Course on PHRs
We created a course on PHRs which will shortly be available on our learning management system.
Author: Federica Andreoni
Contact: federica@patientsknowbest.com
- 1 Learning objectives
- 2 1. What PHRs are
- 3 2. Why use PHRs
- 4 3. Challenges in implementing a PHR
- 5 4. Types/Classifications of PHRs
- 6 5. Market
- 6.1 Cerner and Epic
- 6.2 NHS App
- 6.3 PKB
- 7 6. Where the data come from:
Learning objectives
By the end of this course, learners will be able to
Describe what PHRs are and why they should be used
Differentiate between similar concepts related to PHR
Demonstrate why common misconceptions about PHRs are wrong
Identify solutions for the main challenges related to PHRs implementation
Compare and evaluate different types of digital solutions for patients' records
1. What PHRs are
1.1 A bit of history about PHRs
Ideas of the importance of people having all their health information together in a single place trace back to the 50s. At that time, a Journal of the American Medical Association paper suggested the ‘personal health log' should be a “booklet in the permanent possession of everyone, bound well enough to last a lifetime” (Dragstedt, 1956).
https://pubmed.ncbi.nlm.nih.gov/13306552/
“In other words, PHR in a historical context represents a simple form of notes that contains information one needs in order to be informed about one's health, and early studies on PHRs focused on such paper records. Therefore, even though not digitized, the importance of such records has been recognized.” Kim, J., Jung, H., & Bates, D. W. (2011). History and Trends of. Healthcare Informatics Research, 17(1), 3-17. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3092992/
“A research about personal health records' state of the art at the end of the 20th Century found that, at the end of 2000, there were 27 internet based systems defined as PHRs. However, most of those PHRs were at a very early stage of development.” Sittig, D. F. (2002). Personal health records on the internet: a snapshot of the pioneers at the end of the 20th Century. International journal of medical informatics, 65(1), 1-6 https://www.sciencedirect.com/science/article/abs/pii/S1386505601002155
1.2 PHRs, EHRs, EMRs, PEP, Patient Portals
Electronic health record (EHR): is a computer record that originates with and is controlled by doctors, and that they use to coordinate their internal teamwork.
Patient portal: Patient portals are tethered to the professional-facing EHR. Most EHR vendors sell patient portals as a part of the overall software suite, and patient portals came to prominence as a part of meaningful use requirements.
A patient might have access to more than one patient portal at any time, depending on the number of healthcare providers they see.
Personal health record (PHR) is a set of records that the patients control. PHRs are electronic medical charts containing medical data and information about a patient and are maintained by patients themselves. Patients can access PHRs online and view test results, prescriptions, allergies coming from multiple EHRs etc. These medical records can be managed by the individuals by adding medical history, personal information or simply to monitor their health. With untethered PHRs, a patient has a single, aggregated record that integrates data around the patient and follows them where they receive care and it’s not locked to a particular geography, clinical system or organisation
Patient Engagement Platform (PEP) are more transactional platforms that focus on sharing letters, appointments and questionnaires with patients and having appointment management capabilities.
PEPs don’t seem to focus on clinical usage, sharing clinical data or delivering clinical transformation as much as PHRs.
2. Why use PHRs
2.1.1 Benefits for patients
Monitoring and Prevention:
Comprehensive patient profiles and medical history help in early detection of illnesses and support preventive healthcare activities.
Diagnosing:
PHRs enable better diagnostic processes through decision support tools and personally tracked information, improving the overall quality of diagnoses.
Pre-op Preparation:
PHR functionalities assist in preparatory activities before medical interventions by tracking essential health data and facilitating reviews with specialists.
Intervention and Treatment:
PHRs improve the quality of medical interventions by providing up-to-date medical history and facilitating continuity of care across various points of care.
Recovery and Rehabilitation:
PHRs aid in effective recovery and positive health outcomes by monitoring risk factors, connecting patients to providers, and facilitating tailored interventions.
