [33], Healthy People [34], and the Dietary Guidelines for Americans [35]. These guidelines are used because the USPSTF defers to them for guidance on immunizations (e.g. ACIP) or diagnosis and management (e.g. JNC VII, NCEP, or ADA), or because they set relevant national health behavior goals.

For some USPSTF recommendations, there is inconclusive evidence to tell patients whether they should receive a service, yet these are highly utilized services and a decision needs to be made about whether to deliver the service (e.g., whether to screen for prostate cancer or the age to start mammograms) [36]. Additionally, there are differences between some organizations' recommendations (e.g., USPSTF versus ADA's recommendation on who to screen for diabetes). The IPHR addresses these issues by identifying patients for whom there are uncertain or discrepant recommendations and promoting shared decision-making by explaining the issues, presenting how to make an individual choice based on personal risks and values, and providing decision aids and educational materials to aid in the decision-making process.

After the IPHR makes its determination of the patient's prevention status, it presents the patient an overview on a general summary page (Figure 4). This represents a snapshot of (a) what a patient needs now (i.e., clearly overdue preventive services or uncontrolled chronic conditions), (b) dates when preventive services were last received, (c) values from previous screening and monitoring tests, (d) categorical overviews of preventive care (e.g., cancer screening, heart care, health behaviors, vaccines, and other services), and (e) missing information. Recommendations are worded as simple statements and linked to visual status cues.

Patients are encouraged to click on any summary page item to reach a more detailed, personalized message about the preventive service (Figure 5). The wording of the messages is modified from language developed by the U.S. Department of Health and Human Service's website, HealthFinder.gov. The messages cover five domains: a summary of the patient's information (dates, values, risks, and goals), basic information about the condition, benefits of the preventive service, next steps based on the individual patient's profile, and information to guide next steps selected based on the patient's profile.

As reflected in our conceptual model, a key feature of the IPHR is to help patients take action to receive preventive care. Six specific features promote and reinforce action (Figure 5). (1) Recommendations are explicit. Both action statements on the summary page and next steps on the detailed personal message provide explicit, individually tailored recommendations on what a patient should do to improve their health. (2) Content is personalized. Detailed messages are derived from each patient's individual clinical profile and personal content is embedded throughout each detailed message to add further relevance and importance to the service. (3) Content is motivational. Messages highlight positive aspects of health and concretely show the benefits of making changes. (4) Self-management tools, decision aids, links to community resources, and logistical support are provided. Each message has a personalized list of additional resources to guide the patient's next steps. These resources are selected based on the patient's anticipated needs from existing sources that are non-commercial, evidence-based, consistent with guidelines, and patient-centered. (5) Historical information is presented. Information to guide the patient's next steps includes links to available prior test results, trended and graphically displayed to highlight changes over time. (6) Care is coordinated with the patient's personal clinician. After the patient uses the IPHR, a summary is transmitted directly to the EMR of the patient's clinician, listing the patient's updates/corrections, health behaviors, and overdue preventive and chronic care. This allows the IPHR to create a shared prevention agenda for the patient and clinician.

The IPHR is intended to function as a longitudinal record and reminder system for patients and clinicians. The IPHR automatically re-queries the EMR to assess if patients are overdue for services, updates the patient's record, and generates patient email reminders and clinician EMR summaries if the patient needs a service. When patients revisit the IPHR, the general summary page reflects the most recent values and dates. Patients can continue to access past values and trends through their detailed personal prevention recommendation pages. This essentially makes the IPHR a sophisticated, longitudinal, personalized prevention plan that evolves in parallel with the patient's record [10].

The IPHR was generally well accepted by primary care practices and patients. The integration of the IPHR into the practices' information systems was successful at all sites including extracting patient data from the practices' EMRs, sending summaries back into the EMRs, and integrating with the existing PHRs. Data from the 14 practices' electronic medical records indicate that 50,124 unique eligible patients had an office visit during the 6-month observation period, of whom 7,235 (14.4%) established an IPHR account and received preventive recommendations. The percentage of patients who used the IPHR ranged from 1.5% to 28.3% across the 14 practices. The patients who self selected to establish IPHR accounts were slightly older and more likely to be male then the general population of patients seen by the practices but were otherwise representative of the general primary care population (Figure 6). Of the patients who established an IPHR account, 49% and 10%, respectively, made at least one return visit to the site 0-3 months and 3-6 months after creating their IPHR account.

Data collected by web-tracking software indicate that the IPHR received 2,595 visitors per month. The average visitor spent 7 minutes 21 seconds on the site and viewed 8.45 pages on the IPHR website per visit. The majority of patient comments when using the IPHR were positive. Patients expressed that the system was easy to use ("Great program! Very user friendly, thank you."); they liked seeing their health information ("It is great to go to the site and see test results."); and they believed that the IPHR recommendations helped them to manage their preventive needs ("I see that I still have some work to do, but am pleased with the progress I have made since my last physical"). Only three patients asked to have their accounts deleted because of privacy concerns. Negative comments included a desire to see more information ("I'd like to be able to see all of my lab results") and an expression of frustration when results that were only available in hard copy were not accessible. One patient, whose labs were scanned into the system rather than transmitted electronically said, "My test results are three years out of date. I need to see my most recent information." During pre-IPHR implementation learning collaboratives, practices were concerned about the extra work required to persuade patients to use the system and to deal with incoming messages. However, after fielding the IPHR, the practices reported that patients liked the system, it was easy to explain to patients how to use the IPHR, and it helped them to deliver care. Specifically, practices reported using the IPHR to help patients prepare for visits, augment health behavior counseling discussions, better explain lab results to patients, assist with population management, remind patients when they were due for services, prompt clinicians about overdue care, and fulfill Medicare annual wellness visit requirements.