Personal Health Records: An Essential Element for a Patient-Centered Care
What is a Personal Health Record (PHR)?
According to the Markle Foundation, PHR is 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.”
This concept is not a new one. In fact, patients have long kept health records but usually in a paper format. But with the developments of health information technology, having a PHR now is like having your health data at your finger tips. Anything that concerns your health including your demographic information, physical examination outcome, medical history, diagnostic/laboratory results, and even your medication list, can be readily accessed and managed — either by web-based or mobile application.
There are 3 types of PHR (Gee, et al., 2015)
- Standalone PHR — may be used by the individual but is typically not connected to a provider or healthcare organization.
- Interconnected PHR — may be provided by an insurance company, provider, or possibly the workplace, and these systems may allow some communication with providers and some access to selected laboratory systems, billing systems, or other healthcare content.
- Tethered PHR — literally connected to a provider or a healthcare facility’s EHR. These tethered systems offer the end-user direct access into portions of the patient record and may offer the potential for communication with the provider or the facility through a secure messaging portal.
Why PHR?
For me, the most apparent function of PHR is greater accessibility to health data which allows patients to be more involved in their health care. It facilitates patient-centered care, a concept that talks about the active participation of patients in their own treatment in cooperation with their health care providers.
Moreover, its benefits have been realized especially in the management of chronic diseases. In the study of Gee et al. (2015), wherein participants had a tethered type of PHR, the patients found the tool empowering. With PHR, they can easily participate in their treatment of care as they are able to track their laboratory and diagnostic results whenever and wherever and have the opportunity to communicate with their providers through the PHR messaging feature. PHR allows patients to become proactive toward collecting and organizing their own medical information.
Other benefits include:
- Potential use in emergency situations. In circumstances in which a patient might not be able to provide a history, health care providers could access an updated PHR to obtain critical information about allergies, medications, and diagnoses.
- Having a centralized record might help patient relate accurate histories during clinical encounters, check for drug interactions when filling new prescriptions, or avoid unnecessary duplication of laboratory tests and diagnostic studies.
- Portability of health care records. This is particularly helpful when patients are referred to another facility or in the case wherein the patient changes her location/residency.
- Improvement of medication adherence. Some PHRs have features on re-fill reminders medical appointment management.
Challenges in the Implementation of PHR
Despite the numerous potentials of PHR, there are significant challenges that needs to be overcome for a widespread implementation.
- Interoperability with EHRs
Multiple EHRs could exist for one patient. The patient could have a health record in a clinic, a hospital or laboratory. The problem is that these records are usually not stored in the same structure which hinders the interoperability of health information.
To address this, standards for health information exchange is needed. Moreover, incentivizing hospitals or clinics for meeting the meaningful use criteria — implementing PHRs could be a positive force to promote interoperability.
2. Varying levels of computer competency and health literacy.
Efforts to increase healthcare understanding among patients is very essential. Most of the time, patients are passive in the management of their health care and sometimes are not aware that it is there right to have copies of their own health data. For patients to adopt any version of PHRs, they must be convinced of the value the technology has for them.
A campaign for a patient-centered care is a must. Patient empowerment would allow patients to be actively involved in their own health care including management of their personal health record.
3. Implementation Costs
The cost of the development and maintenance of PHRs as well as the lack of potential users are among the barriers of its implementation. Which is why it’s important that consumers/patients must demand for it for the providers to invest on PHRs.
4. Privacy and Security
There are risks on information security and threats on unlawful use of access to patient data. Clear rules and policies on access and importation of health data by the patient must be established.
Marcelo (n.d) cites four security components that must be addressed by a trustworthy personal health record system:
- A clear identification of the stakeholders (that the system can identify external factors before interaction)
- Authentication — the process by which a previously identified entity is validated to be who the identified person really is.
- Non-repudiation (extent by which an application makes it impossible for an actor to deny that a transaction has taken place). This follows the principle that disallows an entity that has previously participated in an electronic transaction to refute the transaction.
- Authorization refers to the access and user privileges for authenticated users/applications. This answers the question: Who’s allowed to view the health record?
Criteria for a Good PHR
What makes a good PHR? One of our tasks for this week is to sign up for a PHR service and evaluate it. The criteria I’ll be using is a summary from all our assigned readings.
Keep in mind that majority (or if not all) of the free PHRs online are the stand-alone type. Meaning, it’s not connected to a provider and mostly works as a static repositories for personal medical information. For this activity, I’ll be evaluating Healthspek.
