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Personal Health Records

Personal Health Records
Preamble

Personal Health Records (PHRs) are "electronic application[s] through which individuals can maintain and manage their health information (and that of others for whom they are authorized) in a private, secure, and confidential environment" [US HHS]. They have been under development since the mid- to late 1990s. One of the earliest PHR projects was PCASSO (Patient-Centered Access to Secure Systems Online) by the Science Applications International Corporation and the University of California, San Diego.

Online Personal Health Records are seen as offering portability, interoperability and security, and help meet many western governments' aims of personalizing care and increasing patient participation in the way decisions are made regarding their care. Personal Health Records are coming close to the top of the healthcare technology agenda in many countries. In the USA they form a significant part of the government's national Health IT strategy and have been implemented by various regional and local health care systems and providers (e.g eCleveland Clinic MyChart®; PAMFOnline at Palo Alto Medical Foundation (which is also based on MyChart® from Epic Systems Corporation)). In Europe, they are being developed by various national health information technology programmes e.g. in France, England and the Czech Republic. They are also now being made available to the public (and authorised health professionals) in increasing numbers by commercial vendors and other organisations, often at no cost (see links below).

Definitions
The Markle Foundation Connecting for Health initiative provide the following (2003) PHR definition (which will no doubt require modification with time, changing requirements and technical developments):

"The Personal Health Record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. Individuals access their PHRs via the Internet, using state-of-the-art security and privacy controls, at any time and from any location. Family members, doctors or school nurses can see portions of a PHR when necessary and emergency room staff can retrieve vital information from it in a crisis. People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. PHR connects each of us to the incredible potential of modern health care and gives us control over our own information."

Endsley et al have identified three types of PHR that have been developed in recent years:

  1. "A provider-owned and provider-maintained digital summary of clinically relevant health information made available to patients"
  2. "A patient-owned software program that lets individuals enter, organize and retrieve their own health information and that captures the patient's concerns, problems, symptoms, emergency contact information, etc."
  3. "A portable, interoperable digital file in which selected, clinically relevant health data can be managed, secured and transferred. Platforms for portable PHRs include smart cards, personal digital assistants, cellular phones and USB-compatible ... devices that can be plugged into almost any computer."
In summary, there are currently four main PHR platforms:
  • EHR-linked PHRs (such as MyChart)
  • Password-protected web-based applications
  • USB-based tools (E-HealthKEY, CapMed Personal HealthKey™ ...)
  • CD-ROM (e.g. CapMed Personal Health Record™)
  • .
Benefits of PHRs
  • Consumer-focused; patient-focused.
  • "Empower" patients to be more involved in their own healthcare decisions; promote self-care and responsibilty for their own health status
  • Promote preventive self-care
  • Support self-care of chronic diseases
  • Help improve patient health data validity and quality control
  • Improve patient satisfaction as well as health
  • Support patient safety initiatives
  • Support patient and health services mobility and shared care
  • Provide ready access to emergency patient data
  • Support cooperation and shared care where health services may be fragmented or far apart
  • Provide content to help populate a life-long EHR
  • Can help streamline communications between citizens and healthcare providers.
Issues
  • Security, confidentiality, privacy, authentication of user(s)
  • Accuracy of data - population of fields, maintenance
  • Integration with other electronic patient data systems used by health professionals - data update, maintenance etc.
  • Ownership of data
  • Extent of shareability of data across systems and across borders
  • Back-up issues in case of loss etc. of data stored on USB devices
  • Will consumers pay for PHRs directly (where they do not form an integral point of a health system which provides them free of charge) ?
References

Markle Foundation, Connecting for Health. The Personal Health Working Group Final Report, July 1, 2003

[]   [Markle Foundation, Connecting for Health]

Partly a report on the results of an online survey on consumer attitudes toward a Personal Health Record (PHR); also describes key characteristics and benefits of electronic personal health records

