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Creating Your Own Personal Health Record

Managing PsA

December 23, 2022

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Design by Ryan Hamsher; photo provided by Stefanie Remson; image by Getty Images

Design by Ryan Hamsher; photo provided by Stefanie Remson; image by Getty Images

by Stefanie Remson

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Medically Reviewed by:

Debra Sullivan, Ph.D., MSN, R.N., CNE, COI

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by Stefanie Remson

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Medically Reviewed by:

Debra Sullivan, Ph.D., MSN, R.N., CNE, COI

•••••

•••••

Welcome to From Practitioner to Patient, a column by Stefanie Remson about living with arthritis. Stefanie is both a nurse practitioner and a patient living with RA. She’s here to share what she’s learned from her own experiences as a patient and to demystify the medical side of navigating arthritis through her knowledge as a nurse practitioner.

Medical records include information about you and your health.

The records usually consist of “medical notes,” which is a term describing the way medical professionals document each visit with a patient. This can include observations, assessments, orders for drugs or therapies, test results, imaging, reports, and communications between other providers or staff.

The maintenance of medical records is typically required by healthcare professionals but is also enforced by most government-backed health insurance agencies. Your medical records will be stored on an electronic health record (EHR) system.

It’s federal law that all U.S. healthcare providers should give patients access to their medical records without charge. Some allow patients to see the information from EHR systems via a patient portal.

But from my own experience as a patient with arthritis, I’ve found that it’s also useful to keep my own records. For example, the level of detail can differ between healthcare professionals, and you might have multiple medical records from different doctors.

So I try to keep my own “personal health record” or PHR.

An overview: EHR vs. PHR

Electronic health record: An EHR is a computer record that is created and controlled by doctors. These may be accessible to you as a patient via a patient portal.

Personal health record: A PHR can be generated by a number of different sources, including physicians, patients, hospitals, and insurance companies. But ultimately, it is controlled by the patient.

EHRs and PHRs can stand alone, or they can be integrated.

The Centers for Medicare & Medicaid Services (CMS) has been encouraging the use of PHRs since 2006. You may find them available from a number of different resources, through health plans or doctors. But you can also make your own — an independent PHR.

There are many benefits of a PHR, such as stronger patient engagement and health literacy.

This is my template for making my own personal health record. It’s an easy way to make sure I have all information in one place, both for myself and for my doctors.

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1. Your information

Start with listing your personal information. This will include:

  • your name
  • date of birth
  • social security number
  • photos of your insurance cards or identifying numbers used to access insurance portals
  • emergency contact information

Keep your PHR secure yet accessible

Your PHR will contain a lot of personal information that’s important to keep secure and protected from others. This could be done by making the document password protected on any device, as well as any hard copies secure in a locked filing cabinet or safe.

It is also important that your PHR be easily accessible in any emergency situation.

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2. Your medical team

List all professionals on your medical team. This might include your primary care doctor, dietitians, physical therapists, other specialists like your rheumatologist, and non-traditional care specialists, such as acupuncturists.

Try to include the following for each:

  • name
  • practice address
  • contact information, including phone number and fax number
  • their role in your medical care
  • how long you have been under their care

3. Screening exams

Keep track of all of your screening exams. These might include pap smears, mammograms, eye exams, and any other health maintenance that may be specific to you and your body.

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4. Immunization records

Your most recent immunizations are recorded in a database that you should be able to easily access. It is typically maintained by your state, county, or city.

Include all documentation you have of any immunizations, even from childhood.

5. Histories

A number of different histories are important. History records can include:

Family medical history

List your family’s medical history. Typically you would only include blood relatives. But if you were exposed to any possible chemicals, such as volcanic ash, or experienced the same trauma as someone who isn’t a blood relative, you should list that here too.

Social history

This is about your lifestyle and would include answers to questions such as:

  • Do you smoke?
    • If so, how often and how much?
    • If you quit, when? How often and how much did you smoke?
    • Do you vape nicotine?
  • Do you drink alcohol?
    • If so, how often and how much?
  • Do you use street or illegal drugs?
    • Which one(s)?
    • How long have you used them?
    • How often and how much?
  • Do you use any prescribed controlled substances regularly?
  • Do you have any history of addiction?
  • Do you have any history of trauma, abuse, or anything else that should be documented here for your medical team to be aware of?

Surgical history

List all surgical procedures you have ever had. If you can, try to include:

  • procedure name
  • date of procedure
  • surgeon’s names
  • location it was performed

Obstetric history

List all pregnancies, complications, and outcomes.

Medical health history

This is going to be the longest and most detailed section of your PHR.

This includes things that may have been resolved or are historical, things you are currently being treated for that are managed, and things you are currently working with your doctor to figure out.

It’s best to think of this section as:

  • past
  • present
  • future

List any specific treatments you may have had for these diagnoses.

Include all previous hospitalizations, too. It’s important to include details of the facility where you were hospitalized so these formal records can be obtained if you don’t already have them.

Include all relevant imaging that relates to the specific diagnoses here as well. This might include ultrasounds, X-rays, CAT scans, MRIs, DEXA scans, and PET scans. You can list the type of scan, the date it was done, and a summary of what was found, or you can simply state “refer to attached” and include a copy of the reading done by the radiologist.

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6. Medications

I’d encourage you to include an up-to-date list of any currently prescribed medications and over-the-counter supplements that you take regularly.

It can also be very useful to include past medications you have tried. For example, if you have been on a biologic medication for your arthritis that did not work and was changed, list that here.

For each medication, mention:

  • the drug name
  • why it was prescribed or needed
  • administration type (for example, by mouth, an injection, or topically)
  • the prescribed dose and frequency of use
  • any reactions or side effects you had of note

This is also where you would list drug allergies, when the reaction occurred, what the reaction was, and how severe.

7. Lab work

Include all of your most recent lab work. Typically, the last two years are sufficient.

If there is something significant — for example, a specific test that was used for a diagnosis many years ago — you should include that, too.

You can also enter your labs into a spreadsheet to see changes and trends over time.

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8. Medical directives

Medical directives refer to DNR (do not resuscitate) orders or a living will. If you have one, include it in this document.

You can also list your medical power of attorney here for quick reference.

Medically reviewed on December 23, 2022

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About the author

Stefanie Remson

Ms. Stefanie Remson MSN, APRN, FNP-BC is the CEO and founder of RheumatoidArthritisCoach.com. She is a family nurse practitioner and is a rheumatoid arthritis (RA) patient herself. She has spent her entire life serving the community as a healthcare professional and has refused to let RA slow her down. She has worked with The Arthritis Foundation, The Lupus Foundation of America, Healthline, Grace and Able, Arthritis Life, Musculo, Aila, and HopeX. You can learn more at her website and on Instagram, Facebook, and Pinterest.

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