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|
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: firstname.lastname@example.org|
|Volume and issue||8 (2)|
|Distribution license||Creative Commons Attribution-NonCommercial-ShareAlike 3.0|
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
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. Currently, employers, healthcare providers, and third party organizations have deployed a variety of electronic PHRs differing in architecture and function. 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.
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.
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).
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
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
Role of PHRs in self-management
Eleven papers examined patient use of electronic and paper-based PHRs in self-management (Table 3). PHR functions helping patients to better manage their health care allow them to enter, record, and track their own health information. Interactive features within EHR-linked PHRs have the potential to increase patient participation in illness management, improve patient-physician communication, and increase a patient’s sense of illness-ownership. As it stands, there is currently a lack of concrete evidence that PHRs fulfilled the expectations set for them. While several studies have reported on improved clinical markers for patients with chronic conditions using integrated PHRs, few have demonstrated effects on clinical outcomes. This may be due to the inherent complexity of conducting health IT research, the variability in characteristics and features of electronic PHRs from practice to practice, or the absence of agreement about the standard definition of a PHR.
Patients with chronic conditions may have the most to gain from using integrated PHRs. Improvements in diabetes-related clinical markers have been reported in studies using PHRs that incorporated systematic, active interactions between patients and providers, including improved glycemic control and blood pressure. Adult patients with type 2 diabetes using an integrated PHR were more optimistic about their chronic disease management and their relationship with their primary care physician. Although patients appreciate viewing their medical records, some have a greater need to record daily personal health information in a PHR. Providing patients with type 2 diabetes with the option to upload measurements such as blood glucose levels can enable physicians to make between-visit medication adjustments. Physicians and patients from primary care practices in mainly urban settings regarded the integrated PHR as an essential component of care and a means to establish active patient involvement.
- Table 3: Role of PHRs in Self-Management
Patients embrace the idea of PHRs, but adoption has been slow as patients lack the knowledge and training required to fully engage with integrated PHRs, and remain unaware of useful features. Patients’ understanding of integrative PHRs’ value and relevance to care may increase patient adoption; therefore, practices may need to offer a wide range of materials and processes to inform patients. Overall, patients prefer integrated PHRs due to privacy concerns and their desire to be connected to their doctors. Patients report an interest in communicating with their providers and are less interested in adding health-related data. Specific features of integrated PHRs, such as the ability to look up test results and email physicians, appeal to patients, yet patients are deterred when confronted with unfamiliar medical terms and the need to memorize user names and passwords, or are lacking in health and computer literacy. PHRs will likely be more successful and effective when practices provide guidance to health care professionals in health record management and when patients receive both educational and technical support when accessing PHRs. When used effectively, PHRs can engage patients in their health care, resulting in increased illness ownership and positive health outcomes. However, conclusive evidence of the clinical value of using PHRs is needed as studies have yet to demonstrate the effects of PHR adoption on clinical outcomes.
The ideal PHR actively engages patients in sharing and exchanging health information with their clinicians by offering a full spectrum of high functioning health IT capabilities to improve patient care and outcomes beyond the traditional clinical encounter. However, a consensus on what information to include in an integrated PHR has yet to be reached. Some integrated PHR systems offer such functionality, but do not provide patients with all possible capabilities. Future integrated PHRs will likely offer secure patient-physician messaging, incorporate decision-support systems, evaluate patents’ needs using evidence-based guidelines, and contain applications that offer behavioral feedback and the capabilities for individualized recommendations. Furthermore, the adoption of national standards for integrated PHRs will be necessary to ensure the integrity and long-term sustainability of PHRs. The Certification Commission for Health IT has recommended certification for specific PHR features, including privacy, security, interoperability, and functionality.
Multiple studies have examined patient attitudes towards PHRs and usage among special populations. Specific patient populations, such as those with chronic or multiple illnesses, may benefit directly from integrated PHRs, which could motivate continued use. However, current evidence demonstrating the benefits of PHRs in chronic disease management is lacking. The existing evidence showing that PHRs have value is restricted to diabetes management. Patients in developed countries with diabetes tend to utilize PHRs more than healthy patients.
Studies examining the effects of age, race, ethnicity, and sex on patient attitudes and usage have been inconclusive, demonstrating effects of these variables in some comparisons but not others. Factors such diagnosis, age, gender, and country of origin may account for the reported variation. Patient motivations for using a PHR are tied to and highly influenced by the patient-physician relationship, physician attitudes toward PHRs, and the desire for illness ownership and control over the dissemination of medical information. Patients are likely to adopt, use, and value an integrated PHR that is user-friendly, provides a high level of privacy and security, and offers advanced features such as messaging, editing, and medication renewal capabilities. Patient adoption and use will increase as health IT developers integrate patient feedback in the development process.