" The PHR is a single, person-centered system designed to track and support health activities across one’s entire life experience; it is not limited to a single organization or a single health care provider. The PHR differs from the electronic medical record (EMR) - a computerized platform for managing detailed medical information collected during a hospital stay or in a doctor’s office. EMRs usually contain a health history, doctors’ notes and laboratory and radiology results and are generally owned by and limited to the information collected by one doctor or hospital. The EMR rarely contains information provided by the patient. Not all doctors use electronic medical records and many different systems exist, so when people change doctors or move to a new city their personal health information does not move with them. Health professionals are now adopting new data standards that will make transfer of clinical data between doctors more common, but even connecting different doctors’ medical record systems will not tie together all the important health information for each patient. An EMR might indicate that a doctor wrote a prescription, but it would not show whether the patient filled the prescription, took the medication or if the treatment worked. EMRs can supply information to PHRs, but the PHR will also capture information from many EMRs and directly from patients.

"The PHR has several distinct attributes:

  • "Each person controls his or her own PHR. Individuals decide which parts of their PHR can be accessed, by whom and for how long.
  • PHRs contain information from one’s entire lifetime.
  • PHRs contain information from all health care providers.
  • PHRs are accessible from any place at any time.
  • PHRs are private and secure.
  • PHRs are “transparent.” Individuals can see who entered each piece of data, where it was transferred from and who has viewed it.
  • PHRs permit easy exchange of information with other health information systems and health professionals. "

  • AHIMA e-HIM Personal Health Record Work Group. The Role of the Personal Health Record in the EHR. Journal of AHIMA 76, no.7 (July-August 2005): 64A-D.

    []   [AHIMA]

    " Health information technology will be integral to the US transformation to a safer, more efficient, consumer-driven healthcare system, and the personal health record (PHR) will be a valuable asset to individuals and families, enabling them to integrate and manage their healthcare information through secure, standardized tools. It is imperative that patients, healthcare providers, and payers work together to develop a PHR model. Establishing a common data set is a vital starting point. [...] AHIMA recently convened an e-HIM™ work group to focus on the PHR. The group studied emerging activity occurring around the PHR. From this research, the work group formulated a definition of the PHR, including its attributes. The work group also recommended the minimum common data elements to be included in a PHR, emerging HIM roles, and consumer education and tools to promote the PHR. Finally, the work group performed an environmental scan of the current industry activity within the United States, including the various products currently available to consumers. Descriptions of this work follow. "

    The Value of Personal Health Records A Joint Position Statement for Consumers of Health Care by American Health Information Management Association American Medical Informatics Association, July 2006

    []   [AMIA]

    " The American Health Information Management Association (AHIMA) and the American Medical Informatics Association (AMIA) advocate empowering individuals to manage their healthcare through the use of a personal health record (PHR). The PHR is a tool for collecting, tracking and sharing important, up-to-date information about an individual’s health or the health of someone in their care. Using a PHR will help people make better health decisions and improves quality of care by allowing them to access and use information needed to communicate effectively with others about their healthcare. "

    Endsley S, Kibbe DC, Linares A, Colorafi K. An introduction to personal health records. Fam Pract Manag. 2006 May;13(5):57-62.

    [PubMed]   [Fam Pract Manag]

    [Concluding remarks:] " Because family physicians are patient-centric by training and philosophy, they are uniquely able to embrace the personal health record technologies as a redesign of their practices. In fact, the movement toward PHRs is firmly embedded in the New Model of family medicine to the extent that the CCR standard permits widespread sharing and exchange of summary health information between PHRs and EHRs - and between patients and their "personal medical home" - for the purposes of education, quality improvement, enhancement of patient safety and gains in both patient convenience and office efficiency. Even as electronic health records are slowly expanding in the medical community, our patients are being offered their own form of health connectivity that can improve their safety and quality of care. "

    Tang PC, Lansky D. The missing link: bridging the patient-provider health information gap. Health Aff. 2005; 24:1290-1295.

    [PubMed]   []

    " Widespread adoption of information technology is now regarded as a pathway to improving health care and achieving the Institute of Medicine's highly regarded six aims for redesigning care. Achieving these aims requires fresh approaches to health system design, including continuous healing relationships between physicians and patients and provision of tools to help patients be more active participants in their own care. Personal health records (PHRs) might allow patients and providers to develop new ways of collaborating and provide the basis for broader transformation of the health care system. Federal policies can be key catalysts in accelerating PHR development and adoption. "

    Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6.

