Personal health record

A personal health record, or PHR, is a health record where health data and information related to the care of a patient is maintained by the patient.^[1] This stands in contrast to the more widely used electronic medical record, which is operated by institutions (such as hospitals) and contains data entered by clinicians or billing data to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results, data from devices such as wireless electronic weighing scales or collected passively from a smartphone.

Definition

The term “personal health record” is not new. The earliest mention of the term was in an article indexed by PubMed dated June 1978,^[2] and even earlier in 1956 reference is made to a personal health log.^[3] However, most scientific articles written about PHRs have been published since 2000.

The term "PHR" has been applied to both paper-based and computerized systems; current usage usually implies an electronic application used to collect and store health data. In recent years, several formal definitions of the term have been proposed by various organizations.^[4][5][6]

It is important to note that PHRs are not the same as electronic health records (EHRs). The latter are software systems designed for use by health care providers. Like the data recorded in paper-based medical records, the data in EHRs are legally mandated notes on the care provided by clinicians to patients. There is no legal mandate that compels a consumer or patient to store her personal health information in a PHR.

PHRs can contain a diverse range of data, including but not limited to:

• allergies and adverse drug reactions
• chronic diseases
• family history
• illnesses and hospitalizations
• imaging reports (e.g. X-ray)
• laboratory test results
• medications and dosing
• prescription record
• surgeries and other procedures
• vaccinations
• and Observations of Daily Living (ODLs)

There are two methods by which data can arrive in a PHR.^[1] A patient may enter it directly, either by typing into fields or uploading/transmitting data from a file or another website. The second is when the PHR is tethered to an electronic health record, which automatically updates the PHR. Not all PHRs have the same capabilities, and individual PHRs may support one or all of these methods.^[1]

In addition to storing an individual's personal health information, some PHRs provide added-value services such as drug-drug interaction checking, electronic messaging between patients and providers, managing appointments, and reminders.^[7]

Benefits

PHRs grant patients access to a wide range of health information sources, best medical practices and health knowledge. All of an individual’s medical records are stored in one place instead of paper-based files in various doctors’ offices. Upon encountering a medical condition, a patient’s health information is only a few clicks away.

Moreover, PHRs can benefit clinicians. PHRs offer patients the opportunity to submit their data to their clinicians' EHRs. This helps clinicians make better treatment decisions by providing more continuous data.^[1]

PHRs have the potential to help analyze an individual’s health profile and identify health threats and improvement opportunities based on an analysis of drug interaction, current best medical practices, gaps in current medical care plans, and identification of medical errors. Patient illnesses can be tracked in conjunction with healthcare providers and early interventions can be promoted upon encountering deviation of health status. PHRs also make it easier for clinicians to care for their patients by facilitating continuous communication as opposed to episodic. Eliminating communication barriers and allowing documentation flow between patients and clinicians in a timely fashion can save time consumed by face-to-face meetings and telephone communication. Improved communication can also ease the process for patients and caregivers to ask questions, to set up appointments, to request refills and referrals, and to report problems. Additionally, in the case of an emergency a PHR can quickly provide critical information to proper diagnosis or treatment.

Architecture

Like other health information technology, PHR architecture of has three main components:

Data

The information collected, stored, analyzed, and exchanged by the PHR.

Examples: medical history, laboratory results, imaging studies, medications

Infrastructure

The platform that handles data storage, processing, and exchange.

Examples: stand-alone software programs or websites, provider- or payer-connected (tethered) websites

Applications

The information exchange, data analysis, and content delivery capabilities of the system.

Examples: scheduling appointments, medication refill or renewal, decision aids, and patient education materials.^[8]

Various architectural models have different costs and benefits. Likewise, stand-alone, provider-tethered, and payer-tethered PHRs have different advantages and disadvantages for patients related to their individual circumstances. Such differences are among the priority areas in PHR research.^[8] As PHRs may play key role in advancing health information exchange, interoperability with other health IT systems is an important consideration for PHR architecture.^[8] If PHRs serve only as a repository for an individual’s health information, it is unlikely that individuals who are not highly motivated will maintain their health records and find PHRs to be useful.

