Journal:The evolution, use, and effects of integrated personal health records: A narrative review

Full article title	The evolution, use, and effects of integrated personal health records: A narrative review
Journal	electronic Journal of Health Informatics
Author(s)	Zieth, Caroline R.; Chia, Lichun Rebecca; Roberts, Mark S.; Fischer, Gary S.; Clark, Sunday; Weimer, Melissa; Hess, Rachel
Author affiliation(s)	Center for Research on Health Care, University of Pittsburgh; University of Pittsburgh School of Medicine; Weil Cornell Medical College; University of Pittsburgh Graduate School of Public Health
Primary contact	Caroline Zieth - Email: ziethcr@upmc.edu
Year published	2014
Volume and issue	8 (2)
Page(s)	e17
DOI	None
ISSN	1446-4381
Distribution license	Creative Commons Attribution-NonCommercial-ShareAlike 3.0
Website	http://www.ejhi.net/ojs/index.php/ejhi/article/view/247

Abstract

Objective: To present a summarized literature review of the evolution, use, and effects of Personal Health Records (PHRs).

Methods: Medline and PubMed were searched for ‘personal health records’. Seven hundred thirty-three references were initially screened resulting in 230 studies selected as relevant based on initial title and abstract review. After further review, a total of 52 articles provided relevant information and were included in this paper. These articles were reviewed by one author and grouped into the following categories: PHR evolution and adoption, patient user attitudes toward PHRs, patient reported barriers to use, and the role of PHRs in self-management.

Results: Eleven papers described evolution and adoption, 17 papers described PHR user attitudes, 10 papers described barriers to use, and 11 papers described PHR use in self-management. Three papers were not grouped into a category but were used to inform the Discussion. PHRs have evolved from patient-maintained paper health records to provider-linked electronic health records. Patients report enthusiasm for the potential of modern PHRs, yet few patients actually use an electronic PHR. Low patient adoption of PHRs is associated with poor interface design and low health and computer literacy on the part of patient users.

Conclusion: PHR systems that account for patient’s needs and skills can facilitate their adoption. Common barriers are avoidable when patients receive adequate guidance on useful features as well as technical support. When implemented effectively, PHRs can increase patient participation in health management, and improve patient-physician communication and health related decision making.

Keywords: Personal Health Records; Electronic Health Records; Electronic Medical Records

Introduction

Involving patients in their health care using information technology (IT) such as interoperable personal health records (PHRs) may increase healthcare efficiency and improve quality while reducing medical errors. The idea behind a PHR has existed for decades. Initially, PHRs were in the form of paper medical records created and maintained by patients and used to augment healthcare provided in person. These records, compiled and stored on paper by patients and families, allowed individuals to preserve their complete medical history. As IT evolved, patients and families began to electronically store many health-related documents, including clinical notes from different health care providers, laboratory test results, and medication prescription records, essentially creating electronic versions of paper PHRs.

Early patient-initiated PHRs have evolved into a wide variety of computer-based applications that allow patients to securely store health-related information such as laboratory test results; these can be maintained solely by patients or by both patients and clinicians. (****Temp move****)

These PHRs range from original, stand-alone applications where patients enter the majority of their medical information to those integrated into the clinical health record. In beginning to create standards for PHRs, the Markle Foundation’s Connecting for Health Collaborative defined a PHR as “an electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment". Currently, an estimated 70 million insured patients have access to some form of electronic PHR and those who do not would like access.

(****Temp move****) Currently, employers, healthcare providers, and third party organizations have deployed a variety of electronic PHRs differing in architecture and function.

When integrated with provider-maintained electronic health records (EHRs), PHRs are electronically linked to clinical information in the EHRs, which are repositories of all electronically available patient medical information from multiple sources, and which are updated by health care providers. With integrated PHRs, patients can view automatically populated medical information, such as laboratory test results. They have advantages over stand-alone PHRs by allowing securely linked patient-provider communication outside traditional clinical encounters. Integrated PHRs provide a means to create a shared patient record through evolving features including patient-physician collaborative tools and interactive decision-making tools, personalized management tools for chronic conditions, integrated and linked health information resources, and patient-entered information.

