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Personal Health Records (PHRs): A valuable means for patient empowerment and quality care

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The availability of medical information on the web and extensive use of the internet has made patients much more aware of the diseases, symptoms, diagnostic tests, and treatment options. The recent scenario demands that healthcare consumers must have access to all health information and data must be reliable, accurate, and complete. The patient should be in command on how the health information is disclosed, accessed, and used. [1]

To significantly improve both personal and public health care delivery, a robust health information infrastructure was needed which leads to the adoption of electronic personal health record systems (PHRs). Electronic PHRs are a digital application to support patient-centered healthcare by making medical records and other information available digitally to patients, therefore assisting them in health self-management. [2]

The idea of PHR arose from low-technology solutions that people have used for many decades because they required a single place to record their complete medical history which must be accessible. They use to compile paper-based documents that included clinical notes provided by the healthcare providers, health histories, and laboratory reports. [3]

Nowadays, PHR technologies provide countless content-, connectivity-, and collaboration-based features and a useful program for individuals to maintain a lifelong record of clinically sourced and personally reported data from various points of medical care. [4] PHRs allow the patient to keep their health data on hand and accessible for both the consumer and provider while keeping the privacy and security of the data. PHR assist in providing tailored medical care. [5]

 

PHR: Definition, Components, and Types                                                                                                                            

PHRs are referred to as a collection of the medical documentation of an individual maintained by themselves or a caretaker, in cases where patients are unable to do so themselves. [5]

According to the Markle Foundation's Connecting for Health collaborative (a public-private endeavor working for interoperable health information infrastructures) PHR can be defined 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.” [6]

Components of the PHR are lifelong repositories that deliver a wide array of capabilities. The fully accomplished PHR will provide consumers with:

  • Management of the medical history of the subject
  • Post-medications and the ongoing medications including the alternative treatments
  • The blood type, allergies and the status of immunization
  • Information of the insurance and contact information for the patient's regular health providers
  • Past surgical and medical interventions
  • Whom to contact in an emergency
  • A clinical summary of all episodes of patient care and health services.
  • Periodic risk assessment survey results
  • Health status parameters, such as exercise, nutrition and spiritual well-being
  • Benefits and financial management resources
  • Consumer-focused health information and education
  • Decision support tools, risk management and professional advice
  • Environmental exposure and community health monitoring information
  • Optional living will and organ donation preferences [5,7]

 PHRs are broadly divided into 3 main categories:

  • Standalone PHRs: These PHRs require the consumers to manually enter their health information and medical history.
  • Tethered PHRs: These PHRs are health care institutions' owned back-end systems (patient portals) which makes them accessible to the consumers to parts of their own EHRs (Electronic Health Report).
  • Interconnected PHRs: These PHR systems offer consumers respective control over parts of their health records. Information of the patient can be filled from a variety of sources, including, insurance carriers, physician EMRs, hospital EHRs, laboratories, health plan sponsors, and pharmacies. Additionally, because of the established electronic linkages among some hospital information systems (HIS), records can easily be transferred from one provider to another. [4]

 

Steps to Get Started with PHR                                                                                                                         

To get started with PHR, the following steps are followed:

  • Assess your patients' interest in PHRs and evaluate your patients' willingness by conducting a brief survey to determine their comfort level with the usage of the Internet, their interest in different PHR features, and their readiness to pay for PHR access.
  • Evaluate your PHR options such as patient education, appointment scheduling, and secure messaging.
  • Select a PHR, prepare your practice, and allow your patients to know about your PHR service. If you are willing to purchase a patient portal for your EHR, work with your merchant to ensure that the PHR-EHR interface is fully operative. If you are providing data for patients to examine their PHR options, make a list of both recommendations and PHR resources.
  • Go live, as it will boost the system and train your patients. In the beginning, you must spend time talking to patients about their PHR. [8]

Criteria for maintenance of functionality are shown in the following table 1.