    [PubMed]   []

    " Recently there has been a remarkable upsurge in activity surrounding the adoption of personal health record (PHR) systems for patients and consumers. The biomedical literature does not yet adequately describe the potential capabilities and utility of PHR systems. In addition, the lack of a proven business case for widespread deployment hinders PHR adoption. In a 2005 working symposium, the American Medical Informatics Association's College of Medical Informatics discussed the issues surrounding personal health record systems and developed recommendations for PHR-promoting activities. Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become active participants in their own care. When PHRs are integrated with electronic health record systems, they provide greater benefits than would stand-alone systems for consumers. This paper summarizes the College Symposium discussions on PHR systems and provides definitions, system characteristics, technical architectures, benefits, barriers to adoption, and strategies for increasing adoption. "

    Kimmel Z, Greenes RA, Liederman E. Personal health records. J Med Pract Manage. 2005 Nov-Dec;21(3):147-52.

    [PubMed]   []

    " Nationwide, momentum is growing to provide patients with computer tools called personal health records (PHRs). These allow patients to participate in their own healthcare management by viewing, editing, or discussing their own medical data. Historically, PHRs targeted consumers, but contemporary PHRs are increasingly aimed at providers and payers. This article reviews the types of PHRs that are currently available, discusses the PHR functionalities that offer the best value for a medical practice, and provides strategies for making purchasing decisions. "

    Wuerdeman L, Volk L, Pizziferri L et al. How accurate is information that patients contribute to their Electronic Health Record? AMIA Annu Symp Proc. 2005;:834-8.

    [PubMed]   []

    " Increased patient interaction with medical records and the advent of personal health records (PHRs) may increase patients' ability to contribute valid information to their Electronic Medical Record (EHR) ... Patient input through a secure connection, whether it be a patient portal or PHR, will integrate many aspects of a patient's health and may help lessen the information gap between patients and providers. Patient reported data should be considered a viable method of enhancing documentation but will not likely be as complete and accurate as more comprehensive data-exchange between providers. "

    Powell J, Fitton R, Fitton C. Sharing electronic health records: the patient view. Inform Prim Care. 2006;14(1):55-7.

    [PubMed]   []

    " The introduction of a national electronic health record system to the National Health Service (NHS) has raised concerns about issues of data accuracy, security and confidentiality. The primary aim of this project was to identify the extent to which primary care patients will allow their local electronic record data to be shared on a national database. The secondary aim was to identify the extent of inaccuracies in the existing primary care records, which will be used to populate the new national Spine. Fifty consecutive attenders to one general practitioner were given a paper printout of their full primary care electronic health record. Participants were asked to highlight information which they would not want to be shared on the national electronic database of records, and information which they considered to be incorrect. There was a 62% response rate (31/50). Five of the 31 patients (16%) identified information that they would not want to be shared on the national record system. The items they identified related almost entirely to matters of pregnancy, contraception, sexual health and mental health. Ten respondents (32%) identified incorrect information in their records (some of these turned out to be correct on further investigation). The findings in relation to data sharing fit with the commonly held assumption that matters related to sensitive or embarrassing issues, which may affect how the patient will be treated by other individuals or institutions, are most likely to be censored by patients. Previous work on this has tended to ask hypothetical questions concerning data sharing rather than examine a real situation. A larger study of representative samples of patients in both primary and secondary care settings is needed to further investigate issues of data sharing and consent. "

    Ramsaroop P, Ball MJ. The "bank of health". A model for more useful patient health records. MD Comput. 2000 Jul-Aug;17(4):45-8.

    [PubMed]   []

    " "

    References: PHR systems and development projects

    Tang PC, Black W, Buchanan J et al. PAMFOnline: integrating EHealth with an electronic medical record system. AMIA Annu Symp Proc. 2003;:649-53.