This review includes several limitations. First, the majority of studies included in this review were authored in the United States. However, 13 of the 52 papers selected were authored outside the United States, including five from Canada, four from the United Kingdom, and the remaining from Spain, Serbia, Germany, and the Netherlands. Second, biases in the literature include small sample size, non-random, self-selected samples, and limited ethnic, racial, and socioeconomic diversity. Only one paper included non-English speaking participants. Finally, although we have discussed many of the important findings and themes in the literature, it was not possible to detail every factor affecting PHR evolution and adoption, patient user attitudes toward PHRs, patient reported barriers to use, and the role of PHRs in self-management.
Integrated PHRs have the potential to improve the patient-provider relationship, enable shared decision-making, and allow the healthcare system to move toward a more personalized healthcare delivery system. Integrated PHRs will have a broader impact on public health as they evolve higher levels of functionality and as physicians increase PHR adoption. Since 2012, the federal government has given over $5 billion to providers and hospitals for the adoption and meaningful use of qualifying PHRs. Beginning in 2014, providers and hospital are required to make PHRs available to 50% of patients and achieve an adoption rate of 10%. Incentivizing providers and hospitals to adopt and become meaningful users of EHRs will provide more patients with the opportunity to use PHRs. However, the available evidence demonstrating that PHRs can support their intended use is insufficient as the existing literature on PHRs is limited and inconclusive. Further patient- and physician-focused research on factors affecting PHR adoption and frequency of use is needed to improve PHR functionality, inform health IT development, and determine what motivates patients to not only adopt but to continue using PHRs.
Conflicts of interest
No potential conflict of interest to report.
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- ↑ 34.0 34.1 34.2 34.3 34.4 34.5 34.6 34.7 34.8 34.9 Kim, E.; Stolyar, A.; Lober, W.; Herbaugh, A.; Shinstrom, S.; Zierler, B.; Soh, C.; Kim, Y. (2007). "Usage patterns of a personal health record by elderly and disabled users". American Medical Informatics Association Annual Symposium Proceedings 2007: 409-13. PMC PMC2655817. PMID 18693868. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC2655817.
- ↑ 35.0 35.1 35.2 35.3 35.4 35.5 35.6 35.7 35.8 35.9 Hess, R.; Bryce, C.; Paone, S.; Fischer, G.; McTigue, K.; Olshansky, E.; Zickmund, S.; Fitzgerald, K.; Siminerio, L. (2007). "Exploring challenges and potentials of personal health records in diabetes self-management: implementation and initial assessment". Telemedicine and e-Health 13 (5): 509-17. doi:10.1089/tmj.2006.0089. PMID 17999613.
- ↑ 36.0 36.1 36.2 36.3 Cimino, J.J.; Patel, V.L.; Kushniruk, A.W. (2002). "The patient clinical information system (PatCIS): technical solutions for and experience with giving patients access to their electronic medical records". International Journal of Medical Informatics 68 (1-3): 113-27. doi:10.1016/S1386-5056(02)00070-9. PMID 12467796.
- ↑ 37.0 37.1 37.2 37.3 37.4 Lober, W.; Zierler, B.; Herbaugh, A.; Stolyer, A.; Kim, E.H.; Kim, Y. (2006). "Barriers to the use of a personal health record by an elderly population". American Medical Informatics Association Annual Symposium Proceedings 2006: 514-518. PMC PMC1839577. PMID 17238394. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC1839577.
- ↑ 38.0 38.1 38.2 38.3 Wiljer, D.; Urowitz, S.; Apatu, E.; Leonard, D.; Quartey, N.K.; Catton, P. (2010). "Understanding the support needs of patients accessing test results online". Journal of Healthcare Information Management 24 (1): 57-63. PMID 20077927.
- ↑ Zeng-Treitler, Q.; Goryachev, S.; Hyeoneui, K.; Keselman, A.; Rosendale, D. (2007). "Making texts in electronic health records comprehensible to consumers: a prototype translator". American Medical Informatics Association Annual Symposium Proceedings 2007: 846-50. PMC PMC2655860. PMID 18693956. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC2655860.
- ↑ 40.0 40.1 Shcherbatykh, I.; Holbrook, A.; Thabane, L.; Dolovich, L. (2008). "Methodologic issues in health informatics trials: the complexities of complex interventions". Journal of the American Medical Informatics Association 15 (5): 575-80. doi:10.1197/jamia.M2518. PMC PMC2528041. PMID 18579839. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC2528041.