Benefits of PHRs                                                                                                                                           

PHRs have a wide variety of potential benefits for consumers, providers, and the healthcare system that are listed below:

i) Empowerment of patients: PHRs allow the patients to access their health information and supervise their health data. Patients can schedule reminders for health maintenance services via PHR. It is very useful in the management of chronic diseases. It empowers the patients to take active roles in the management and prevention of the disease. [8, 10]

ii) Improved patient-provider relationships: PHRs provide the connection between the patient and physician. It allows documentation of interactions with the patients and conveys timely interpretations of the test results. It allows direct and secure communication between patients and providers. It can make interaction with the patients faster and easier. Providers can be informed earlier if health problems arise via an open line for communication. [8, 11]

iii) Increased patient safety: PHRs identify missed services, provide drug alerts, and get important test results to the patients. It also offers patients timely access to revised medical care plans. [8]

iv) Improved quality of care: PHRs enable extensive care with better coordination between patients and the providers which improve the quality of care.         When the patients can track their health over time and have tools to manage their health, their engagement in their health and health care is enhanced. [8, 11]

v) More efficient delivery of care: PHRs avoid duplicative testing and unnecessary services. More efficient communication between patients and physicians is provided. PHRs are a vital resource for patients who are seeking additional health information to make crucial health decisions. [8, 10]

vi) Better safeguards health information privacy: PHRs are more secure than paper records as by providing patients control of access to their records, they offer higher selectiveness in sharing personal health data. Some PHRs are offered by health plans covered by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule. The HIPAA Privacy Rule applies to these PHRs and safeguards the privacy of the data in them. [8, 12]

vii) Bigger cost savings: As PHRs help avoid duplicative testing, thereby it leads to improved documentation that can decrease malpractice costs. The organization can reduce the costs by using PHR to provide patients with easy access to appointment scheduling applications and electronic prescription refill. [8, 11]

viii) Tracking disease: Patients with chronic illnesses will be able to track their diseases in conjunction with their providers, promoting earlier interventions when they encounter a problem. With the aid of advanced analytics, healthcare providers can better evaluate the risk for future chronic diseases and conditions.  [6, 13]

ix) Improved medication: Improved assessment and better clarity of medications to be taken is offered by PHRs. It includes the accurate list of medications a patient might be taking including the name of each drug, its dosage, frequency, and route of administration. This list is used to provide correct medications for patients anywhere within the health care system. [5, 14]

x) Provides reminders: Data from home-monitoring devices can be analyzed and reminds the patient of doctor's appointments. It tracks the vaccination and appointments of the patients and makes the treatment organized. It promotes earlier interventions when the patient encounters a problem. [15, 16]

xi) A powerful tool for daily health management amidst the COVID-19 pandemic: During the COVID-19 pandemic, PHRs have enabled patients to access their cross-hospital medical data and manage it without visiting hospitals, therefore minimizing the risk of infection.[17] PHRs are suitable for the daily management of physical conditions and are suitable as a symptom-tracking tool for COVID-19. Individual habits of enhancing understanding of personal health and the application of PHRs for daily health management are powerful weapons against the rapid spread of infectious diseases. [18]

 

Practical Examples of PHRs                                                                                                               

  • UMIAS (Russia) - Advanced projects in digitalization of the healthcare sector are two information platforms: the State Health Information System, which links the information systems of all healthcare organizations and makes it possible to maintain unified electronic medical records and registers of persons with certain diseases, as well as the United medical information and analytical system of Moscow (UMIAS), operating since 2012, the number of users of which is more than nine million patients and ten thousand medical workers. [19]
  • DIRAYA (Andalucia, Spain) – It is a citizen-centered, integrated health solution that maintains EHR based on several interoperable elements
  • NHS (Scotland) – This Emergency care Summary enables clinicians in hospital emergency departments to access crucial medical information with the consent of the patient on prescribed medications and allergies 24 hours a day
  • The Health Portal (Denmark) -This Health portal provides access for health professionals to patient data in local electronic patient records with the permission of the patient. [3]

 

Challenges and Future Directions                                                                                                                                        

As PHRs exhibit many benefits, they also raise a few concerns. Privacy and accuracy are two of them. Consumers are concerned about the privacy of their health information but if the data is developed precisely, PHRs offer security features and the patient's data can be protected. The accuracy of data entered by the consumers is also one area of concern. But if it is properly developed, this challenge can be overcome. [8] PHR technology offers a platform for patients to maintain a lifelong record of personally reported data and clinically sourced from various points of medical care that is accessible to patients, thus assisting patients in health self-management. [4]

