Personal Record-Keeping for Cancer Patients

What is a Personal Health Record?

A cancer patient’s legal medical record and personal health record (PHR) are two different records of information. The medical record is a comprehensive compilation of medical information kept by healthcare providers over the course of medical treatment visits or phases. A personal health record, also known as a PHR, is medical information compiled by the patient and can be used to assist in improving the quality of healthcare treatment plans.

A PHR is a way for a cancer patient to compile, track, and manage his or her own medical care information. An advantage of a PHR is that important medical information is always accessible and on hand.

When a patient is experiencing cancer, it is important that he or she keeps his or her own copy of a personal health records during all of the phases of the cancer treatment process. Even though physicians and cancer treatment centers keep a record of patient medical care, it benefits the patient to also keep an accurate record of care, since the patient is ultimately responsible for his or her health and treatment decisions.

A cancer patient should always keep his or her complete personal health record accessible, maintained, updated, accurate and comprehensive to be of the most benefit. The cancer patient should keep control over how the personal health record is used, accessed and how the information is divulged to others.

Why Should a Patient Keep a Personal Health Record?

Studies have suggested that the use of personal health records (PHR) may save billions of dollars. A report from The Center for Information Technology Leadership at Partners Healthcare System, states that using PHRs may potentially save the healthcare industry as much as between $13 and $21 billion a year in the United States.

In some cases, keeping patient information can save the patient money by making medical information readily available that may keep him or her from having to repeat some medical tests over and over. There are some cases where a patient may have to undergo repeat procedures. In these cases, the patient’s personal health record may give the health care provider inside information related to the patient’s medical history that may assist in outlining possible treatment options.

Personal health records may also include medical information that never makes it into a medical history record prepared by a physician such as hereditary illnesses, dietary habits or exercise routines. PHRs are not considered legal records since they are not part of a health provider’s medical records. They can never replace a legal medical record.

In 2003, the federal Health Insurance Portability and Accountability Act (HIPAA) required physicians and medical treatment facilities to give patients the right to access their own medical records. The disadvantage is that it can take up to six months for a cancer patient to receive his or her copy. This is an incentive for a cancer patient to keep a PHR in order just in case a situation comes up where he or she would need fast access to medical information. Also, the patient may be charged a fee for requesting a copy of his or her records.

The following are some of the primary reasons that a cancer patient should keep an accurate medical history record:

• Cancer patients may receive care from a variety of resources. Each keeps their own medical history on their patients. A personal medical history is a good way to compile all records into one complete medical history record.
• When a patient has a copy of his or her medical history, it is always available to the patient when he or she needs it. A personal medical history is an advantage especially when a patient has to transfer to a different treatment facility or physician. It can also be an advantage if a patient’s medical record gets lost or destroyed.
• A personal health record can be very important for patients that survive an incidence of cancer during childhood. The chances of an adult remembering important medical history information that can help later in life for long-term care may be difficult; a personal medical record can assist in recalling this important information.
• Personal health records make a patient feel as though he or she plays an active role in his or her own treatment process. It allows the patient to read and study the medical record at his or her own leisure and allows him or her to understand the information without feeling rushed.
• Having personal health records on hand assist the patient in management of health coverage claims, tax issues, any questionable matters or legal matters (i.e. life insurance or disability insurance).
• Having a comprehensive and accurate personal health record on hand may assist the physician by providing information he or she needs to outline the best treatment plans for the patient’s individual medical needs. This can play an important role in follow-up care as it relates to the patients original diagnosis and treatment, and any side effects from related cancer treatments.
• If a patient experiences a recurrence of a cancer, the documented details from the original diagnosis and treatment plan may assist a physician in the treatment options for the new episode of cancer.
• A personal medical record of cancer diagnosis and treatment may play an important role for those cancers that have a genetic factor as it relates to other family members and relatives such as children and siblings.
• A personal health record gives a cancer patient the ability to discuss health issues intelligently with his or her physician.
• A personal health record allows caregivers to have access to information. This can be especially helpful if the patient should become incapacitated for some reason.
• The accessibility of a personal health record makes medical information available during travel or relocation, or when a physician’s office is not available or closed.
• A personal health record allows a patient to monitor advancement toward his or her health-related progress and goals.
• Easy access to documentation such as physician instructions, medications, insurance information, allergies, or prescription is available when needed, especially in an emergency situation.
• A personal health record makes it possible to manage and track appointments, tests, vaccinations and other healthcare-related information that may be important.