    [PubMed]   [PubMed Central]

    " The Institute of Medicine stressed the need for continuous healing relationships, yet the delivery of health care has traditionally been confined to the physician office or hospital. We implemented an eHealth application tightly integrated with our electronic medical record system that provides patients with a convenient, continuously available communication channel to their physician's office. Patients can view summary data from their medical record, including the results of diagnostic tests, and request medical advice, prescription renewals, appointments, or updates to their demographic information. We have found that patients embrace this new communication channel and are using the service appropriately. Patients especially value electronic messaging with their physicians and timely access to their test results. While initially concerned about an increase in work, physicians have found that use of electronic messaging can be an efficient method for handling non-urgent communication with their patients. Online tools for patients, when integrated with an electronic medical record, can provide patients with better access to health information, improve patient satisfaction, and improve operational efficiency. "

    Weingart SN, Rind D, Tofias Z, Sands DZ. Who uses the patient internet portal? The PatientSite experience. J Am Med Inform Assoc. 2006 Jan-Feb;13(1):91-5.

    [PubMed]   []

    " OBJECTIVE: Although the patient Internet portal is a potentially transformative technology, there is little scientific information about the demographic and clinical characteristics of portal enrollees and the features that they access. DESIGN: We describe two pilot studies of a comprehensive Internet portal called PatientSite. These pilots include a prospective one-year cohort study of all patients who enrolled in April 2003 and a case-control study in 2004 of enrollees and nonenrollees at two hospital-based primary care practices. MEASUREMENTS: The cohort study tracked patient enrollment and features in PatientSite that enrollees accessed, such as laboratory and radiology results, prescription renewals, appointment requests, managed care referrals, and clinical messaging. The case-control study used medical record review to compare the demographic and clinical characteristics of 100 randomly selected PatientSite enrollees and 100 nonenrollees. RESULTS: PatientSite use grew steadily after its introduction. New enrollees logged in most frequently in the first month, but 26% to 77% of the cohort continued to access the portal at least monthly. They most often examined laboratory and radiology results and sent clinical messages to their providers. PatientSite enrollees were younger and more affluent and had fewer medical problems than nonenrollees. CONCLUSION: Expanding the use of patient portals will require an understanding of obstacles that prevent access for those who might benefit most from this technology. "

    Cimino JJ, Patel VL, Kushniruk AW. The patient clinical information system (PatCIS): technical solutions for and experience with giving patients access to their electronic medical records. Int J Med Inform. 2002 Dec 18;68(1-3):113-27.

    [PubMed]   []

    " As health records evolve into electronic form, increasing demand is being made to provide patients with access to them. We sought to study the character and impact of such access to determine how patients use such records, what cognitive effects it has on them, and how it affects their relationship with their health care providers. We created the Patient Clinical Information System (PatCIS) to interface with the clinical data repository at New York Presbyterian Hospital (NYPH) to allow patients to add to and review their medical data. We also provided educational resources and automated advice programs. We provided access to the system to thirteen subjects over a 36-month period and reviewed their activities in the system's usage log. We also collected data via questionnaire and telephone interview. We collected data for a total of 223 patient months. We found that patients varied in their use of the system, from once a month or less to one or more times per day. All patients primarily used the system to review laboratory results. Both they and their physicians believed that use of the system enhanced the patients' understanding of their conditions and improved their communication with their physicians. There were no adverse events encountered during the study. "

    Masys D, Baker D, Butros A, Cowles KE. Giving patients access to their medical records via the Internet: the PCASSO experience. J Am Inform Assoc. 2002;9:181-191.

    [PubMed]   [PubMed Central]

    " Objective: The Patient-Centered Access to Secure Systems Online (PCASSO) project is designed to apply state-of-the-art-security to the communication of clinical information over the Internet. Design: The authors report the legal and regulatory issues associated with deploying the system, and results of its use by providers and patients. Human subject protection concerns raised by the Institutional Review Board focused on three areas—unauthorized access to information by persons other than the patient; the effect of startling or poorly understood information; and the effect of patient access to records on the record-keeping behavior of providers. Measurements: Objective and subjective measures of security and usability were obtained. Results: During its initial deployment phase, the project enrolled 216 physicians and 41 patients; of these, 68 physicians and 26 patients used the system one or more times. The system performed as designed, with no unauthorized information access or intrusions detected. Providers rated the usability of the system low because of the complexity of the secure login and other security features and restrictions limiting their access to those patients with whom they had a professional relationship. In contrast, patients rated the usability and functionality of the system favorably. Conclusion: High-assurance systems that serve both patients and providers will need to address differing expectations regarding security and ease of use. "

