PHOTO: METROPOLIS STUDIO

Your insurance company wants to know if you’ve ever had jaundice.

Your children want information about a blood disease that runs in your family.

You want to find out if you’ve ever been prescribed a medication that’s now making headlines for long-term side effects.

Unless you have a perfect memory, you likely can’t recall these sorts of details off the top of your head. So where do you turn?

The most likely place to find this information is in the medical records maintained by your family physician and by hospitals where you’ve received treatment. By law, every health care provider is required to maintain certain information in a patient’s medical record to ensure continuity of care, including the patient’s health card number, progress notes, consultation notes, records of any surgery, lab reports, results of diagnostic tests and pathology reports.

“These are critical documents that every patient has,” says Gail Crook, executive director and registrar of the Canadian Health Information Management Association, which represents workers who maintain medical records.

In 2004, the federal Personal Information Protection and Electronic Documents Act (PIPEDA) came into effect. Under PIPEDA, or under “substantially similar” legislation in several provinces, you have a number of rights in relation to your medical records, Crook explains. First, you have the right to expect that medical professionals will collect and record only the information necessary to your care, and keep it confidential. You have the right to know who has seen your file. And, vitally, you have the right to see it yourself.

A landmark 1992 Supreme Court of Canada case, McInerney v. MacDonald, confirmed the rights of patients to see–but not keep original copies of–their medical records. “The Supreme Court of Canada case was pretty definitive in saying that the information belongs to the patient, but the paper it’s written on belongs to the physician,” says David Fraser, a lawyer with the Halifax firm McInnes Cooper who specializes in privacy law.

Why might records be withheld?

Although the law is clear, you may find that some doctors and hospitals are reluctant to let you see your medical records.

For one thing, the duty to protect the privacy of medical records is deeply ingrained in most health care personnel, and for good reason. What would happen, for instance, if an employer learned that an employee had a chronic health problem that might eventually cost the employer money? If parents found out their daughter had had a secret abortion? If the media learned that a prominent politician had once received treatment for a drug addiction? The potential for lawsuits and other complications is almost endless. “There is no debate that medical information is among the most sensitive personal information and diagnostic information is even more sensitive,” Fraser wrote in the March 2004 issue of Canadian Privacy Law Review.

It’s fairly obvious why records should be kept out of the hands of third parties unless the patient gives consent. But due to the anecdotal nature of some records, some medical professionals have been reluctant to show the records even to the patients themselves.

Before access to records became more open, notes in files “tended toward the narrative,” says Crook. Along with routine details of tests ordered and inoculations given, the record might include other observations.

For instance, the physician might note a suspicion that the patient is a victim of spousal abuse. That information might be useful to health care workers treating the patient, but the patient might be offended–or worse–to see it in print, leading to a breakdown in trust between patient and doctor.

Since the 1992 Supreme Court decision, however, many health care professionals have avoided making such notes in the medical record, observers agree. “Because people are more likely to look at their records, they need to be much more diligent about what they record,” says Fraser.

As a result, reluctance to provide records due to fears that patients will react emotionally to the information in them is fading with time. And the law still gives health care workers the right to withhold certain information in the file if they think it will interfere with the patient’s treatment or harm a third party, although they must be able to justify doing so. In reality, “there’s very little these days that is withheld,” Crook explains.

Medical personnel are also very careful with health files because it is illegal to alter a record by removing or changing information. As a result, health care workers are understandably loath to let original files out of their sight, due to the risk that the patient might tamper with them.

Fraser lists a few other reasons for refusing access to all or part of a medical record. First, some information–such as letters between a doctor and a lawyer related to an impending lawsuit–may be protected by solicitor-client privilege.

Second, disclosure might reveal a third party’s personal information. For example, a wife might tell her family physician that she was once treated for a sexually transmitted disease. The doctor might record that information in the husband’s file for future reference, in case he develops symptoms of the disease, but could not reveal it to the husband without breaching the wife’s privacy.

Third, if a death or injury at a hospital has led to a quality of care investigation, records of that investigation will likely be kept private, says Fraser.

Investigators want staff to be as candid as possible, so that the hospital administration can determine what happened and stop it from happening again. In such cases, courts usually rule that the greater good–preventing future harm–is more important than a patient’s right to information.

How to get access

Despite the medical community’s good reasons for keeping your medical records private in certain circumstances, you may need to see them–and you have the legal right to do so in most cases. So how should you go about getting access to your medical records?

First, you need to know where the records you want are held. In most cases, your family physician will have the most complete record.

However, you may also need to contact a hospital or a specialist to get the information. The Department of National Defence maintains records of health care it has provided to military personnel and their dependants.

If, as is likely, your family doctor holds the records you need, your first step is to politely ask your doctor to show you the record. You may need to put your request in writing. In most provinces, the doctor has 30 days to respond to your request–to provide your file or at least tell you the status of your request. If the doctor’s handwriting in the file is illegible, he or she must provide a legible transcript. And if you are legally blind, the record must be converted to Braille.

You may be required to pay a fee for access, particularly if you want a photocopy of the record or if the doctor regards your request as frivolous (for example, if you want to know the exact time you were born so you can get an astrological chart). PIPEDA stipulates that this fee should be minimal at most, but doesn’t set fees.

Be aware that the files you are seeking may no longer exist. Each province has different rules regarding the length of time doctors are required to keep your medical record. If it’s been 10 years or more since you visited that physician, the records may have been destroyed. (See sidebar.)