System Design/Ease of Use. What are the terminologies used? Is the system easy to navigate?
Personally, I like a simple and clean web interface. It’s easy to be overwhelmed when a website bombards you with so many options and links. Details must therefore be categorized and organized to lessen confusion. Another way to facilitate ease of use is to allow patients to select options from a given drop down lists instead of a free text. This way, it’ll be less time consuming and less confusing.
Healthspek Rate: 4/5
The sidebar of the website contained the main categories with collapsible links. The dashboard overwhelmed me a bit as it had ALOT of “speks” which I’m not even sure are useful for me. But turns it’s customizable and I’m able to delete or add the speks depending on my needs.
The Rx Reminder feature could be really helpful for medication adherence as it has a notification option. However, I was confused with the term “Label” but I interpreted it as the dosing information. The use of terminologies is a crucial part of PHRs. Medical jargons and ambiguous words must be avoided. Also, for some reason, I could not save the reminder :(
Tutorial on how to use the PHR was available on a separate web page. But I would very much appreciate it if websites use an interactive one, wherein you are able to learn about the usage in a step-by-step manner.
Accuracy of information entered. What data types are included in the PHR? How are they collected?
Healthspek Rate: 4.5/5
There are variety medical information that can be entered in the Healthspek PHR. Aside from personal and emergency contact information, there’s an option to include details about medical history, conditions, medications, lab tests, immunizations, allergies, procedures, and even genetic make up (a Pharmacogenetic Test (PGT) which of course you’ll have to pay). Information of your doctors and insurance coverage can also be entered.
The way to enter information is through a combination of a free text and selection from a list. There’s also an option to import pictures or documents.
Privacy and Security
From previous studies, this is usually not a concern from patients as they say that what would other people make use of the measurement of their blood sugar. But of course, health data is a sensitive data and if the type of PHR is connected from an institution’s EHR, security and confidentiality of data would really be an issue.
Healthspek Rate: 3/5
Healthspek PHR required a username and a password. No confirmation from an email was needed. Release and use of an individual’s information is stated in the a privacy policy agreement. In which they state that they do not sell, rent or share personal information to third parties without explicit consent but they may release the information to third parties in order to personalize the services or products that may suggested. The policy also states that the licensor is not covered by the privacy and securily rules under the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
Repository ownership and capability to give authorized access especially during emergencies.
Personal information is owned by you but there’s an option for your family members to track your record. A carry card could be purchased which contains an access code in case of emergencies. It also provided an organized summary of personal medical information for presentation to health care providers.
Healthspek Rate: 4/5
Promotion of Communication and Collaboration.
Healthspek does not have a communication feature and the inbox solely works in receiving messages. There’s an option to send the health record via fax or by sending your access code to the provider.
Healthspek Rate: 3/5
Monitoring and disease management.
The Healthspek has features on monitoring vital signs, medication refills, and also provide links on health, fitness, and nutrition articles (but for some reason, I cannot access). However, there is no feature on scheduling appointments and consultations. Disease monitoring is provided through a third-party website.
Complete information about your medications can also be entered and can be faxed to your pharmacy for refills. Unfortunately, it lacked the feature on checking drug interactions.
Healthspek Rate: 3/5
AVERAGE RATING: 3.7
Stand-alone PHRs are helpful in keeping track of your health-related issues and the management of your health data. It is usually free with additional charge only when you avail some special services. Given all these potential benefits of maintaining a PHR, one missing link would be the patient’s awareness and empowerment to manage his/her health. Therefore, we should continually educate patient to become “experts” in their own health.
References:
Gee, P.M. et al. (2015). ePatients Perceptions on Using Personal Health Records for Self-management Support of Chronic Illness. Computers, Informatics, Nursing, 33(6), 229–237.
LePage, T., Britton, O. (2013). Will the potential of personal health records be realized? Virtual Mentor, 15(11), 973–977.
Marcelo, A.B. (n.d.). A Framework of Personal Health Records in the Philippines.
Rau, H.H. (2017). Importance-performance analysis of personal health records in Taiwan: A web-based survey. J Med Internet Res, 19(4):e131. DOI: 10.2196/jmir.7065
Studeny, J. (2014). Personal health records: Is rapid adoption hindering interoperability? Retrieved from https://perspectives.ahima.org/personal-health-records-is-rapid-adoption-hindering-interoperability/
Tang, P.C. et al. (2006). Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 13(2), 121–126doi: 10.1197/jamia.M2025