This article will ... Explain the difference between an electronic medical record and a personal health record. Outline the most important elements of a PHR, which should include your medical history, a list of your providers, and medications you take. Offer guidance on how to protect your personal health record, whether your PHR is paper-based or digital.

A good diet and exercise may be the most effective way to control your family’s health care costs and keep everyone feeling fit, but an organized personal health record plays an equally vital role.

Indeed, personal health records, PHRs, enable patients to take a more active role in their treatment plans, maintain optimal health, and extract more value from the health care system by minimizing waste. (Think redundant tests when you seek a second opinion, unnecessary immunizations when you can’t remember the date of your last shot, or paying full price for a procedure that you could have had done for less last year after your family met its annual health insurance deductible).

PHRs also simplify the process of sharing relevant health information with providers, which helps the patient facilitate care coordination and improve chronic disease management.

“A personal health record is an excellent way to keep up with screening exams, test results, medications, and medical and surgical history,” said Cindy Cooke, immediate past president of the American Association of Nurse Practitioners, in an email interview. “It is a challenge for all of us to remember the dates of a particular procedure, so having a personal health record makes it easier for patients to partner with the provider of their choice to improve health outcomes, decrease repeating tests and therefore decrease health care costs.”

Who is responsible for updating and maintaining personal health records?

Unlike the electronic health records (EHRs) at the doctor’s office, a personal health record, or PHR, is managed and maintained by you. As such, it has the capacity to be more complete and readily accessible.

(Take note: Many healthcare providers and insurers these days also make web-based patient portals available to members, which allow them to view test results, book appointments online, pay bills, send secure emails to providers and, in some cases, conduct video consults from their home. Patient portals make managing your health a cinch, but the health information they contain is often limited to the providers who currently treat you. Also, patients may not be able to transfer the digital data collected to their new patient portal when they change providers or plans.)

What is a personal health record?

The personal health record that you create can be either paper-based – kept in a folder – or electronic. They need not be overly elaborate, but they should be thorough.

“PHRs are not difficult to put together,” said Cooke.

The Office of the National Coordinator for Health Information Technology suggests a PHR include your family medical history, personal medical history, contact information for the patient and his or her family members, a list of providers involved in the patient’s care, and a list diagnosis, medications and allergies. It should also include your immunization record, lab test results and consultation reports.

You may also wish to include a copy of your living will, which clarifies your wishes for end of life care, and medical power of attorney, which grants another individual (of your choosing) to make medical decisions on your behalf. (Learn more: Wills and the basics of estate planning)

But you needn’t stop there. You can populate your PHR with whatever information you deem relevant, including a list of childhood illnesses, sleep patterns, anxiety triggers, injuries, prior hospitalizations, and surgeries.

Weight, calorie intake, and heart rate metrics gathered from fitness apps can also be input, if desired, to help you set and keep goals.

You can even include the name of your health insurance company and policy number.

Security risks

Whichever record keeping system you adopt, you will need to be sure it is secure, lest your private health information fall into the wrong hands.

Paper-based records, for example, should be stored in a locked, fireproof cabinet with access granted to only authorized family or friends.

Digital PHRs, by contrast, may be easier to keep current and transmit, but they also introduce some added privacy concerns. (Related: 8 simple steps to secure your digital data)

“Security is always a concern and that is why many patients choose to maintain their PHR at home on their personal computers and print out records as needed,” said Cooke, noting patient portals that are tethered to an EHR at a physician’s office or insurance company are generally covered under the federal Health Insurance Portability and Accountability Act, or HIPAA, and thus subject to the most stringent privacy safeguards.

That said, not all health information is protected by HIPAA. That includes the health information that patients:¹

Store in a personal health record that is not offered through a health provider or health plan.
Share in a mobile app or on a mobile device.
Share over social media websites or health-related online communities.

For that reason, the federal Office of the National Coordinator for Health Information Technology recommends that consumers consider installing encryption software to protect their devices, research mobile apps and software programs before downloading, read the terms of service and privacy notices of software vendors, and install and activate remote wiping features that automatically delete sensitive data stored on a mobile device if reported lost or stolen.

Digital PHRs come in all shapes and sizes, according to Patientprivacyrights.org, a patient advocacy group.

Consumers can install a PHR application on their personal computer that enables them to input information, download files, and scan documents they receive from their providers.

The Apple Health app, for example, enable consumers to download their personal health records from their healthcare provider’s website or app and store their data securely in a single location.

Others, such as MyChart, are internet-based tools, which should be password and user-name protected. Users can access their PHR online and give others access as well. Some software is connected to different providers and can store data from personal health devices such as blood pressure monitors, glucose monitors, and weight scales, so it can be easier to keep your health record up to date. It can also be used to manage the health of a child, parent, or other family member.

Hugo similarly offers a centralized and secure database that can enables consumers to gather their electronic health records from providers, pharmacy data, and billing records together. It can also be shared with health care providers and family members or synced with research databases to help find next generation treatments and cures. (Learn more: Want better medicine? Be a better patient)

Patientprivacyrights.org notes, however, that the degree of privacy of personal information on Internet-based PHRs depends on the security of the devices you use to store and transmit your data, whatever is built into the PHR application itself, and the security of the networks the information travels along.

Finally, smartphone mobile PHR applications, like the federal government’s iBlueButton.com, which is free, enable consumers to access and share their personal health information. Other fee-based options even allow you to share that data using social media, which Patientprivacyrights.org views as worrisome for health care consumers, because social media outlets may not use adequate encryption technology to safeguard privacy.

Look before you leap

To protect their privacy and patient rights, consumers should do some research before they adopt a digital PHR.

Questions should center on record completeness, data rights, access, security, portability and cost.

First, find out if the PHR you are considering will store your complete health history, whether that information will be automatically populated from other records (such as insurance, employment), and whether it can be securely transferred. Patients should ask, too, if they can delete, correct, or add information on an ongoing basis.

Importantly, consumers should also ask whether the PHR software vendor has ownership rights to the collected information, whether they can sell their information to a third party, and if so, how they can protect their privacy. They should inquire as to whether their information will be used for employment or insurance coverage decisions.

Find out, too, who has access to the information in your PHR, how you can control the sharing of your information, and how the vendor has secured it to prevent unauthorized use.

Finally, if the personal health record is made available through an employer or insurer, find out whether you can still connect with your PHR if you are no longer employed or insured by that company, whether you can transfer your information to another PHR in the future, and whether there are any fees (e.g. access fees for doctors, dentists or authorized caregivers) involved in maintaining your personal health record.

While consumers must be vigilant, especially where protected health information is concerned, they should not let that deter them from creating a robust PHR, said Lesley Kadlec in an interview, AHIMA’s director of Health Information Management Practice Excellence.

“It is important to be mindful about privacy, but it is also important to think about the benefits of having access to personal health records in emergency situations,” she said. “Having an accurate list of allergies and your past medical history and surgeries and being able to present that information quickly to emergency room personnel can make a big difference in getting the care you need quickly.”

The benefits of maintaining a thorough personal health record are almost too numerous to name, enabling better coordination with health care providers, opportunities to manage costs, and portability when you need it most.

Just be sure you verify in advance that the information you store and transmit is secure.

“A PHR allows you to store information from a variety of health care organizations all in one place,” said Kadlec. “When you review your records, you can speak more intelligently to your providers, review the instructions they give you later when you get home and ask the right questions, which are all a really big benefit to the patient.”

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This article was first published in September, 2016. It has been updated.

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