Dr. You

This section explains the difference between Medical Records (MR) and Personal Health Records (PHR). It reviews why they are essential and how to access, organize, and take control of your health information.

Patient Story – (The story is true; the patient’s and provider’s names have been changed.)

Amira, a 52-year-old traveler, fell seriously ill with sepsis after a trip abroad during which she had been dealing with a urinary tract infection. While staying with her daughter in New York, she was taken to the emergency room due to severe chills and uncontrollable chattering. The doctors quickly identified sepsis, a potentially fatal bloodstream infection, but were unable to treat her immediately because Amira was allergic to certain antibiotics. Unfortunately, her medical records, which contained critical information about her allergies, were locked in her doctor’s office in Cleveland, Ohio. It took until Monday for the New York doctors to obtain her records from Cleveland. While Amia eventually recovered, she had to return to the ER days later with severe head and neck pain caused by complications from the untreated sepsis.

This story highlights how having immediate access to a complete personal health record could have saved Tracie from unnecessary suffering and potentially life-threatening delays in treatment. If her medical history had been accessible digitally and under her control, the doctors could have provided the correct treatment sooner, improving her recovery process significantly.

Why Your Medical History Matters

When you are sick, your doctor(s) will use your medical history, a physical exam, diagnostic tests, and patient–doctor communication to determine what is wrong with you. How likely would your doctor(s) be to make the right diagnosis in the shortest time frame, and prescribe the right treatment if they only knew, say, 60% of your medical history, or if they had to wait thirty (30) days for information about your past surgeries or recent test results?

If you want the best chance of an accurate diagnosis and successful treatment when you are sick, you need to be able to provide your medical history as accurately and quickly as possible to any health provider. With proper planning, you can even provide vital medical and contact information in emergencies, even when you cannot speak for yourself.

Know Your Rights

The Health Insurance Portability and Accountability Act (HIPAA) grants individuals in the United States the right to access their medical records. This federal law, enacted in 1996, established the HIPAA Privacy Rule, which provides patients with a legal, enforceable right to see and receive copies of their health information maintained by healthcare providers and health plans.

Key aspects of this law include:

• Timely access: Healthcare providers must typically respond to requests within 30 days.
• Reasonable costs: Fees for copies must be limited to actual costs for labor, supplies, and postage.
• Format options: Patients can request records in paper or electronic format.
• Comprehensive access: Patients have the right to access most of their health information, including medical records, billing records, and other records used in medical decision-making.

Additionally, the 21st Century Cures Act of 2016 further strengthened patients’ access rights by mandating that healthcare providers give patients access to all the health information in their electronic medical records without charge. This act enhanced medical information sharing to empower patients to make informed decisions about their healthcare.

What Information Can a Doctor Withhold?

Your doctor has a right not to release the following documents:

• Personal notes.
• Information regarding a minor older than twelve if the minor objects.
• Information that your doctor believes will cause substantial harm to you or others.
• Substance abuse records.
• Mental health records.
• Information being compiled by the provider for a lawsuit.

The differences between Medical Records/Electronic Medical Records (MR/EMR) and Personal Health Records (PHR).

Medical Records

A Medical Record (MR), often called an Electronic Medical Record or EMR, is maintained by your doctors and healthcare providers. It contains information about your health compiled during your visits and treatments, and it is often accessible via an Internet website or portal. Regardless of your preferences and comfort with technology, federal law requires health care providers to make copies of your medical records, including hospitals, pharmacies, nursing homes, and your health plan, to be available to you in a timely manner, and at a reasonable cost.

More health insurance providers, hospitals, and medical practices are using electronic medical records than ever before. Much of this move to store, organize, and share information electronically is driven by payment reforms and incentives from the federal government. One might think that this should solve the problem of being able to access your medical information whenever and wherever needed. Unfortunately, that is not always the case, and it makes no sense to rely on slow and sometimes inaccurate systems when your health and well-being are at risk.

Getting Your Medical Information

Here is how:

• Identify Providers: List all the doctors, hospitals, and treatment providers you want records from.
• Contact Each Provider: Ask if they have an “authorization” form to release medical records. Many providers have these forms online, or they can send them to you.
• Complete and sign the authorization form. Be specific about the information you need.
• Submit the Form: Mail or email the completed form to the provider.
• Provide Identification: You may need a photo ID when picking up your records in person.
• Request at Appointments: When checking in for future appointments, tell the receptionist you want copies of your records, including notes, tests, and images.
• Fees and Timelines: Inquire about any fees associated with copying records. Providers can charge reasonable fees, but state laws may limit these charges. Also, ask when you can expect the copies to be ready. While providers legally have 30-60 days, most provide them sooner.