Delivery platforms

One of the principal distinguishing features of a PHR is the platform by which it is delivered. The types of platforms include: paper, electronic device, and web.

Paper

Personal health information is recorded and stored in paper format. Printed laboratory reports, copies of clinic notes, and health histories created by the individual may be parts of a paper-based PHR. This method is low cost, reliable, and accessible without the need for a computer or any other hardware. Probably the most successful paper PHR is the hand-held pregnancy record, developed in Milton Keynes in the mid-1980s^[9] and now in use throughout the United Kingdom. These include the Scottish Woman-Held Maternity Record,^[10] All Wales Maternity Record,^[11] and Perinatal Institute notes.^[12]

Paper-based PHRs may be difficult to locate, update, and share with others. Paper-based PHRs are subject to physical loss and damage, such as can occur during a natural disaster. Paper records can also be printed from most electronic PHRs. However, Fawdry et al. have shown that paper records are extremely flexible and do have distinct advantages over rigid electronic systems.^[13]

Electronic devices

Personal health information is recorded and stored in personal computer-based software that may have the capability to print, backup, encrypt, and import data from other sources such as a hospital laboratory. The most basic form of a PC-based PHR would be a health history created in a word-processing program. The health history created in this way can be printed, copied, and shared with anyone with a compatible word processor.

PHR software can provide more sophisticated features such as data encryption, data importation, and data sharing with health care providers. Some PHR products allow the copying of health records to a mass-storage device such as a CD-ROM, DVD, smart card,^[14] or USB flash drive.^[15][16]

PC-based PHRs are subject to physical loss and damage of the personal computer and the data that it contains. Some other methods of device solution may entail cards with embedded chips containing health information that may or may not be linked to a personal computer application or a web solution.

Web applications

Web-based PHR solutions are essentially the same as electronic device PHR solutions, however, web-based solutions have the advantage of being easily integrated with other services. For example, some solutions allow for import of medical data from external sources. Solutions including HealthVault, and PatientsLikeMe allow for data to be shared with other applications or specific people. Mobile solutions often integrate themselves with web solutions and use the web-based solution as the platform.

A large number of companies have emerged to provide consumers the opportunity to develop online PHRs. Some have been developed by non-profit organizations, while others have been developed by commercial ventures. These web-based applications allow users to directly enter their information such as diagnosis, medications, laboratory tests, immunizations and other data associated with their health. They generate records that can be displayed for review or transmitted to authorized receivers.

Despite the need for PHRs and the availability of various online PHR providers, there has not been wide adoption of PHR services. In fact, Google, being among the most innovative companies in the world, discontinued its PHR service called Google Health on January 12, 2012. The reason cited for shutting down Google Health was that the service did not translate from its limited usage into widespread usage in the daily health routines of millions of people.^[17]

An emerging standard from HL7, Fast Healthcare Interoperability Resources (FHIR), is designed to make it easier for developers of personal health record applications to access relevant medical records.^[18]

EHRs, PHRs, patient portals and UHRs

The terms electronic health records, personal health records, and patient portals are not always used correctly. The generally agreed upon definition of these terms relates mainly to the ownership of the data. Once data is in a PHR it usually owned and controlled by the patient. Most EHRs, however, are the property of the provider, although the content can be co-created by both the provider and patient. A patient has a legal right in most states to request their healthcare data and under recent USA legislation those providers using a certified EHR will be required to provide an electronic copy as well. In the UK, according to the governments's information strategy for the NHS every primary care practice in England will have to offer patients online access to their care records by 2015.^[19] In 2012, only 1% did so.^[20] Electronic health records and electronic medical records contain clinical data created by and for health professionals in the course of providing care. The data is about the patient but the data resides in a health care provider's system. The patient portal is typically defined as a view into the electronic medical records. In addition, ancillary functions that support a health care provider's interaction with a patient are also found in those systems e.g. prescription refill requests, appointment requests, electronic case management, etc. Finally, PHRs are data that resides with the patient, in a system of the patient's choosing. This data may have been exported directly from an EMR, but the point is it now resides in a location of the patient's choosing. Access to that information is controlled entirely by the patient.

