Introduction

Owned by Federica Andreoni
Last updated: Nov 11, 2024 by Mohammad Al-Ubaydli
10 min read

What Is a Personal Health Record?

Some History

A 1956 paper in the Journal of the American Medical Association proposed the idea of a 'personal health log' as a durable booklet that individuals should possess throughout their lives (Dragstedt, 1956). This ‘personal health record’ (PHR) was therefore a basic form of documentation containing essential health information for individuals to stay informed about their well-being.

Early investigations show that PHRs were often just a simple form of written notes containing the basic information a patient needs to know about their health. So the importance of maintaining such records predates the digital age. Such records were variously called ‘personal records’, ‘personal health records’, ‘card file for personal record keeping’, and more (Kim et al.,2011). These records were basic because previously, the medical service system and healthcare providers were the guardians of medical knowledge.

Today, the terms ‘patient-held health records’ and even ‘personally-held health records’ show the shift towards a more patient-centred approach in medicine. Healthcare consumers are generally now the main authorities in their health management.

The graph below shows the number of ‘personal health record’ publications per year from 1956 to 2023.

Screenshot 2024-04-18 at 11.23.59.png
Number of personal health records publications per year (PubMed)

So, how is a PHR defined today? There is a lack of consensus about the standard definition, and the term is sometimes used to refer to any platform storing health data. For this book, PHRs have specific characteristics and should not be confused with patient-facing digital systems. In the next few paragraphs, we’ll list some of the currently most used terms and explain their meaning.

Digital Systems

Authors use different definitions in different contexts, and fashions of definitions change over time. For the rest of this book, we will use the following definitions of the terms. For our purposes, the main difference between PHRs and other systems is the party that ultimately controls the record.

Electronic Health Record (EHR)

This is a digital version of a healthcare provider's paper chart. It is used by healthcare professionals only. Patients cannot access data in an EHR.

Tethered - Patient Portal (PP)

A patient portal gives a patient access to medical data but not ultimate control over access. If the patient controls access to the data, it is a PHR, a true personal health record (Al-Ubaydli, 2011). If the organisation controls it, it is an organisation portal. If a regional organisation controls it, it is an organisational portal, and so on.

Tethered.png

Therefore, patient portals include:

Organisational portals are patient portals that only show data from one organisation. For example, a GP portal shows data from the general practitioner of the patient and a hospital portal shows data from the hospital. Access is ultimately under the control of the organisation.

Disease portals focus on a single condition, such as kidney disease or diabetes. They allow patients to record and monitor health data specific to this disease. The workflow and features are tailored to that disease. The main drawback of this focus is ignoring the other conditions the patients might have, including common conditions and commonly correlated ones (comorbidities). For example people with diabetes often develop kidney disease. These diseass might be linked and interfere with the one the system is focusing on. This is a step back from a holistic view of patient health.

Regional portals: Some systems collect data from the EHRs in a specific area or region. These can be very effective as they bring together patients' data from local healthcare providers. However, they prevent data traveling when a patient travels. And they can normally cannot cope with data from the patient’s device.

Device Apps are apps where the only data source is a single device, such as a Fitbit. Patient-centered apps are apps where the only data source is data manually entered by the patients themselves.

Untethered - Personal Health Record (PHR)

This is similar to a patient portal but it’s managed and maintained by individuals. People can access, manage and share their health information found in this record.

A PHR is a patient-centered digital health record. The person ultimately controls access to the record.
Here we have an umbrella term for patient portals, tethered portals, versus part of untethered PHRs. It enables a two-way exchange of health information between patients and the healthcare system.

How We Define a PHR?

Hopefully, it is now clear that a personal health record is an electronic collection of health documentation that the patient controls and maintains themselves.

Patients can access their PHRs online and view test results, prescriptions, allergies and other data coming from multiple EHRs. The individual can add to and update the record, alongside the professionally-entered data.