To inform healthcare decision-making, PHR development, and future research on clinical outcomes, this literature review summarizes the evolution, use, and effects of PHRs, with a focus on integrated PHRs. Four broad areas are address: (1) the characteristics of PHR use, including their evolution and adoption, (2) patient and provider attitudes toward PHRs, (3) barriers to PHR adoption and use, and (4) the effects of PHRs on patient management and outcomes.

Methods

Medline and PubMed were searched to identify English-language articles focused on PHRs and published between 1970 and 2011. Studies were included based on the content of titles and abstracts, removing those for which the abbreviation PHR did not stand for ‘personal health record’. Of the 733 retrieved references initially identified in the search, 230 studies were selected as relevant based on initial title and abstract. Two independent reviewers (LRC and RH) screened these and a single reviewer (CRZ) verified the studies contained information regarding PHR evolution, consumer attitudes, barriers to use, and/or self-management through in-depth investigation of study content. Information from the final 52 papers, representing both qualitative and quantitative studies, was placed into four main categories: (1) the characteristics of PHR use, including their evolution and adoption, (2) patient and provider attitudes toward PHRs, (3) barriers to PHR adoption and use, and (4) the effects of PHRs on patient management and outcomes. Papers could contribute information to multiple categories (Tables 1-3).

Results

Evolution and adoption of PHRs

Eleven papers described the evolution of PHRs and the settings in which they are used. Early examples of PHRs were paper-based and patient-maintained. Use of paper-based PHRs has continued even after computerized information systems had become available. For example, parents have routinely collected their children’s basic medical information and tracked their child’s development and immunizations using baby books or have carried wallet cards containing basic personal medical data (i.e., emergency contacts, blood types and allergy information). Patients continue to keep some paper records despite the rise of electronic PHRs. Currently almost half (42%) of Americans keep some form of a PHR, defined in this article as any single place where medical information is kept, and the majority (87%) are paper-based.

As IT developed, patients began creating digital rather than paper records. Electronic PHRs evolved as patients started entering their health information into computer-based applications. PHR functionality expanded to give patients the ability to view personal health information stored in their health care provider’s records. Web-based PHRs originated in the emergency room and included online emergency medical records. As practice and hospital-based EHRs evolved, they merged with PHRs and have become a major source of the information contained within integrated PHRs. Patients now have access to integrated PHRs through their insurers or healthcare providers; however, patient adoption of PHRs has lagged behind this access. Preliminary estimates from the National Ambulatory Medical Care Survey (NAMCS) found that 51% of physicians reported providing patients with access to an integrated or partially integrated PHR (i.e. an electronic medical record (EMR) or EHR linked PHR). In a 2010 Consumer and Health Information Technology survey, however, only 7% of Americans reported having used either a stand-alone or an integrated PHR; a 2008 Markle Foundation survey reported fewer than 3%.