A new concept being discussed is the UHR or "universal health record",^[21] which would be a patient-centered and patient-controlled body of information that could be shared in a granular way with particular health care providers at the patient's discretion in support of the patient's work with health care providers. This project would enlist open source contributions and enhancements from developers, with particular emphasis on supporting patient expectations of privacy and responsible patient control of private health information (PHI). It is anticipated that effective implementation of one or more "open source" approaches to the UHR would benefit both providers and patients, including providing more cost-effective solutions to currently difficult problems including entry/verification/update of personal health data, enabling responsible patient-controlled granular release of PHI, and supporting interoperability and effective collaboration of patients and physicians across disparate EHR/PHR platforms.

While PHRs can help patients keep track of their personal health information, the value of PHRs to healthcare organizations is still unclear.^[22]

In public health

PHRs have the ability to benefit the public health sector by providing health monitoring, outbreak monitoring, empowerment, linking to services, and research. PHRs can give consumers the potential to play a large role in protecting and promoting the public's health.^[23]

Barriers to adoption

Barriers to the adoption of PHRs include economic, technological, behavioral, and organizational issues, and barriers exist at both the environmental and individual levels.^[1] Limited access to computers and Internet access among low-income populations, known as the digital divide, is one such barrier.^[24]

Functional limitations

Despite the need to centralize patient information, PHR adoption has been very low. In 2002, a study was carried out in an effort to assess the functionality and utility of online PHRs. An abstraction from real-life case of a patient suffering from a thyroid condition was utilized to create various online PHRs. The outputs generated were examined for accuracy and completeness of clinical information. A team of researchers identified 19 websites offering different versions of PHRs. To evaluate the PHRs, researchers identified criteria based on their promotional advertisements. Ideally, centralized PHRs should help patients relate accurate history during clinical encounters, check for drug interactions, eliminate unnecessary duplication of laboratory tests and diagnostic studies, and serve as an information hub for patients’ health management.^[25] An analysis of web-based PHR applications showed that most websites did provide access to personal medical information, however each demonstrated limited capacity in a different way:

From the 19 sites examined, four were found to be specific to certain diseases only and were therefore excluded from the study. Another four were excluded for reasons such as recurrent technical problems or connections to a specific hospital’s information system. The remaining 11 sites did not provide patients with sufficient guidance as to how they should enter personal data. Some of the sites allowed patients to select medical conditions from categorized lists which did not cover the patients’ complete health condition while others allowed free text entry. To formulate medication history, sites that required patients to choose medication from lists requested them to enter a wide range of descriptive information for each medication such as prescribed dose, administration frequency, start date, name of pharmacy that issued the medication and name of provider that prescribed the medication. With respect to laboratory tests, only two allowed patients to import results from outside sources. From these two sites, only one was functional. Not every site allowed patients to enter insurance coverage information. Majority of the sites required patients to enter date and results of diagnostic tests.^[25]

Most people do not keep record of minute details of their healthcare experiences and therefore find it difficult to make use of web-based PHRs. Overall, the sites selected for evaluation offered limited functionality to the general public. Low adoption of web-based PHRs can be a direct result of limitations in these applications’ data entry, validation and information display methods. PHR development should be guided by ample patient-oriented research in future.

Promotion

There are instances where the use of a PHR would be beneficial to patients and may, therefore, override privacy concerns. Stage 1 of meaningful use of certified EHR systems requires that practices provide at least 50 percent of their patients with a copy of their health records upon request. While this can be accomplished through a patient portal, this function can also be part of a larger system such as Kaiser Permanente's My Health Manager—a PHR that is integrated into the health system's patient portal. By June 2012, 3.9 million Kaiser members were enrolled in this program. For the first half of 2012, members viewed 2.5 million lab results, sent 1 million e-mails to physicians, and scheduled 230,000 appointments monthly, demonstrating ease of use and convenience.^[26]

Privacy and security

One of the most controversial issues for PHRs is how the technology could threaten the privacy of patient information. Network computer break-ins are becoming more common,^[27] thus storing medical information online can cause fear of the exposure of health information to unauthorized individuals. In addition to height, weight, blood pressure and other quantitative information about a patient's physical body, medical records can reveal very sensitive information, including fertility, surgical procedures, emotional and psychological disorders, and diseases, etc. Various threats exist to patient information confidentiality, some of which are listed below:

• Accidental disclosure: During multiple electronic transfers of data to various entities, medical personnel can make innocent mistakes to cause disclosure of data.
• Insider curiosity: Medical personnel may misuse their access to patient information out of curiosity or for another purpose.
• Insider subordination: Medical personnel may leak out personal medical information for spite, profit, revenge, or other purposes.
• Uncontrolled secondary usage: Those who are granted access to patient information solely for the purpose of supporting primary care can exploit that permission for reasons not listed in the contract, such as research.
• Outsider intrusion: Former employees, network intruders, hackers, or others may access information, damage systems or disrupt operations

Unlike paper-based records that require manual control, digital health records are secured by technological tools.^[28] identifies three general classes of technological interventions that can improve system security:

• Deterrents – These depend on the ethical behavior of people and include controls such as alerts, reminders, and education of users. Another useful form of deterrents has been Audit Trails. The system records identity, times, and circumstances of users accessing information. If system users are aware of such a record keeping system, it will discourage them from taking ethically inappropriate actions
• Technological obstacles – These directly control the ability of a user to access information and ensure that users only access information they need to know according to their job requirements. Examples of technological obstacles include authorization, authentication, encryption, firewalls, and more.
• System management precautions – This involves proactively examining the information system to ensure that known sources of vulnerability are eliminated. Examples of this would be the use of encryption or installing antivirus software in the system

Information security concerns surrounding PHRs extend beyond technological issues. There are also ethical issues affecting the transfer of personally identifiable information in the treatment process. Only gradually are architectural requirements and information use policies becoming available such as the Privacy Rule under the U.S. Health Insurance Portability and Accountability Act (HIPAA).

See also

• Electronic health record
• mHealth
• Personal health application

References

Further reading

Books

1. Agarwal, Ritu; Angst, Corey M. (2006), "Technology-enabled transformations in U.S. health care: early findings on personal health records and individual use", in Galletta, Dennis F.; Zhang, Ping, Human-Computer Interaction and Management Information Systems: Applications, Advances in management information systems, 6 (illustrated ed.), Armonk, NY: M.E. Sharpe, pp. 357–378, ISBN 978-0-7656-1487-2, ISSN 1554-6152, OCLC 71890839 
2. Lewis, Deborah; Eysenbach, Gunther; Kukafka, Rita; Stavri, P. Zoe; Jimison, Holly B., eds. (2005). Consumer health informatics: informing consumers and improving health care. Health informatics (illustrated ed.). New York: Science & Business Media. ISBN 978-0-387-23991-0. OCLC 898862674. 