2.1.2 Benefits for professionals
Enhanced Decision-Making:
More patient-generated data in PHRs can lead to better-informed decisions.
Improved Patient-Professional Communication:
PHR-mediated electronic communication allows for more efficient and asynchronous interactions, enhancing the overall efficiency of patient-professional communication.
Active Patient Engagement:
Engaged patients who collaboratively manage their conditions with professionals tend to have improved health outcomes and this also contributes to a more effective and efficient healthcare system, benefiting both patients and healthcare professionals.
2.1.3 Benefits for the healthcare system
Healthcare cost Reduction: PHRs lead to lower costs in chronic disease management, medication, and wellness programs.
Enhanced quality of care: PHRs enhance patient safety by identifying health risks early and help in smoother emergency handling. They also alleviate disruptions in treatment for chronic conditions.
Reduced Healthcare Disparities and Access Barriers: PHRs help bridge gaps in healthcare access, reducing disparities across demographics, economics, and regions.
Proactive Care and Resource Efficiency: PHRs enable proactive care delivery, which can help in reducing the burden on public health institutions and resources.
Data-driven Public Health Improvements: PHRs, with consumer consent, serve as a valuable source of public health information. They facilitate research on healthy lifestyles, infectious disease prevention, and contribute to regional/global illness surveillance.
2.1.4 Benefits for the environment
PHRs use can lead to a reduction in carbon emissions related to heatlhcare through:
Replacing in-person patient appointments with remote interactions reduce carbon emissions from trips to the hospital or GP
Patients being able to remote monitor themselves can reduce unnecessary emergency department visits, admissions and surgery procedures (all of these things would normally emit carbon)
Substituting paper records and paper letters with digital alternatives also reduces carbon emissions
Replacing in-person patient appointments, attendances and communication with remote interactions reduce carbon emissions and the air pollution emitted from trips to the hospital or GP. It also increases the savings potential for patients and health and care providers.
3. Challenges in implementing a PHR
3.1 Change resistance
Multiple studies showed that the embedding of a new system in healthcare usually meets resistance and that only a small number of medical workers are inclined to changes or their personality tends to accept changes. Most frequently, changes is met with distrust, doubts, and even rejection by workers.
Mareš, J. (2018). Resistance of health personnel to changes in healthcare. Kontakt, 20(3), e262-e272. https://www.sciencedirect.com/science/article/abs/pii/S1212411718300114
Two of the drivers of change resistance are the natural human tendency to resist, and the payment model in healthcare: if you are used to receiving compensation for certain tasks, and a new tool, such as a PHR, allows patients to perform those tasks independently, you’ll be engaged in new activities, which you probably aren’t compensated for specifically. This poses a structural challenge.
3.2 Providing effective training
One of the challenges in implementing a PHR is providing effective training. This refers to:
students training: studies show a lack of digital health in medical education and 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 of the professionals involved to be trained on the system. The lack of training has been found to be one of the key barriers to PHRs adoption
3.3 Data fragmentation in numerous different portals.
One of the most challenging tasks when creating a PHR is populating it with relevant data.
For many years ( and still now ) patients health data have been recorded in healthcare institutions' information systems. This means that if a patient has been treated in 10 different places, it’s likely that each of those system holds part of the data: depending on which was the treatment, a system might hold a radiology report, another one might hold data about the patients' diabetes condition and related test results, and so on on so forth…. This way, no one, nor the patients, nor the professionals looking after them, have a complete picture of the patients' past medical history and present conditions.
Data fragmentation is one of the main challenges, but also one of the main reasons why PHRs putting together the whole medical history of patients are not only useful but fundamental.
3.4 Misconceptions and common concerns about PHRs
3.4.1 Data security
One common misconception about PHRs is that their use threatens patients' data security (preventing inappropriate access and ensuring appropriate access) and privacy (the ability of the patient to say whose access counts as appropriate).