Attitudes toward adoption and use of PHRs

Seventeen papers described patient or provider attitudes toward electronic and paper-based PHRs (Table 1). Patients are eager to use PHRs for their potential to improve health care delivery and outcomes but these positive attitudes do not translate into use. Patients have mixed reasons for using or not using a PHR some of which are tied to their motivation to improve health outcomes and their relationship with their physician. Understanding patient motivation is important, particularly when designing and adopting PHRs. Patients seek the ability to control access to their health information and believe they should have access. Patients view integrated PHRs favorably with one report finding that 60% of patients indicate they would use an integrated PHR to look up test results and record their medication, and another survey finding that 75% of patients would communicate with physicians electronically if given the option. Patients’ motivation to participate in their health care fosters their interest in viewing their PHRs and viewing PHRs influences patients’ care-related decision-making. Diabetic patient users of an integrated PHR reported receiving care more quickly, and connecting with their doctor more easily. An integrated PHR with features such as secure patient-physician messaging, medication history updating, and online requests for medication renewals was highly valued by elderly and disabled patients, patients with chronic conditions, and middle-aged female patients. The ability to contact health care providers through secure messaging in an integrated PHR provided a feeling of security for patients in the Netherlands. Patients want to view their records in order to have detailed information about their health, and those using an integrated PHR reported feeling more in control of their chronic conditions and a sense of illness-ownership, which motivated them to contribute information to their EHR. Patients’ satisfaction with their physicians influenced their use of an integrated PHR. Patients expressing satisfaction with their patient-provider relationship were less likely to use an integrated PHR than patients expressing dissatisfaction. Those expressing dissatisfaction viewed access to their PHR as a means of gaining knowledge or control over their health.

Five studies reported on ease of use for patients accessing an integrated PHR. More than 60% of patients with head or neck cancer in the Netherlands and the majority of middle-aged adult patients in the United Kingdom found an integrated PHR easy to navigate. Female patients who used an integrated PHR rated various functions easier to use than males. Several studies, however, reported that patients did not maintain health information in their PHRs despite ease of use. Elderly patients found value in using an integrated PHR for updating medications, health problems, and lab test information, yet failed to annotate certain health information such as immunizations and laboratory test results, which the authors attributed to difficulties with the user interface of the integrated PHR.