Primary Medical Items to Include in a Personal Health Record

The personal health record should be as complete, up-to-date, and as accurate as possible in order to benefit the patient. The following are items that should be included in a cancer patients PHR whether it is compiled by the patient or a caregiver:

• The specific cancer type, the stage in which the cancer is when diagnosed, the actual diagnosis, location of the cancer (whether or not it has spread and areas it has spread), how the cancer may affect other organs and their functions
• - Diagnosis and treatment dates
• All copies of diagnostic tests (i.e. biopsy results), pathology reports, imaging tests such as x-rays, CAT scans, or MRIs, and lab report results.
• All treatment information such as treatment methods (i.e. chemotherapy, radiation therapy, surgery), and treatment locations
• All treatment results, treatment side effects, and/or associated complications
• All medication names and dosages and dosage modifications
• A list of significant illnesses
• Opinions from all specialists involved
• References regarding any counseling services received
• All supportive care information such as medications prescribed for pain or other side effects, and other types of care such as occupational therapy, physical therapy or exercise regimen
• All dietary support information such as a vegetarian diet, high protein diet or any changes made to the patient diet.
• A complete schedule for follow-up tests and results, or supportive care appointments and dates
• Contact information for all physicians, treatment facilities, hospitals, supportive care facilities associated with the patient’s cancer diagnosis and treatment

Other Medical Items to Include in a Personal Health Record

• The cancer patient’s personal identification information such as name and date of birth
• Family members, relatives or friends to contact in case of an emergency
• All health insurance coverage information
• Copies of medical power of attorney, living wills, or advance directives
• Organ donor authorization
• Any correspondence between the patient and any healthcare providers
• Any information regarding sensitivities or allergies to materials or drugs
• Any information regarding alternative health supplements or herbs
• Copies of all health-related financial information such as bills, receipts, and insurance co-pays or other fees paid (this may also include hotel stays or travel to locations for treatment, tests, etc.)

There are other items that should be included in a PHR to make it as comprehensive and useful as possible, including past medical history items. A patient’s past family doctor’s contact information, and a family medical history and hereditary conditions should be documented in the PHR. Any details about past physical exams, tests or vaccines and dates and details about chronic health conditions, major illnesses or hospital stays should be included for a complete record.

Compiling a Personal Health Record

A PHR is an overall snapshot of the cancer patient’s health record. The PHR can be a long, detailed record, or it can be brief and simple. There are important pieces of information that all PHRs should include regardless of their length and detail. It is not necessary to compile all of the health information at one time. Gathering information in steps may assist in the overall task. A cancer patient’s PHR should initially be created when a cancer diagnosis has been made if at all possible; otherwise, as soon as it is possible, even if the patient is in the treatment phase. The collection of personal medical information for the patient’s PHR is an ongoing process that should take place during all phases of the cancer incidence.

At the beginning of the information gathering process, a patient should request copies of all health records from all of his or her physicians, medical specialists, other healthcare providers, dentists and eye doctors. If a patient experiences a cancer incidence, he or she should request a copy of the test results and a procedure report when undergoing a diagnostic test or procedure. A patient should find out whether the records are in electronic or hardcopy format and find out what he or she needs to do to request copies of them.

During each doctor appointment, the cancer patient should request of copy of any new medical information added to his or her medical record. In addition, the patient should carry the PHR to all appointments and the document details about what transpired during the appointment. The entries can be made by the patient, a family member or caregiver, or the healthcare provider.

All hospital stays should be documented and added to a patient’s PHR. The patient should request a copy of the medical record when he or she is discharged.

A cancer patient should keep a health diary record of all symptoms and side effects from medications taken or from treatments. (such as chemotherapy or radiation therapy)

Copies of all medical bills and insurance claims should be added to the PHR to ensure all information is readily accessible if there is a question later in the process.

Even if a cancer patient fails to create a PHR early in the cancer treatment process, it is never too late to start one. The patient can begin compiling a PHR in later stages by doing the following:

• The cancer patient can call or write his or her oncologist and request a written summary of the current cancer diagnosis and treatment for the PHR.
• The patient should contact the physician’s office and the treatment facilities where he or she has undergone treatment or tests and request a copy of medical records on file from the visits. Patients may be required to request copies in writing or through completion of an Authorization to Release Medical Information form. It is not uncommon for most health facilities to charge a fee for the health record copies. The fee covers labor, postage and supply costs. It can take as long as 60 days before a patient receives the records.

Compiling a personal health record can seem like an overwhelming task; especially when the cancer patient’s condition is taken into account. It may help if a patient gets assistance from family members or friends. The patient may have to sign request forms; however, others can help by making phone calls or filling out forms. Doctors, oncologist, social workers, or medical record department workers of treatment facilities can assist in advising which records or forms are needed for compiling a PHR.

How to Organize and Store Personal Health Records

Organizing the PHR is important so that the information is easily accessible when needed; especially if there is an emergency situation.