Advances in medical and computer technology indeed make maintaining privacy increasingly difficult, and that’s why all PHRs systems come with rigorous security protocols.
Without PHRs, most institutions do not handle privacy correctly. For example, any person who calls a doctor’s office can find out any patient’s test results if they also know that patient’s name and date of birth. PHRs facilitate privacy by putting control in the patient’s hands. PHRs automatically track changes in a patient’s consent over time so you do not need to constantly and manually check.
Furthermore, in healthcare data security, it's crucial not only to prevent unauthorised access but also to guarantee that the right people have the appropriate access for the secure management of patient care.
Al-Ubaydli, M. (2011). Personal Health Records: A Guide for Clinicians. Wiley-Blackwell.
Most PHRs have an access log available for patients to review, where they can see who accessed their record, when, and what they saw. It would be impossible for patients to be able to know this without a PHR.
3.4.2 “Patients don’t understand their health data, so shouldn’t have access to them”
Dr Jim Jirjis story:
Some patients are experts in their conditions
This is an outdated view - now patients can have access to information as never before through the internet, and clinical knowledge is not restricted to professionals. Even if reading on the internet doesn’t make you an healthcare professional, people can still be knowledgeable about their conditions.
Even if it was true that patients don’t understand their health data, this is not a reason not to give them access, rather, it would be the opposite. PHRs allow patients to have access to their health data, but also give them reliable sources where they can learn more about their conditions, and action plans to empower them and make them more knowledgeable and independent.
It’s not sustainable to have professionals being the only ones responsible for patients' care - we need to give the possibility for people who can look after themselves, to do it in an easy way.
3.4.3 “For patients who are elderly or lack computer literacy, a PHR is useless”
More elderly people are familiar with technology than they are given credit for
Even when this is not the case, many PHRs have carer functionality, therefore, who lacks computer literacy can be helped and instructed on how to navigate the platform by family members or friends who are more tech-savvy.
Even when the patient lacks computer skills and doesn’t have anyone willing to help, a PHR is still useful because, thanks to other patients who use PHRs and are monitored remotely, capacity is saved for those who can’t use them, and they can be seen face to face without having to wait too long.
3.4.4 “Require significant patient support”
It is true that at the beginning there will be a requirement to support patients when rolling out a PHR, but this happens when introducing any new way of working
This time is planned for in the contract and set up phases, so that the clinicians/admin team are able to plan in advance how to do this in the most efficient way
In the long run, patients who needed support before the PHR will still need support: while before they used to go in person or phone the clinic, now this workflow can be moved to digital and be made more efficient, thus reducing overall patient support required.
3.4.5 “Increase professionals' workload”
There will be a period of adjustment using new system
This is planned for in the contract / set up phases
Professionals won’t be left alone. They would be supported by leads for IG, integrations, comms etc, with whom they should have made a plan for the rollout of the PHR.
As per 3.4.4. Patients already need to be supported by telephone or in person, PHRs would move this workload to digital, not increasing it.
Long-term benefits to reducing workload
4. Types/Classifications of PHRs
There are different electronic systems which are referred to as PHRs, but that are restricted either geographically or to a specific EHR. Some of the examples:
Organisational portals
Some patient portals only include and allow patients to view data which are contributed by their organisation eg a GP portal (showing data from the GP) or a hospital portal (data from the hospital).
Disease based portals
These PHRs are focused on a single disease each, such as kidney disease or diabetes. They allow patients to record and monitor health data which are specific of the condition they are dealing with, thanks to ad hoc features, developed specifically for that disease. The main drawback of these health records is that the focus on one disease might ignore other comorbidities the patients might have, and that might be linked and interfere with the ones the record is focusing on. This approach represents a step back also with what concerns the holistic view of patients' health.