- ↑ 41.0 41.1 41.2 41.3 41.4 41.5 Grant, R.W.; Wald, J.S.; Schnipper, J.L.; Gandhi, T.K.; Poon, E.G.; Orav, E.J.; William, D.H.; Volk, L.A.; Middleton, B. (2008). "Practice-linked online personal health records for type 2 diabetes mellitus: a randomized controlled trial". Archives of Internal Medicine 168 (16): 1776-1782. doi:10.1001/archinte.168.16.1776. PMC PMC3829635. PMID 18779465. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC3829635.
- ↑ 42.0 42.1 42.2 42.3 42.4 42.5 42.6 Holbrook, A.; Thabane, L.; Keshavjee, K.; Dolovich, L.; Bernstein, B.; Chan, D.; Troyan, S.; Foster, G.; Gerstein, H. (2009). "Individualized electronic decision support and reminders to improve diabetes care in the community: COMPETE II randomized trial". Canadian Medical Association Journal 181 (1–2): 37-44. doi:10.1503/cmaj.081272. PMC PMC2704409. PMID 19581618. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC2704409.
- ↑ Brennan, P.F.; Downs, S.; Casper, G. (2010). "Project HealthDesign: rethinking the power and potential of personal health records". Journal of Biomedical Informatics 43 (5): S3–5. doi:10.1016/j.jbi.2010.09.001. PMID 20937482.
- ↑ 44.0 44.1 44.2 Ventres, W.; Kooienga, S.; Vuckovic, N.; Marlin, R.; Nygren, P.; Stewart, V. (2006). "Physicians, patients, and the electronic health record: an ethnographic analysis". Annals of Family Medicine 4 (2): 124-131. doi:10.1370/afm.425. PMC PMC1467009. PMID 16569715. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC1467009.
- ↑ 45.0 45.1 Weitzman, E.R.; Kaci, L.; Mandl, K.D. (2009). "Acceptability of a personally controlled health record in a community-based setting: implications for policy and design". Journal of Medical Internet Research 11 (2): e14. doi:10.2196/jmir.1187. PMC PMC2762802. PMID 19403467. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC2762802.
- ↑ 46.0 46.1 46.2 46.3 46.4 46.5 46.6 Kannry, J.; Beuria, P.; Wang, E.; Nissim, J. (2012). "Personal health records: meaningful use, but for whom?". Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine 79 (5): 593-602. doi:10.1002/msj.21334. PMID 22976365.
- ↑ 47.0 47.1 Krist, A.H.; Woolf, S.H. (2011). "A vision for patient-centered health information systems". The Journal of the American Medical Association 305 (3): 300-301. doi:10.1001/jama.2010.2011. PMID 21245186.
- ↑ Gibbons, M.C.; Wilson, R.F.; Samal, L.; Lehmann, C.U.; Dickersin, K.; Lehmann, H.P.; Aboumatar, H.; Finkelstein, J.; Shelton, E.; Sharma, R.; Bass, E.B. (October 2009). "Impact of Consumer Health Informatics Applications" (PDF). U.S. Department of Health and Human Services. pp. 546. http://www.ahrq.gov/research/findings/evidence-based-reports/chiapp-evidence-report.pdf.
- ↑ Kim, J.; Jung, H.; Bates, D.W. (2011). "History and trends of "personal health record" research in pubmed". Healthcare Informatics Research 17 (1): 3-17. doi:10.4258/hir.2011.17.1.3. PMC PMC3092992. PMID 21818452. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=PMC3092992.
- ↑ Certification Commission for Healthcare Information Technology (15 July 2008). "Recommendations of the PHR advisory task force: certification of PHRs" (PDF). https://hitanalyst.files.wordpress.com/2008/07/cchitphratf.pdf.
- ↑ 51.0 51.1 Pyper, C.; Amery, J.; Watson, M.; Crook, C. (2004). "Access to electronic health records in primary care - a survey of patients' views". Medical Science Monitor 10 (11): 17–22. PMID 15507869.
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. The authors also included reference item 40 (Kupchunas W. Personal health record new opportunity for patient education. Orthopaedic Nursing. 2006;26(3):185-191.) in their references but never used it as a citation in the text. As such, it has been omitted.
Finally, in the PDF a couple of references were placed out of order by appearance, particularly references nine and ten in the introduction. Additionally, reference 40 is unused and removed. 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.