Types of Reports to Request

When requesting medical records, consider asking for these specific reports:

• Identification Sheet: Your basic information from registration.
• Problem List: A list of significant illnesses and operations.
• Medication Record: A list of medicines prescribed or given to you.
• Medical History: Describes any major illnesses and surgeries you have had, any history of diseases in your family, and current medications.
• Physical: Identifies what the doctor(s) found when they examined you.
• Progress Notes: Notes made by the doctors, nurses, therapists, and social workers caring for you reflect your response to treatment, their observations, and plans for continued treatment.
• Consultation: An opinion about your condition made by a physician other than your primary care physician.
• Physician’s Orders: Your physician’s directions to other members of the healthcare team regarding your medications, tests, diets, and treatments.
• Imaging and X-ray Reports: Describe the findings of x-rays, mammograms, ultrasounds, and scans. The actual films are maintained in the radiology or imaging departments or on a computer.
• Lab Reports: Describe the results of tests conducted on body fluids.
• Immunization Record: A form documenting immunizations given for disease.
• Consent and Authorization Forms: Copies of consents for admission, treatment, surgery, and release of information.
• Operative Report: A document that describes surgery performed and gives the names of surgeons and assistants.
• Pathology Report: Describes tissue removed during an operation and the diagnosis based on examination of that tissue.
• Discharge Summary: A concise summary of a hospital stay.

The following forms will be the most useful for keeping your medical history:

• Initial history and physical examination.
• Consultation reports from specialists.
• Operative reports: (if there is surgery involved).
• Test results.
• Medication lists.
• Discharge reports (if you are staying in a medical facility or nursing home).

Tip: If you are denied your medical information, you can appeal that decision to your State Health Department.

Personal Health Record

A Personal Health Record (PHR) is maintained by you. It is a comprehensive collection of your health information, including data from your medical records, as well as information you add, such as over-the-counter medications, lifestyle information, and personal health goals.

Why Keep a Personal Health Record?

• Better Diagnosis and Treatment: A complete and up-to-date PHR helps your doctors make accurate diagnoses and prescribe the most effective treatments quickly. Imagine how much easier it would be for your doctor if they had immediate access to your medical history, including past surgeries, test results, and medications!
• Improved Communication: A PHR facilitates clear communication between you and your healthcare providers. It serves as a foundation for asking questions and discussing your health concerns.
• Reduced Errors and Duplication: By providing a comprehensive health history, a PHR can minimize mistakes, prevent duplicate tests, and avoid unnecessary costs.
• Emergency Preparedness: In emergencies, a PHR can provide vital medical and contact information to healthcare providers, even if you are unable to speak for yourself.
• Empowerment: A PHR enables your healthcare providers to know that you are actively involved in your health and healthcare decisions.

What Information Should I Include in My PHR?

Your PHR should include anything that helps you and your healthcare providers manage your health. Here is a checklist of essential information:

Basic Information

• Your primary care doctor’s name and phone number
• Emergency contact information

Insurance information

• Health History
• Summary of current and past health problems
• Major surgeries with dates
• Allergies (including drug allergies)
• Medications (prescription and over the counter), including dosages.
• Chronic health problems (e.g., high blood pressure, diabetes)
• Two- to three-year summary of office visits to health providers
• History of illnesses and treatments

Key Health Measurements

• Cholesterol levels
• Blood pressure readings
• Blood type

Advance Directives

• Do Not Resuscitate (DNR)
• Living Will
• Advance Directives
• Medical Power of Attorney (MPOA)

Organizing and Storing Your PHR

There are many ways to organize a PHR. Choose a method that works best for you:

• Paper-Based: Use file folders to organize your documents.
• Digital: Scan documents and save them on your computer, a portable drive, or a secure cloud storage service.
• PHR Software/Apps: Utilize specialized software or apps designed for managing health information. Some patient portals offered by employers or health insurance providers may also offer PHR tools.

Tip: Regardless of the method, label each record with the date and provider name for easy retrieval.

Maintaining and Updating Your PHR

• Update your PHR after every doctor’s visit, test, or change in medication.
• Create a “Health History Summary” document that contains key information from your medical records. Update this summary regularly.
• Create a portable traveling version of your PHR with essential information on a thumb drive or in print. Keep it in your purse or wallet for emergencies. 

Important: Exclude sensitive information, such as your Social Security number and driver’s license number, from your travel health record.

Sharing Your PHR

If you plan to share your PHR with healthcare providers, a digital format is often the most convenient and secure way to do so. Protect your PHR by using strong passwords and secure storage methods.

Resources and Further Information

• U.S. Department of Health & Human Services – Health Information Privacy: Information on your rights regarding your health information.
• National Resource Center for Health Information Technology: Resources and information on electronic health records and PHRs.
• Your State Department of Health: Contact them to learn about state-specific laws regarding medical records and fees.

Creating and maintaining a Personal Health Record is an investment in your health and well-being. By taking control of your health information, you can enhance communication with your healthcare providers, minimize errors, and make more informed decisions about your care.