Regional portal
Some systems have been, both in the UK and abroad, developed for specific areas/regions. These can be very effective as they bring together patients' data from different healthcare providers, however, since they are tied to a geographical area, they become of little/no use if a patient has one or more episodes of care in a different place, or if they move.
Device apps
Devices connected to Apps such as fitbits or period trackers
Patient-entered apps
Patient-centred
A patient centred PHRs is a PHR which offers an untether solution, not tied to any specific geographical area, nor clinical system, and that allows both patients and professionals to enter new data, as well as being able to integrate with any EHR.
5. Market
Cerner and Epic
Cerner and Epic are among the most famous and widely spread Electronic Health Records systems in the world, used both for acute and ambulatory care and clinical settings. As of 2020, 29% of acute care hospitals use Epic, while 26% use Cerner.
NHS App
The NHS App is an app by NHS England, accessible by anyone who’s 13 years old or older and that is registered with a GP surgery in England or the Isle of Man. In the app, patients can access a range of NHS services, such as viewing their GP data, ordering repeat prescriptions, book and manage appointments, , and register organ donation decision
PKB
Patients Know Best (PKB) is Europe’s largest personal health record platform, enabling patients and healthcare professionals to access real-time health information - anytime, anywhere.
As the world’s first patient-controlled - and patient-centered- personal health records system, PKB facilitates borderless, integrated care wherever the patient needs it. The system connects information from primary, secondary, social and mental health care providers, to create a single, unified copy of patient data. Everything from test results, care plans, real-time monitoring data and discharge summaries, to the patient’s own data - either uploaded from their journal, wearable devices or using symptom tracking, are all available in one patient record. This allows patients to access their data online to self-manage their health and wellbeing and reduces the need for professionals to request background information from the patient’s regular healthcare team.
In 2020, PKB became the first personal health record (PHR) to integrate with the NHS App. This extends the NHS App’s current features to allow patients to access PKB’s full health and care record and functionality, direct from the national NHS interface.
6. Where the data come from:
To build a complete picture of the patient’s health, data in PHRs can come from different sources. They can come from integrations with institutions' records systems, they can be contributed manually by the patients, by the professionals, by the carer, or they can come from devices integrations.
Because of the multiple ways in which data can be added to the record, it’s important that PHRs show the source of each data point.
6.1 Integrations
When we say a PHR can be integrated with a pre-existing clinical system, we refer to the ability of a PHR to collect data from different clinical systems of institutions delivering care to a patient, and present them all in the same place.
Depending on the level of integrations, a PHR can collect and display many different data types, such as test results, imaging reports, discharge summaries, and much more.
Hospital IT systems usually exchange data with PHRs using HL7 messages. This allows for fast integration with legacy systems, including laboratory information systems for test results, documentation systems for clinic letters and discharge summaries, radiology information systems for radiology reports, PACS systems for DICOM images and prescribing systems for medication records. (from )
6.2 Data contributed manually by the patients
Another source of data for the PHRs are the patients themselves. These have in fact the ability, in most PHRs, to upload information about their own health. These could be for example health data released by hospitals abroad during a trip, or patients' observations about their health, such as symptoms.
6.3 Data contributed manually by the professionals
Data can also be contributed manually by professionals. This means that even professionals whose hospital systems are not integrated with a certain PHR can add data to it.
6.4 Data contributed manually by the carers
Data can also be added manually by carers, such as family members or friends. This is particularly beneficial for children, who thanks to their carers' ability to add data, will have access to a well-populated PHR when they grow up.
6.5 Devices
One of the great innovations of some PHRs is the possibility of integrating them with monitoring devices and mobile phone apps.
This would mean that data from the devices would flow directly to the PHR. These data could be, for example, blood pressure, steps, hours slept… that would be automatically plotted in graphs on the PHR.
Being able to have these monitoring devices' data alongside other clinical ones allows patients and professionals to have a better and more comprehensive picture of the person’s health, and it also augments the possibilities of self-monitoring and patient empowerment.