With PHRs, a patient has a single, aggregated record that integrates data about them and follows them wherever they receive care. It’s not locked to a particular geography, clinical system, organisation or device.

Why Use PHRs?

Personal health records (PHRs) have the potential to revolutionise the way patients engage with the healthcare system and manage their health. They can be used to empower patients throughout the entire health cycle, from prevention to diagnosis, through treatment and recovery.

Advantages for Patients 

Patients can self-assess and self-manage with a PHR. They can also receive safer and faster care when a professional assesses and manages them as the professional sees data from all care providers throughout the patient’s life stages.

During the prevention phase, PHRs can provide patients with access to reliable and up-to-date information about how to prevent common illnesses and diseases. Patients can use PHRs to track their symptoms, measurements, and observations, and then contact their doctors if they notice any anomalies.

During the diagnostic phase, PHRs can help patients track their symptoms and share them with their doctors. This can help speed up the diagnostic process and ensure patients receive the correct treatment.

During the treatment phase, PHRs assist patients in managing their conditions and tracking their progress. PHRs can also be used to monitor medication adherence and report any adverse reactions. In the case of surgery, PHRs can be used to provide patients with instructions for preparatory activities and to track post-op recovery.

During the recovery phase, PHRs can help patients monitor their progress and communicate with their healthcare providers. PHRs can also be used to facilitate patient-initiated follow-up, which can help ensure that patients receive the care they need.

Advantages for Professionals 

With a PHR, professionals can treat more patients faster and safer. This is because the professional is more productive and because the patient can take on some of the work.

Since patient-professional alliances significantly influence health outcomes, empowering patients can potentially improve health.

PHRs give healthcare professionals access to a comprehensive overview of a patient's current health status and medical history. This enables them to make better-informed decisions regarding treatment and care plans. In turn, this increases the likelihood of treatment success.

PHRs help patients and healthcare professionals communicate electronically, making it easier and faster for them to connect thereby improving communication. Using PHRs for patient communication has the potential to reduce the workload for professionals, as they can spend less time on phone calls and managing multiple inboxes. Moreover, effective message-based exchanges on the PHR platform may lead to fewer face-to-face consultations, as certain issues can be addressed through digital consultations.

Healthcare professionals' workload will also be decreased because the patients take on some of the simpler tasks like monitoring and recording their own blood pressure or blood glucose levels.

Advantages for Providers

With better records, providers can lower costs and increase revenue by attracting more patients.

When professionals are burdened with excessive administrative tasks, documentation and other non-clinical work, their productivity and efficiency can be significantly impacted. The use of PHRs reduces this burden and can improve healthcare providers' efficiency in various ways:

Increased productivity and better patient care
Reduced administrative work frees up more time for professionals to focus on patient care activities, such as consultations, examinations, and treatments. This can lead to improved decision-making, patient outcomes and satisfaction.

Enhanced job satisfaction
Professionals who are not burdened by administrative tasks often experience higher job satisfaction. This can result in lower turnover rates and a more stable healthcare workforce.

Improved collaboration
When professionals have more time, they can collaborate more effectively with colleagues. This can lead to better care coordination and improved patient outcomes.

By reducing the burden on professionals, healthcare organisations can improve overall provider efficiency and the quality of care they provide to patients.

Advantages for the Payer

There are multiple reasons why using PHRs benefits healthcare payors.

Prevention
PHRs enable individuals to take proactive steps to prevent illnesses, reducing the need for costly treatments in the future. They also enhance patient safety by identifying health risks early, again decreasing the need for major interventions later.

Self-monitoring

  • Patients who use PHRs to manage their health and wellness can reduce their healthcare costs by reducing the number of appointments they need.

  • Informed patients make appointments more time-efficient.

  • PHRs alleviate disruptions in treatment for chronic conditions.

  • In general, patients who are self-monitoring through PHRs are less likely to have A&E admissions and surgeries. If they do need these, PHRs make emergency handling smoother.

