What has happened to the Personal Health Record?

By Nancy B. Finn

There has been so much discussion online and in the press about electronic health records and physicians sharing EHR data with patients via such tools as OpenNotes and Blue Button, that the personal health record (PHR) has been lost in the dialogue.

The PHR is a tool for patients to collect the diverse silos of their health information: current and past history, medications, prescribed and over-the-counter, downloads from apps and wearable devices, allergies, procedures and surgeries, and have that information wherever and whenever you require or seek care.

PHRs might also include information that your doctor may not have, such as your exercise routines, hereditary illnesses, or changes in your dietary habits. Having a PHR should improve your care by providing you with an easy way to share   your information with multiple providers. Setting up and maintaining the PHR will also increase your own awareness of your health and help you make informed health decisions.

Your PHR does not replace, the legal medical record (EHR) of your primary care provider. It is a record compiled and maintained by you, and in many situations, is the only place where all of a your medical information including: insurance details, lab results, names and phone numbers of doctors and details of injuries, illnesses, surgeries, procedures, allergies and treatment is available in one document 24/7 on a web-enabled device, such as a computer, laptop, tablet or smartphone.

PHRs, are offered by a variety of sources, such as: health care providers, insurers, employers, commercial suppliers of PHRs. Many Physician Groups and local hospitals offer PHRs through their patient portals or on their web sites. Many payers also offer PHRs on their websites. They can be stored in a number of ways from a simple paper file folder to a USB drive or online through a web-based service that is available so that you can enter and update your health information anytime 24/7.

Among the choices for you to investigate in setting up a PHR are the following online options where viable PHR tools are available and often free:

My Medi Connect https://www.mymediconnect.net/ Microsoft Health Vault https://www.healthvault.com/us/en American Health Information Management Association AHIMA http://www.myphr.com/

A 2009 study, reported in Health Affairs, concluded that more than $8 billion is wasted each year because of redundant lab and radiology testing. One of the reasons for patients to have a PHR is the reduction or elimination of these duplicate procedures. With an up to date personal health record that includes all test data and results, a second round of tests become unnecessary.  Additionally with all of the  diagnostic tools: sensors on smartphones and wearable items that track fitness and biometrics, data can sync from these apps and devices into the PHR and be sent to your providers, or stored and available when needed.

In a nationally representative survey of more than 2,100 respondents, conducted by the Office of the National Coordinator, and reported in Health Data Management, one-third of individuals reported a gap in health information among their providers or between themselves and their providers. These gaps included one or more of the following: had to bring an X-ray, MRI, or other type of test result to provider appointment; had to wait for test results longer than individual thought reasonable; had to redo a test or procedure because the earlier test results were not available; had to provide medical history again because individual’s chart could not be found; and had to tell a provider about medical history because they had not gotten records from another provider.  This reinforces without a doubt the value of the PHR.

When looking at the issue of whether or not patients respond positively to having and using personal health records, a study published online Sept. 8 in the Annals of Family Medicine, found that 25.6 percent of patients used an interactive preventive health record (IPHR), with the rate increasing 1 percent per month over 31 months. Among the study population, nearly one-quarter of users (23.5 percent) signed up within one day of their office visit. IPHR use was more likely among older patients and patients with co-morbidities but less likely among blacks and Hispanics.

Another study by the Center for Information Technology Leadership (CITL), a nonprofit IT research center based at Partners HealthCare System in Boston, suggests that a change in the way we keep health records could save billions. According to the report, widespread use of PHRs could save the US healthcare industry between $13 and $21 billion a year.

All of this evidence suggests that the PHR has extraordinary value including the ability to eliminate redundant testing, save billions in healthcare costs and insure that a patient’s full information is available to all their physicians at the point of care.

In an emergency the PHR can be a lifesaver, providing vital information including diseases the patient is being treated for, drugs the patient is allergic to and how to contact the primary care provider or other emergency contact to coordinate care.

In conclusion, although there is no answer as to why the PHR has not been more popular and widespread,  it is time to bring it back so that every patient can benefit from more efficient, cost effective and safe medical practice.


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7 Responses to “What has happened to the Personal Health Record?”

  1. Lisa Bond says:

    The PHR is exactly where we need to be! Unfortunately, PHRs have been silo’d to the payers & providers who provided them, or too much work for patients to go and get records to merge with their own data.

    At CareSync, we bring all of it in one place, using a combination of awesome technology and human interfaces. The majority of patient histories are still on paper, so we’re transcribing it and merging it with between-visit information for a truly complete health story.

    Completely agree with your assessment of the PHR and the industry in which it has faltered. It’s time to revive it and make the patient the center of the complete health record!

  2. Michael says:

    I have kept a Word-based record for many years, covering data from 1969 to the present. So far, I have only found one physician who has read it. In one case, I was to have an MRI, and the provider wanted a “complete history of all radiation exposure”. They gave me about 1″ of space on their intake form for this, so I just said “see attached” and attached my 2 pages’ worth of data. They never even looked at their form, let alone mine — just marched me into the lab and zapped me.

    My principal provider locally just instituted an on-line system to great fanfare, which as far as I can tell is just an ultra-secure e-mail system, a pain in the neck to use, and riddled with incorrect data.

    We’re doomed.

  3. Tom says:

    The website mentioned here https://www.mymediconnect.net/ is not accepting applications and is shutting down on 12/31/2014. PHRs just can’t seem to get traction in the market.

    • NancyFinn says:

      Yes Tom, I did not know that this website would be shutting down. I agree it is unfortunate that PHRs do not seem to gain traction and yet are such a valuable resource for the patient.

  4. Hannah says:

    I agree that with so much ongoing discussion regarding electronic health records more emphasis should be placed on the personal health record. There are currently many problems with the electronic health record systems in place; many cannot be shared between providers, information must often be truncated or rephrased to fit the software options, information is not always intuitively or easily accessible, and these programs can be extremely costly and time consuming to implement. Although personal health records cannot necessarily solve these problems, I believe they can help will in the gaps. If a person was to keep all of their health record information themselves we would eliminate the problem of data transfer between different physicians. It also could allow for a more comprehensive set of information to be kept, including a complete patient history that was not limited in size by the electronic program a particular doctors office used. In addition the act of keeping track of personal health information by the patient would help get them more involved and more educated on their healthcare issues. By being more involved in their healthcare and having all of the information for themselves patients would be more likely to follow instructions and treatment plans for their health issues and produce better outcomes for them. I would imagine that the only patients who currently maintain these personal healthcare records would already be very involved and concerned with their care, so it would be nice to see the population with personal health records expanded. With encouragement or incentive from healthcare providers or insurance companies for people to keep these records I think we could see great improvement to our healthcare system.

  5. Adhira Rai says:

    The PHR is a tool that you can use to collect, track and share past and current information about your health or the health of someone in your care. Sometimes this information can save you the money and inconvenience of repeating routine medical tests. Even when routine procedures do need to be repeated, your PHR can give medical care providers more insight into your personal health story. For more details please check our website: http://www.medikliik.com

  6. Rakesh Shukla says:

    You may not be able to maintain, update or share your diagnostic reports and health records with your doctor from your home or anywhere, i have used one of the great online health record service, please check it https://mediklik.com/. It gives your doctor the facility of remote monitoring for your extra care and also allows your loved one to check and maintain your records. Say bye bye to those bunch of files of reports and records.

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