Journal Articles

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2. "New-age PHR comes with decision-support, multiple opportunities for DM". Dis Manag Advis. 12 (12): 140–2, 133. Dec 2006. PMID 17225631. 
3. Kupchunas WR (2007). "Personal health record: new opportunity for patient education". Orthop Nurs. 26 (3): 185–91; quiz 192–3. doi:10.1097/01.NOR.0000276971.86937.c4. PMID 17538475.  (subscription required)
4. "Readers' perspective. Personal health records will be widely used within five years, supplanting the need for regional health information organizations". Health Data Manag. 15 (10): 8. Oct 2007. PMID 17941305.  (subscription required)
5. Ackerman MJ (2007). "The personal health record". J Med Pract Manage. 23 (2): 84–5. PMID 17974083. 
6. Adler KG (2006). "Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services". J Med Internet Res. 8 (4): e26. doi:10.2196/jmir.8.4.e26. PMC 1794005. PMID 17213045. 
7. Burrington-Brown J, Fishel J, Fox L, et al. (Jun 2005). "Defining the personal health record. AHIMA releases definition, attributes of consumer health record". Journal of AHIMA. 76 (6): 24–5. PMID 15986557. 
8. Albright B (Feb 2007). "Prepping for PHRs. The growing trend of consumer empowerment includes the speedy rise of personal health records". Healthc Inform. 24 (2): 44, 46. PMID 17370879. 
9. American Health Information Management Association; American Medical Informatics Association (Apr 2007). "The value of personal health records. A joint position statement for consumers of healthcare by the American Health Information Management Association and the American Medical Informatics Association". Journal of AHIMA. 78 (4): 22, 24. PMID 17455841. 
10. Atkinson NL, Massett HA, Mylks C, Hanna B, Deering MJ, Hesse BW; Massett; Mylks; Hanna; Deering; Hesse (2007). "User-Centered Research on Breast Cancer Patient Needs and Preferences of an Internet-Based Clinical Trial Matching System". J Med Internet Res. 9 (2): e13. doi:10.2196/jmir.9.2.e13. PMC 1874719. PMID 17513284.  CS1 maint: Multiple names: authors list (link)
11. Ball MJ, Gold J; Gold (2006). "Banking on health: Personal records and information exchange". Journal of healthcare information management : JHIM. 20 (2): 71–83. PMID 16669591. 
12. Ball MJ, Smith C, Bakalar RS; Smith; Bakalar (2007). "Personal health records: empowering consumers". J Healthc Inf Manag. 21 (1): 76–86. PMID 17299929.  CS1 maint: Multiple names: authors list (link)
13. Burrington-Brown J, Friedman B; Friedman (Oct 2005). "Educating the public about personal health records". Journal of AHIMA. 76 (9): 94–5. PMID 16274211.  (subscription required)
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18. Edlin M (2006). "Implementing personal health records". AHIP Coverage. 47 (2): 14–6, 19. PMID 16700448. 
19. Einbinder JS, Bates DW; Bates (2007). "Leveraging information technology to improve quality and safety". Yearbook of medical informatics: 22–9. PMID 17700900. 
20. Endsley S, Kibbe DC, Linares A, Colorafi K; Kibbe; Linares; Colorafi (May 2006). "An introduction to personal health records". Fam Pract Manag. 13 (5): 57–62. PMID 16736906.  CS1 maint: Multiple names: authors list (link)
21. Foxhall K (Mar 2007). "Now it's personal. Personal health records may be next on deck for the certification process". Healthc Inform. 24 (3): 30. PMID 17427793. 
22. Friedman RH (2006). "Medicaid information technology architecture: an overview". Health Care Financ Rev. 28 (2): 1–9. PMC 4194978. PMID 17427840. 
23. Greene J (2007). "The personal health record: a key to improving health care for seniors". AHIP Coverage. 48 (5): 46–8, 51–2, 55. PMID 17941574. 
24. Halamka JD, Mandl KD, Tang PC; Mandl; Tang (2008). "Early Experiences with Personal Health Records". J Am Med Inform Assoc. 15 (1): 1–7. doi:10.1197/jamia.M2562. PMC 2274878. PMID 17947615.  CS1 maint: Multiple names: authors list (link)
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37. Moen A, Brennan PF; Brennan (2005). "Health@Home: The Work of Health Information Management in the Household (HIMH): Implications for Consumer Health Informatics (CHI) Innovations". J Am Med Inform Assoc. 12 (6): 648–56. doi:10.1197/jamia.M1758. PMC 1294036. PMID 16049230. 
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56. Winkelman WJ, Leonard KJ, Rossos PG; Leonard; Rossos (May–Jun 2005). "Patient-Perceived Usefulness of Online Electronic Medical Records: Employing Grounded Theory in the Development of Information and Communication Technologies for Use by Patients Living with Chronic Illness". J Am Med Inform Assoc. 12 (3): 306–14. doi:10.1197/jamia.M1712. PMC 1090462. PMID 15684128.  CS1 maint: Multiple names: authors list (link)
57. Wright A, Sittig DF; Sittig (Feb 2007). "Security threat posed by USB-based personal health records". Annals of Internal Medicine. 146 (4): 314–5. doi:10.7326/0003-4819-146-4-200702200-00020. PMID 17310061.  (subscription required)
58. Wolter, Julie; Friedman, Beth (Nov–Dec 2005). "Health records for the people. Touting the benefits of the consumer-based personal health record". Journal of AHIMA. 76 (10): 28–32, quiz 35–6. PMID 16333941. 
59. Woolf SH, Krist AH, Johnson RE, et al. (Mar–Apr 2006). "A Practice-Sponsored Website to Help Patients Pursue Healthy Behaviors: An ACORN Study". Annals of Family Medicine. 4 (2): 148–52. doi:10.1370/afm.522. PMC 1467008. PMID 16569718. 
60. Zeng-Treitler Q, Kim H, Goryachev S, Keselman A, Slaughter L, Smith CA; Kim; Goryachev; Keselman; Slaughter; Smith (2007). "Text characteristics of clinical reports and their implications for the readability of personal health records". Stud Health Technol Inform. 129 (Pt 2): 1117–21. PMID 17911889.  CS1 maint: Multiple names: authors list (link)