 

 

Better medication adherence
PHRs help patients adhere to their medication regimens, resulting in better health outcomes and reduced healthcare costs.

Online appointment management
PHRs allow patients to manage their appointments online, reducing the number of DNA (Did Not Attend) appointments. This frees up space for other patients, improving overall healthcare efficiency. 

In general, a country whose citizens can use a PHR will have a higher quality of care at lower costs.

In a research paper titled ‘Utility, Value, and Benefits of Contemporary Personal Health Records: Integrative Review and Conceptual Synthesis’, Ruhi and Chugh (2021) summarised their findings in a table (Table 2) named ‘Value Propositions and Benefits of Personal Health Record Systems to Health Care Delivery Constituents’. Here are their findings:

Value Proposition

Benefits

Value Proposition

Benefits

Consumer empowerment and patient engagement

Promote consumer health education

Enable patients to become informed health care consumers

Enhance understanding of medical conditions

Simplify and clarify patient instructions

Provide a greater control over health outcomes

Offer convenient self-health management

Facilitate self-efficacy via cues for patient action

Healthcare communication

Improve patient-physician or provider communication

Timely information sharing for clinical decisions

End-to-end care delivery involving multiple constituents

Process efficiencies and cost effectiveness

Increased patient records portability

Reduced chronic disease management costs

Greater medical information validity and accuracy

Save patient, physician and provider time

Reduced cost of tests and procedures duplication

Enhanced quality of care

Increased patient safety considerations

Improved emergency situation handling

Extended patient data durability

Early identification of patient risks and health susceptibilities

Public health outcomes

Reduced burden on health care system and resources

Enhanced care for underserved communities and populations

Facilitate care in public health emergencies

Support public health research

New avenues for epidemiology surveillance and screening

Advantages for the Planet

PHRs have the potential to reduce carbon emissions in healthcare through:

  • Replacing in-person patient appointments with remote interactions, thus avoiding carbon emissions from journeys to medical facilities.

  • Allowing patients to remotely monitor themselves, thereby reducing unnecessary visits to the emergency department, admissions, and surgical procedures, all of which contribute to carbon emissions.

  • Substituting paper records and letters with digital alternatives reduces deforestation, lowers waste, and decreases energy use for paper production. It also cuts down on carbon emissions from the transportation and storage of physical documents. This helps in reducing carbon emissions.

 

Challenges in Implementing a PHR

Change Resistance 

Multiple studies have shown that implementing a new system in healthcare usually meets resistance. Also, they’ve shown that only a few medical workers embrace changes. Usually, healthcare workers meet changes with distrust, doubts and even rejection.

 

Payment models greatly increase the resistance to change in healthcare.

Healthcare professionals are typically compensated for specific tasks they perform. With the introduction of tools like PHR, patients can take on some of these tasks themselves. As a result, professionals may find themselves engaging in new activities that are not directly reimbursed, while the patient takes over activities the professional was previously reimbursed for.

This gap between old payment systems and new roles makes it difficult to adopt and integrate changes.

Training

One of the challenges in implementing PHR system is the provision of effective training. This refers to both current and future healthcare professionals' training.

  • Students' training: Studies show a lack of digital health in medical education. There’s a gap between the willingness of medical students to become digital transformation leaders in healthcare and the education that they receive.

  • Healthcare professionals' training: Implementing a PHR successfully requires all the professionals involved to be trained on the system. Lack of training is one of the key barriers to PHR adoption.

 

 

Fragmentation

Developing and implementing a personal health record (PHR) presents the challenge of populating it with relevant data. Patients' health information is historically scattered across various healthcare institutions' information systems. Different systems hol parts of their medical history and current health status. This leads to fragmented medical data when patients receive treatment from multiple providers. PHRs are urgently needed to consolidate patients' complete medical records into one single record, addressing the significant challenge posed by this data fragmentation.

Additionally, workflow fragmentation occurs due to the presence of multiple systems within the same institution, including those for training and communication.

Bibliography

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