If the file still exists, and you’ve gone through the steps above but have been denied access to your file without justification, contact your provincial college of physicians and surgeons, or provincial medical association. Someone from one of these bodies may be willing to contact your doctor to clarify the laws governing access.

You could also contact your provincial privacy commissioner or ombudsman, says Crook, adding that these offices can usually provide you with printed information on your rights that you can bring to your doctor’s attention. And Fraser points out that in some provinces–including Alberta, British Columbia and Ontario–privacy commissioners have the authority to issue orders to provide information

Granting access to others

In most cases, you will be able to see your own medical record after taking these steps, unless there are serious extenuating circumstances. But what if you want to give someone else access to your file?

If the third party is another medical professional directly involved in your care, the process is usually straightforward because your consent is implied. If your doctor has requested the other person’s involvement, that person will generally pay any fees associated with transferring the file. However, if you have instigated the process, you may be required to pay the fees.

Insurance companies may also ask to see your medical records. You must explicitly grant consent for such access, and privacy lawyer Fraser warns patients to be cautious in such situations. Don’t sign any document that gives the insurer carte blanche to see your entire file. Instead, ensure that any consent relates only to those parts of your file that are relevant to your insurance coverage or claim.

Finally, what if you are the one seeking access to someone else’s medical records–usually the file of a family member? This situation can be complicated.

Seeking children’s records

Max Pinsky’s daughter Rina was born in July 1998 with cystic fibrosis and spent the first seven months of her life at B.C.’s Children’s Hospital in Vancouver. Her family regularly asked hospital staff if they could see Rina’s medical chart.

“As the parent of a very sick infant, what I really needed and wanted was accurate and timely information,” says Pinsky.

However, access procedures weren’t standardized. One hospital staffer might cheerfully provide access to the file one day, while another might withhold it the following week. “It really varied from unit to unit,” Pinsky explains.

Several years after Rina came home from the hospital, Pinsky became involved in an initiative spearheaded by Partners in Care, the hospital’s parent advisory group, to make access to records more open and systematic. A task force including doctors, hospital staffers and representatives from Partners in Care was struck and began a year and a half of delicate negotiations

Laws governing access to minors’ health records are murkier than those related to patients’ access to their own files. Parents and legal guardians can view files for very young children. But once minors are old enough to make informed decisions about their own care, they have the sole right to see their file and grant access to it. However, in many provinces, including B.C., no law spells out the age at which those rights shift from the parents to the child.

Despite such complications, the task force crafted a policy that clearly explains everyone’s rights and the procedures for providing access. It seems to have satisfied doctors, hospital staff and parents. Dr. Derryck Smith, who chaired the task force, reports that he has received no complaints about the policy since it was put in place.

If you are seeking your child’s medical records, check with your province’s privacy commissioner to find out whether there is a legal age at which responsibility shifts, and find out whether any hospitals involved in your child’s care have a specific access policy.

Seeking records of other family members

Getting access to the records of other family members can be even more complicated.

When Carol Thorbes’s sister Dawn Raymond was diagnosed with breast cancer, Thorbes wanted to understand everything she could about Raymond’s treatment. But she had no right to see her sister’s medical records without Raymond’s permission. Unfortunately, as the disease progressed, Raymond was often heavily sedated and incapable of giving consent.

Raymond passed away in spring 2004. Sixteen months later, while undergoing a routine mammogram, Thorbes learned that she has abnormal calcifications in the milk ducts of both breasts, a condition that can be a symptom of breast cancer.

Since breast cancer often runs in families, Thorbes is trying once again to get access to Raymond’s pathology report. If she can show a link between her sister’s cancer and her own health, she may be eligible for genetic screening.

To get access to the records, Thorbes is working closely with her sister’s executor and oncologist, and a family friend who holds Raymond’s power of attorney. Everyone is being very helpful, but the process is slow. “I’ve been spending three hours a day trying to resolve this issue,” Thorbes says. “It seems sort of surreal, and I think, ‘Why am I doing this?’ Well, it’s to save my own life.”

She’s also determined to pursue this cause to help her younger sister and niece, who may also be at higher genetic risk of developing breast cancer. Thorbes wants to make it simpler for them–for anyone, really–to get access to potentially life-saving information about family members.

“I guess I’m pushing to do it because I want to prove a point,” Thorbes says.

If you find yourself in a similar situation, she advises, be prepared to be patient, polite and dogged in your search for information, and make sure you know your rights. That’s good advice for anyone seeking access to any sort of medical records.

Province by province

Although federal laws such as PIPEDA and jurisprudence such as the 1992 Supreme Court decision apply generally across the country, provinces retain primary responsibility for health care. As a result, each province sets its own rules for things such as the length of time adults’ records must be kept (and minors’ records must often be kept even longer).

In addition, PIPEDA doesn’t apply to records kept in public hospitals, which are governed by provincial legislation. And even in situations where PIPEDA would normally apply (mainly, to records kept by doctors in private practice), some provinces have enacted “substantially similar” legislation that supersedes PIPEDA.

As a result, if you are encountering problems getting access to medical records, you should contact your province’s privacy commissioner to make sure you clearly understand the laws that apply in your province. Here’s just a sample of the different regimes that apply across the country.

British Columbia: Adults’ records must be kept for at least six years; provincial legislation supersedes PIPEDA.

Manitoba: Adults’ records must be kept for at least 10 years; PIPEDA applies.

Ontario: Adults’ records must be kept for at least six years; PIPEDA applies.

Nova Scotia: Adults’ records must be kept for at least 10 years; PIPEDA applies.