As the consumers want to be more engaged in their healthcare and seek out information online, it will play a key role in the evolving electronically enabled health information environment. The growth of patient self-management tools for remote monitoring will fuel the adoption of PHR. [7] It may accelerate healthcare data exchange as it simplifies the consent models between producers and consumers of healthcare data. [20]

 

References                                                                                                                                                     

  1. Vance B et al. Benefits and barriers for adoption of personal health records. 2015.
  2. Archer N et al. Personal health records: a scoping review. Journal of the American Medical Informatics Association. 2011 Jul 1; 18(4):515-22.
  3. Detmer D et al. Integrated personal health records: transformative tools for consumer-centric care. BMC medical informatics and decision making. 2008 Dec; 8(1):1-4.
  4. Ruhi U et al. Utility, Value, and Benefits of Contemporary Personal Health Records: Integrative Review and Conceptual Synthesis. Journal of medical Internet research. 2021 Apr 29; 23(4):e26877.
  5. Sarwal D et al. Personal Health Record. In Stat Pearls 2021 May 4. Stat Pearls Publishing. PMID:32491689. Bookshelf ID: NBK557757.
  6. Tang PC et al. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Association. 2006 Mar 1; 13(2):121-6.
  7. Ball Mj et al. Personal health records: empowering consumers. Journal of Health Informatics & Management. 2007; 21(1):76-86.
  8. Endsley S et al. An introduction to personal health records. Family practice management. 2006 May; 13(5):57-62.
  9. Kim MI et al. Personal health records: evaluation of functionality and utility. Journal of the American Medical Informatics Association. 2002 Mar 1; 9(2):171-80.
  10. Benefits and Barriers for Adoption of Personal Health Records. Available from https://mds.marshall.edu/cgi/viewcontent.cgi?referer=&httpsredir=1&article=1135&context=mgmt_faculty [Last accessed on: 21 January 2022]
  11. Health IT. Gov. What are the benefits of personal health records? Available from https://www.healthit.gov/faq/what-are-benefits-personal-health-records[Last accessed on: 21 January 2022]
  12. PERSONAL HEALTH RECORDS AND THE HIPAA PRIVACY RULE. Available from https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/special/healthit/phrs.pdf [Last accessed on: 21 January 2022]
  13. What are personal health records? Available from https://www.calciumhealth.com/what-are-personal-health-records/ [Last accessed on: 19 January 2022]
  14. Fricton JR et al. Personal health records to improve health information exchange and patient safety. Advances in Patient Safety: New Directions and Alternative Approaches (Vol. 4: Technology and Medication Safety). 2008 Aug. PMID: 21249955. Bookshelf ID:NBK43760
  15. PHR (Personal Health Record): Benefits and Challenges in the Healthcare IT Sector. Available from: https://www.covetus.com/blog/phr-personal-health-record-benefits-and-challenges-in-the-healthcare-it-sector [Last accessed on: 19 January 2022]
  16. PHR (Personal Health Record): Benefits and Challenges in the Healthcare IT Sector. Available from https://www.covetus.com/blog/phr-personal-health-record-benefits-and-challenges-in-the-healthcare-it-sector. [Last accessed on: 19 January 2022]
  17. Tseng CH et al. Exploring the COVID-19 Pandemic as a Catalyst for Behavior Change Among Patient Health Record App Users in Taiwan: Development and Usability Study. Journal of Medical Internet Research. 2022 Jan 6; 24(1):e33399.
  18. Yamamoto K et al. Health observation app for COVID-19 symptom tracking integrated with personal health records: proof of concept and practical use study. JMIR mHealth and uHealth. 2020; 8(7):e19902.
  19. Povorina AV et al. Digitalization of Healthcare: Domestic and Foreign Experience, Development Trends. In2nd International Scientific and Practical Conference on Digital Economy (ISCDE 2020).2020 Dec 7 (pp. 651-657). Atlantis Press.
  20. Halamka JD et al. Early experiences with personal health records. Journal of the American Medical Informatics Association. 2008 Jan 1; 15(1):1-7.

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