After all of the personal health record information has been compiled, the PHR should be maintained. In most cases all information may not be available in an electronic format; therefore, it is best to have all records in a hardcopy format and organized into a three-ring binder. There are several ways to arrange a PHR. The information can be organized by sections that are broken down by date, or categories (i.e treatments, tests, doctors, appointments). The records may be kept in a three-ring binder, filing cabinet, file folders or a file box.

All electronic information can be stored on a portable device such as a keychain USB drive and can be carried or put in a safe place. Patients can add notes by using the computer and by having the ability to scan hardcopies into a computer file to produce an overall electronic version of the PHR. It is important to keep in mind that electronic versions should be backed up regularly onto a portable media type such as a CD or mobile Flash drive.

There are several tools and services available to help create and maintain a PHR. Some services are Internet-based applications that can be accessed from anywhere there is computer access. Other services are available to help patients gather the information for all healthcare providers. Some of these tools are free and others are subscription-based or have one-time fee. It is best for patients to look at all PHR tool options and decided which is best for his or her situation. Patients should be sure that an Internet-based tool of choice has security and confidentiality processes in place to help secure his or her information.

The patient’s PHR is confidential information and should be protected at all times. A patient may want to store a PHR in a fireproof home safe. Family members or a friend should be made aware that a cancer patient is compiling the information and where it is being stored safely in case of an emergency situation.

Important Information When Choosing a PHR Product From Another Party

More patients have been motivated to play an active role in creating PHRs since they get a feeling of control over their own health circumstances, and ultimately how healthy they will be. This encourages patients to collect and share their own health information with their healthcare providers. In turn, this has encouraged healthcare providers, insurers, vendors and government to promote and create PHR products for patients.

The increased patient interest in PHRs has led to more available PHR products on the market. Some of these products are computer-based, Internet-based, and hybrid personal computer/Internet products.

If a cancer patient does not want to create a paper-based PHR of his or her own and prefers to use a service or product from a PHR vendor, he or she should be cautious when trusting another party to maintain health records. A patient should consider the comprehensiveness, accessibility and security of a PHR product.

Following are some important questions that should be considered when a cancer patient is looking for a PHR system:

• Does the PHR product provide all the information needed for a comprehensive personal health record?
• Is the information automatically added and what information is added to the PHR from other records (such as insurance, employment, or healthcare providers)?
• Does the PHR product allow the patient to delete, change, or add information? If so, how is this done?
• Does the PHR vendor have any ownership rights to the personal health information collected?
• Does the PHR vendor have the right to sell health information collected to any other entity and what reason? If so, does the patient have the right to specify what information can or cannot be sold?
• Is the health information used for employment or health insurance coverage decisions (such as insurance eligibility)?
• Who has access to the patient’s health information in the PHR?
• Can the patient request certain doctors, or other caregivers access to the PHR?
• How is the patient information protected from unauthorized use?
• Can the patient continue to use a PHR product if he or she is no longer employed or insured by the vendor?
• How can the patient transfer information to another PHR vendor?
• Are there any other costs to the patient if he or she gives access to a doctor or other caregiver?

PHR Product Providers

An important part of choosing a PHR system is based on the provider type. Healthcare providers, employers, or insurers may offer PHR products or services for little or no cost to promote the use of PHRs. A PHR vendor may offer a pc-based or online-based service for a fee.

The following are the advantages and disadvantages for different PHR provider types that a patient should understand before choosing a PHR product to use:

Employer sponsored PHR products: Some large employers supply their employees with PHRs so that it encourages them to take responsibility for their health and wellness. Employee-sponsored PHR systems may be available for a low cost and may be linked to the employer’s health plan. A disadvantage is that if the employee leaves the employer, he or she may not be able to take the PHR and has to leave it behind.

Insurance sponsored PHR products: The insurance industry has used PHRs to encourage more patients to take control over their healthcare. Insurer-based PHRs are usually free to the patient while they are enrolled in the insurer’s program. The disadvantages are that the patient can no longer use the PHR if he or she changes insurers and the insurer may be able to use the patient’s health information for other uses.

Provider sponsored PHR products: Some government entities offer PHRs to their enrollees and employees. (i.e. the Department of Veteran Affairs) An advantage of provider-sponsored PHRs may be that health information can be downloaded automatically, eliminating the need to input information manually. A disadvantage may be that the patient is not able to include health information from outside healthcare providers that may not be connected to the PHR network.

Independent PHR products: There are a variety of PHR products on the market that have different prices ranging from free to a monthly fee. Since the patient is paying a fee, he or she has overall control over the content, additions and access to the PHR. The disadvantage may be the cost and the responsibility the patient has to make sure the health information is maintained and correct.