Table 1: Attitudes toward Adoption and Use of PHR

Authors/Year Population Design Results Implications According to Authors Krist et al. (2012) n=4,500, patient users of an interactive PHR (IPHR) from 8 primary care practices EMR and survey data were analyzed to determine IPHR effectiveness •Patients (25% ) who used the IPHR were up-to-date on all services; double the rate for non-users Practices need to inform patients about PHR’s value and relevance to care Witry et al. (2010) n=28, physicians from 4 family medicine practices 4 focus groups to explore physician views of PHRs •Physicians thought PHRs beneficial for certain patient populations (e.g., mobile populations) •Physicians expressed doubt about the likelihood of patients updating their PHRs Providers are unfamiliar with electronic PHRs; physician use of electronic PHRs may increase with exposure Tobacman et al. (1996) n=100, patient users of a standalone PHR Telephone questionnaire to determine acceptance, usefulness, and impact of PHR •Adult patients were interested in PHRs There is an unmet need among patients for PHR access Winkelman et al. (2005) =12, inflammatory bowel disease patient users of an EMR linked PHR in Canada Qualitative study using in-depth interviews and focus groups •PHR access promoted a sense of illness ownership, healthy practices, and participation in illness management Direct patient participation is crucial for developing and designing a PHR system Zickmund et al. (2007) n=39, diabetic patient users of an integrated PHR from 4 primary care practices 10 focus groups conducted to determine impact of an electronic PHR on patient-physician relationship •Patients appreciated having access to lab results •Patients appreciated using the PHR to communicate directly with their PCP A good patient-provider relationship may diminish the perceived utility of a PHR Brink et al. (2005) n=36, cancer patient users of an electronic PHR and (n=36) general practitioners in the Netherlands Questionnaires completed on PHR use after 6 week period •PHR system was highly valued by patients •Patients (64%) reported increased knowledge of illness and treatment Using electronic PHR in conjunction with clinical practice is recommended Jones et al. (1999) n=783, general medicine and dental practitioners, and patient users of an electronic, stand-alone medical-dental PHR in the United Kingdom 3 part study: survey, randomized trial, and assessment of PHR records Patients felt positively about the PHR and recognized their role in maintaining information within •Dentists and doctors expressed positive attitudes towards the PHR Patient’s positive attitudes towards PHRs may increase after extended utilization Pyper et al. (2004) n=606, patient users of an integrated PHR in the United Kingdom Postal distribution of questionnaire •Patients concerned with the security and privacy of the PHR •Majority of patients wanted access to their records The ideal PHR should be developed by a patient-physician partnership Zayas-Caban et al. (2007) n=7, patient users of a hypothetical PHR system 2-part interviews conducted to determine how well patients understand PHRs •Adult patients expressed positive attitude concerning access to electronic PHR •Patients understood how they would use PHR to manage their health Patients’ needs should be addressed in the design of and education about PHRs Cox et al. (2008) n=1202, stakeholders, healthcare consumers, and patient users of an integrated PHR Telephone, paper and web surveys plus focus groups assessed consumer’s views •Stakeholders trusted a PHR developed by a not-for-profit over one developed by government or private-sector organizations •Consumers expressed privacy concerns A community outreach and communications program may inform the development of a PHR Keselman et al. (2007) n=103, chronic disease patient users of both paper-based and electronic PHRs Survey to determine patient needs and experiences with their health records for optimizing PHR design •Patients felt a secure, online PHR provided easy access to EHR •Patients felt medical records should be reviewed and discussed with health professionals to enhance patient comprehension PHRs should offer the ability to view radiology reports, physicians’ notes, and diagnostic images Hassol et al. (2004) n=1,421, patient users of an integrated PHR and (n=10) primary care physicians Online survey and focus groups with patients; one-on-one interviews with physicians •Positive patient reports on ease of use and satisfaction with PHR PHRs improve efficiency and effectiveness of health care Kim et al. (2007) n=46, Elderly and disabled patient users of an electronic PHR PHR database log analyzed to determine patient usage patterns •Amount of activity by participants suggests that users found the electronic PHR valuable Information for behavior of users/nonusers should be studied to optimize electronic PHRs for underserved populations Hess et al. (2007) n=39, patient users of an integrated PHR Focus groups, patient’s reactions to an electronic PHR in diabetes self-management •Trusted, centralized health information was useful to patients •Participants most appreciated electronic communication feature and health-related management tools •Frequent users reported a sense of empowerment Patients highly valued the secure, electronic messaging feature of the electronic PHR Cimino et al. (2002) n=13, patient and physician users of an integrated PHR PHR log file, online questionnaire, and telephone interview data analyzed •Patients felt increased ownership of their health •Patients were impressed with the PHR •Physicians reported improved communication with patients PHR systems may improve health outcomes for select groups of patients Wiljer et al. (2010)[38] n=250, cancer patient users of an integrated PHR in Canada Log files analyzed to assess the impact of electronic PHR access •Patients preferred receiving PHR support by phone as opposed to email Optimizing PHR functionality may decrease human error Pyper et al. (2004)[52] n=100, patient users of an integrated PHR in the United Kingdom Interviews conducted to evaluate first-time patient-users’ experience with an electronic PHR •Patients found the PHR useful and easy to use PHR access may improve patient care; requires additional resources to support future demand

Barriers toward adoption and use of PHRs

Ten papers described patient or physician barriers to using electronic and paper-based PHRs (Table 2). A broad range of barriers to PHR adoption exists, many of which may be overcome by providing adequate technical support. Trends noted with paper-based PHRs, such as failure to document adult immunizations, laboratory test results, allergies and blood sugar, continued into electronic PHRs. Difficult concepts, unfamiliar medical terms, and unknown abbreviations are commonly cited barriers. Low computer literacy, low health literacy, and computer anxiety are additional patient-reported barriers in accessing electronic PHRs. The time requirement for learning and, when information is not tightly linked between the PHR and EHR, entering personal health information into an electronic PHR system is problematic for patients as well as health care support staff. Nearly all breast cancer patients (98%) in one Canadian study required technical support when accessing their electronic PHR. Barriers to using an integrated PHR included lost or unknown user names and passwords, and patients’ lack of awareness of useful features.

