Should patients have better access to their medical records?

Patients are increasingly interested in reading the information in their own medical records.

Canadian laws and existing technologies support this in principle.

However, most patients are not yet easily able to access their medical records in practice.

Canadians today have easy access to a range of systems that store their personal information. The difference between banking, where Canadians can not only access, but also manage their private financial information from anywhere, and health care, where much of the information is still paper-based and patients must request access to their own records on a case-by-case basis,  are striking.

Current approaches to accessing patient charts

Canadians have legal rights to access their personal health information and medical record. The Personal Health Information Privacy Act, passed in 2004, opened the door for greater access to personal medical records. In Ontario, the College of Physicians and Surgeons has a policy that all information in the medical record must be released to patients upon request, with a few small exceptions.

Many patients are not aware of their rights to their records. As well, while most patients express an interest in reading their medical record when offered the chance, a study published in 2002 found that less than 1% of patients or families in the United States and Denmark spontaneously submit a request to review their record.

For most patients who do request a copy of their records, the process is onerous. Perhaps even more frustrating is that the results are often confusing. The records provided to most Canadians who request them are usually a photocopy of many documents in the patients’ chart. They can be difficult for a non-medical professional to understand, with chart notes written in medical jargon and scribbled in shorthand.

In the age of email, e-banking and e-commerce, patients who are aware of their data rights are becoming increasingly disenchanted with the quality and accessibility of their medical records and are starting to advocate for better access.

Calls for better access

Patient Destiny, a Canadian group advocating for better patient access to personal medical information argues that there is a quiet revolution of patients demanding access to their health information. Proponents of this approach suggest that if patients have access to this information, health care costs will be reduced. They also argue that access to their record will improve their care, and allow better communication with health care providers across the system. Barry Stein, a patient advocate and colon cancer survivor argues that having access to an electronic medical record will help improve information transfer between providers, institutions and jurisdictions, saying “not only will it help me as the patient; it will help and improve the care provided wherever I am.”

Providers Concerns About Patients & Their Charts

However, some health care providers are more cautious about the likely benefits of greater patient access to their medical records. They are skeptical that health care costs will be reduced. As well, one internal medicine specialist, who asked not to be named, worries about his patients receiving “information without interpretation”, saying that without the clinical knowledge and context, patients may not be able to effectively interpret results of medical tests and scans that show up in the chart. While this doctor thinks that patients having access to their charts is “in principle, a good idea” he believes that there has to be “public education and engagement about what to expect when looking at your medical record”. However, at least two studies have shown that cancer patients and patients in primary care appreciate receiving copies of their medical records, and that the practice of providing them with these records rarely caused undue anxiety.

Some advocates for access to electronic health records say that a cultural change in medical practice is necessary to get buy-in from front line providers for an electronic, patient-accessible record. In the near future, with a new generation of computer-savvy doctors who are used to wide sharing of information at patients’ bedsides, there may be less opposition to sharing records. One doctor who practices at a teaching hospital we spoke with said “I tell trainees – you are putting things down in the chart that your patient could one day read, so be careful how and what you document”.

Moving forward

A study from 2008 found that just over half of hospitals in Canada have some form of electronic health record. The same study found that the main barrier identified by hospital administrators to providing patients with access to an electronic health record was financial, followed by concerns about patient computer literacy, privacy concerns and clinician buy in. A large-scale national, or even provincial, investment in electronic medical records may not occur during this era of cost containment in health care, as it was estimated in 2007 that a national electronic health record would cost Canadian taxpayers $10-12 billion.

Rather than wait for a large-scale change, some organizations are forging ahead with providing patients with access to some of their medical information. Grand River Hospital in Kitchener-Waterloo has been offering patients access to an online portal, My Care Source since 2004. My Care Source provides appointment management, some personal health record and other tools for disease management to patients. Dereck Birtch, Decision Support Consultant at Grand River Hospital says My Care Source helps build online communities for patients. It was first piloted with breast cancer patients who use the portal to access  information and join chat rooms to talk with each other. Craig McFadyen, a surgeon and Vice President of Cancer Services at Grand River Hospital says that breast cancer patients are among the largest utilizers of My Care Source as they are a “highly motivated and highly engaged patient population, who see electronic solutions as part of their health care”. While McFadyen notes that My Care Source was mostly accessed by a relatively small patient group, he believes that “there is a future for this technology, as this is the way we are going to bring the patients and all members of the health care team to have access to the same information, at the same time.”

Sunnybrook Health Sciences Centre in Toronto also has been providing an online personal health record management service, called MyChart to patients since 2006. MyChart provides patients with online access to test results, some medical history appointment management tools and diary personal health information. Sarina Cheng, director of Health Data Resources & Information and Telecommunications at Sunnybrook, says that what is unique about MyChart is that “it goes beyond clinical information”, as many patients use MyChart to “set up their own personal health record and track personal health information such as family history and medication history.”

While neither of these initiatives are new, the roll out and uptake of these programs has not been on a large scale, and the personal health information they provide is still limited. However, many providers like McFadyen suggest that these tools are helping to push for a change in the culture of health care.

Mike Evans, a family doctor at St Michaels Hospital agrees, saying “health care is all about communication” and as information technology, from smart phones to ATMs, becomes ever more present in daily life, the health care system, patients and providers, will need to catch up with the Information Age. But Evans warns that broader access to information will not come without hard work by providers to contextualize this information, and that “we as providers need to get better at putting this information into perspective for patients.”

The comments section is closed.