Conference Proceedings

1. Kim, E; Mayani, A; Modi, S; Kim, Y; Soh, C (2005). "Evaluation of patient-centered electronic health record to overcome digital divide". Conf Proc IEEE Eng Med Biol Soc. 1: 593–6. doi:10.1109/IEMBS.2005.1616482. ISBN 0-7803-8741-4. PMID 17282251.  (subscription required)
2. Kun, LG (Sep 2006), "Homecare and disease prevention: reviewing a decade of evolution: privacy still the biggest hurdle", Conf Proc IEEE Eng Med Biol Soc, p. 4685, doi:10.1109/IEMBS.2006.259457  |chapter= ignored (help) (subscription required)
3. Sachinopoulou, A; Leppänen, J; Kaijanranta, H; Lähteenmäki, J (2007). "Ontology-based approach for managing personal health and wellness information". Conf Proc IEEE Eng Med Biol Soc. 2007: 1802–5. doi:10.1109/IEMBS.2007.4352662. ISBN 978-1-4244-0787-3. PMID 18002328.  (subscription required)
4. Wuerdeman L, Volk L, Pizziferri L, et al. (2005). "How Accurate is Information that Patients Contribute to their Electronic Health Record?". AMIA Annu Symp Proc. 2005: 834–8. PMC 1560697. PMID 16779157. 

Other

1. America’s Health Insurance Plans. Consumer and provider focus groups on PHR. Unpublished. Jan 2005.
2. Angst, Corey M.; Agarwal, Ritu; Downing, Janelle (26 May 2006), An Empirical Examination of the Importance of Defining the PHR for Research and for Practice, Robert H. Smith School Research Paper (RHS-06-011), College Park, MD: Robert H. Smith School of Business, University of Maryland, doi:10.2139/ssrn.904611, SSRN 904611 
3. California HealthCare Foundation (November 2005), National Consumer Health Privacy Survey 2005 (Survey), conducted by Forrester Research, Oakland, CA: California HealthCare Foundation 
4. Canedy JT. SimplyWell PHR. AHIC Consumer Empowerment Workgroup Meeting 7/23/06. Jul 2006.
5. Connecting for Health. Connecting Americans to Their Health Care: A Common Framework for Networked Personal Health Information. Dec 2006.
6. Detmer D, Steen E. Learning from abroad: lessons and questions on personal health records for national policy. AARP. Mar 2006.
7. Haslmaier EF. Health care information technology – getting the policy right. Web Memo – Heritage Foundation. Jun 2006. No. 1131.
8. Markle Foundation (11 October 2005), Attitudes of Americans Regarding Personal Health Records and Nationwide Electronic Health Information Exchange (Survey), conducted by Public Opinion Strategies, New York: Markle Foundation 
9. Skewes JL. Shared Health, Inc. AHIC Consumer Empowerment Workgroup Meeting 7/23/06. Jul 2006.
10. The benefits of an internet-based personal health record versus a paper-based personal health record is expected to grow rapidly within the next three years. See interview with CEO, Glen Tullman of Allscripts http://www.ehrtv.com/allscripts-glen-tullman-mar-2010/

External links

• MedlinePlus - Personal Health Records - The U.S. National Library of Medicine & National Institutes of Health.
• Personal Health Records: What Physicians Need to Know
• Difference between Electronic Health Record (EHR). Electronic Medical Record (EMR) and Personal Health Record (PHR)