Patients are better able to access and maintain a PHR when given tailored education, technical assistance, self-management support, consumer-friendly PHR interface design, and access to trained staff. Implementing these support mechanisms may require additional resources. Patients battling cancer found learning how to use an integrated PHR system was not difficult after receiving personal instruction. Integrated PHRs could alleviate comprehension barriers by providing online terminology support such as using a text translator to clarify medical terms. In addition, offering patients emotional, informational and/or tangible support when accessing EHR/EMR data may increase the perceived and actual utility of an integrated PHR.

Table 2: Barriers toward Adoption and Use of PHRs

Authors/Year Population Design Results Implications According to Authors Tobacman et al. (1996) n=100, patient users of a standalone PHR Telephone questionnaire to determine acceptance, usefulness, and impact of PHR •Patients failed to record medical information Patient use of a PHR may increased over time Zickmund et al. (2007) n=39, diabetic patient users of an integrated PHR from 4 primary care practices 10 focus groups conducted to determine impact of an electronic PHR on patient-physician relationship •Patients expressed privacy concerns with email feature •Patients who expressed satisfaction with their physician were less likely to want PHR access Educating patients about e-mail security and offering direct provider e-mail may encourage patient use Brink et al. (2005) n=36, cancer patient users of an electronic PHR and (n=36) general practitioners in the Netherlands Questionnaires completed on PHR use after 6 week period •Patients (25%) encountered technical difficulties while using the PHR •General practitioners questioned PHR utility; the majority did not use the PHR Integrated PHRs may increase patient and provider use Keselman et al. (2007) n=103, chronic disease patient users of both paper-based and electronic PHRs Survey to determine patient information needs and experiences with their health records •Lack of patient comprehension of medical terms/abbreviations, medical record information, and lab test results Patients need carefully designed PHRs and comprehensive patient data Hassol et al. (2004) n=1,421, patient users of an integrated PHR and (n=10) primary care physicians Online survey and focus groups with patients; one-on-one interviews with physicians •Patients reported problems with information accuracy and completeness in their medical records Patient and provider needs are best met when EHR data is accurate and complete Kim et al. (2007) n=46, Elderly and disabled patient users of an electronic PHR PHR database log analyzed to determine patient usage patterns •Patients did not fill certain fields in their PHRs with ’Immunizations’ being the least updated information category Analyzing system usage logs led to improvements of the studied PHR Hess et al. (2007) n=39, patient users of an integrated PHR Focus groups, patient’s reactions to an electronic PHR in diabetes self-management •Patients reported not knowing their username, password, and features included in access to PHR •Patients reported inaccurate information and missing lab results Patients may abandon PHRs if their expectations are not met Lober et al. (2006) n=38, elderly, disabled patient users of an integrated PHR Surveys distributed to measure patient barriers with an electronic PHR system •Patients experienced computer literacy issues and computer anxiety •Cognitive impairments among participants affected their ability to maintain information in their PHRs Patients could create and maintain PHRs with assistance from registered nurses Wiljer et al. (2010) n=250, cancer patient users of an integrated PHR in Canada Log files analyzed to assess the impact of access to an electronic PHR •Patients experienced technical difficulties and required technical support while using their PHRs PHR access requires technical and healthcare staff support Pyper et al. (2004)[52] n=100, patient users of an integrated PHR in the United Kingdom Interviews conducted to evaluate first-time patient-users’ experience with an electronic PHR •Patients requested explanation of medical terms and tests/results •Patients (70%) found errors in their medical records Patients need time and assess to support staff when using their PHRs

Notes

This presentation is faithful to the original, with only a few minor changes to presentation. Table 1–3 have been placed slightly differently. Some references didn't include links to PDF files or were missing issue numbers. Additionally, all journal references did not list DOIs and PubMed IDs; these have been added to the references to make them more useful. Finally, in the PDF a couple of references were placed out of order by appearance, particularly references nine and ten in the introduction. Because the wiki automatically assigns reference numbers based on order of appearance, the reference numbers here ultimately do not match up with those in the original paper. This was unavoidable.