    Ueckert F, Goerz M, Ataian M, Tessmann S, Prokosch HU. Empowerment of patients and communication with health care professionals through an electronic health record. Int J Med Inform. 2003 Jul;70(2-3):99-108.

    [PubMed]   []

    " OBJECTIVE: The aim of this project was to design and develop a personal electronic health record (EHR) in order to support patient empowerment and additionally to enhance their communication and information exchange with health professionals through this EHR. METHOD: The functionality of a personal Electronic Healthcare Record (EHR) may vary from a simple web-based interface for interactive data entry and data review up to a much more powerful system additionally supporting electronic data/document communication between clinical information systems of primary care practitioners or hospitals and even reminder based support for the empowered citizen, to actively take care of his health, based on relevant disease management programs. It is one means to support patient empowerment, additionally supported by tools for building a patient community. Since storage and communication of data in an EHR comprises sensible personal health data, each of those functions needs specific security and access management requirements to be considered and implemented. RESULT: Clinical pilot projects are already done or under development. "

    Kim MI, Johnson KB. Personal health records: evaluation of functionality and utility. J Am Med Inform Assoc. 2002 Mar-Apr;9(2):171-80.

    [PubMed]   []

    " OBJECTIVES: Web-based applications have been developed that allow patients to enter their own information into secure personal health records. These applications are being promoted as a means of providing patients and providers with universal access to updated medical information. The authors evaluated the functionality and utility of a selection of personal health records. DESIGN: A targeted search strategy was used to identify eleven Web sites promoting different personal health records. Specific criteria related to the entry and display of data elements were developed to evaluate the functionality of each PHR. Information abstracted from an actual case was used to create a series of representative PHRs. Output generated for review was evaluated to assess the accuracy and completeness of clinical information related to the diagnosis and treatment of specific disorders. RESULTS: The PHRs selected for review employed data entry methods that limited the range and content of patient-entered information related to medical history, medications, laboratory tests, diagnostic studies, and immunizations. Representative PHRs created with information abstracted from an actual case displayed varying amounts of information at basic and comprehensive levels of representation. CONCLUSIONS: Currently available PHRs demonstrate limited functionality. The data entry, validation, and information display methods they employ may limit their utility as representations of medical information. "

    links
     bullet  Personal health record on Wikipedia®  bullet  Personal Health Record on www.informatics-review.com/wiki  bullet  Personal Health Records And Sharing Patient Information - no. 7 of a series of reports, commissioned by NHS Connecting for Health, on IT in healthcare by Prof. Denis J. Protti [OC]  bullet  PCASSO (University of California, San Diego School of Medicine)  bullet  PING - "Patient-Driven, Open-Source Digital Health Records Platform" [OC]  bullet  Continuity of Care Record (CCR) standard used in certain PHRs [OC] USA  CapMed PHR and Personal HealthKey™ [OC] USA  iHealthRecord [OC] USA  Cerner IQHealth [OC] France  Medebox [OC] USA  myPHR [OC] USA  E-HealthKEY (subscription service) [OC] USA  Cerner Online Diabetes Tool - personal health record for diabetes Germany  LifeSensor from InterComponentWare, Germany [OC] Czech Republic  iZIP - national personal health record for patients and healthcare professionals in the Czech Republic Australia  HotHealth demonstration - computerised personal health management system from Global Health, Australia [OC] USA  HealthFrame - Personal Health Record from Records For Living, Inc., USA [OC] USA   AboutMyHealth: Personal Health Record and portal to health information from GE Medical Systems [OC] England  HealthSpace (for NHS England patients)

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    Entry on OpenClinical: 28 August 2006
    Last main update: 20 September 2006
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