  • Sonja Beirnaert says:

    I want to comment on Harrison…Yes, the drugs should Not make the doctors better by getting gifts, it should be used to make the patient better. But all these drugs are just made to make the producers richer and not the sick ones better, we should all go back to the natural herbs and herbal healers and help them with their fight to have the right of existance…because … we, as a patient should have the right to decide what kind of healing we prefer…the chemicasl or the natural. Because not only the medicin is created not to heal us, but just make others more and more rich every day….but also food is played around with, sothat we get for sure some kind of desease when we keep eating it for a long time….sugar…colours….shall I keep going on…Be awared about what you eat….that is half of the cure to stay healthy….and it is getting more difficult every day to find the clean food as I call it. Sorry if I wrote some English mistakes…Yes I do have an English 30…..but right now I am to passioned to be to much about the English….Love you all good people of Canada ….Sonja Beirnaert

  • Sonja Beirnaert says:

    I can not believe that this is possible in Canada. My parents moved from Ontario to Manitoba and they asked for their medical history to take with them and it was refused to them. Now they each have to pay 50.00 to get their medical reporst sent. We have a right to know about our own bodies and also I think that it should not cost that much money to give a patient a copy about their medical reporst. I can copy it for a much cheaper price, even at Staplers….rediculoussss…..just all about money and making the people their lives more frustating while they claim their rights to know about their medical conditions. Love, light and peace, Sonja Beirnaert

  • lia says:

    I’m an Ontario, Canada resident. I changed family physicians in Oct. ’09. My new family physician has stated that she is not interested in my medical file from the past. Instead, she wants to start a new chart. I have lots of health problems and find this odd that she doesn’t want my old file. Since then, I’ve been in touch with the Office of the Commissioner of Review Tribunals regarding collecting CPP disability. My court date is in July of this year and they’re telling me it’s important to get my health history.
    My questions are… Can I get my old medical file and keep it myself if my new family physician doesn’t want it? Do I have the right to get and keep the file? If I can’t; will it eventually be destroyed? If so, when?

    • Karen Born says:

      Thanks for your comment. The College of Physicians and Surgeons of Ontario has policies around medical records on their website.

      I’ve copied the section most relevant to your request. In most cases, patients can get, and keep, a copy of their medical records by a request to their doctors office. Patient records are not allowed to be destroyed within 10 years of the last record. Good luck accessing your record, you can always contact the College of Physicians and Surgeons of Ontario for more information

      Patient Access to Records
      Generally speaking, all information contained in the record must be released to patients upon request, including letters from consultants, even when such letters are stamped or indicated as confidential documents. However, in very limited circumstances, physicians can use their discretion and refuse to provide patients with access to their records. Physicians should consult section 52 of PHIPA for a comprehensive list of such circumstances. Examples include situations where the information was collected for use in a proceeding (e.g., a proceeding in a Court or before a committee of the College), or where granting access could reasonably be expected to result in a risk of serious bodily harm.

      Physicians cannot refuse to grant a patient access to their records for the purpose of avoiding a legal proceeding.

      If a physician has refused a patient access to his or her medical record, the patient has the right to challenge the physician’s decision in Court under subsection 54(8) of PHIPA.
      6. Retaining and Transferring Medical Records
      Generally speaking, physicians must always keep the original medical record themselves. Only copies of the record should be transferred to others.

      Retaining Medical Records
      Regulation requires that physicians keep medical records for a certain period of time. For adult patients, the rule is that records must be retained for 10 years from the date of the last entry in the record. For patients who are children, the regulation requires that the physician keep the record until 10 years after the day on which the patient reached or would have reached the age of 18 years. However, it is prudent to maintain records for a minimum of 15 years because, in accordance with the Limitations Act, some legal proceedings against physicians can be brought 15 years after the act or omission on which the claim is based took place.11

      Physicians may also be required to retain records longer than the above time periods when they receive a request for access to personal health information. Where such a request has been made, physicians must retain the personal health information for as long as necessary to allow for an individual to take any recourse that is available to them under PHIPA.

      The retention rules are different for physicians who cease to practise medicine, please see below for more detail. See Appendix A for the applicable regulation.

      Patient Requests Transfer
      If a patient requests that a physician transfer his or her records, the transfer should take place in a timely fashion. The physician may charge the patient a reasonable fee to reflect the cost of the materials used, the time required to prepare the material and the direct cost of sending the material to the requesting physician.12 Prepayment of the fee for a transfer of medical records may only be requested when, in the best judgment of the treating physician, the patient’s health and safety will not be put at risk if the records are not transferred.

      In some circumstances, it will be desirable for the transferring physician to prepare a summary of the records rather than to provide a copy of the whole record. This is acceptable to the College as long as it is acceptable to the receiving physician and the patient. The physician is still obligated to retain the original record, in its entirety, for the time period required by regulation.

      The obligation to pay the account rests with the patient or with the third party who has requested the records. Fulfilling such a request is an uninsured service and reasonable attempts may be made on the part of the physician to collect the fee.

  • Linda Murphy says:

    Nice to see attention on this issue. I have two comments:

    1) from a personal perspective – at my request, my medical reords were transferred to a new GP when my former one retired. My new GP reviewed my file with me and we were shocked by the omissions (incl two surgeries, broken arm, test results related to cancer)!

    2) as a caregiver – my parents both have Alzheimer’s and it has been a real challenge consolidating their health information (they are in their mid-eighties and lived in eight different countries during my dad’s work life). After two years managing their affairs, I am still discovering new information for their medical history!

    I have always believed in electronic health records and I am shocked (not really , given politics in this area; but honestly!) that we are not further ahead on this even after enormous investments at the federal and provincial levels – esp weighed against the potential benefits of access across providers (professionals and hospitals) as well as individuals and their caregivers. It certainly could make the communication loops simpler across multiple providers … and then there is the opportunity to support research better …

    • Karen Born says:

      Thanks for this great comment, and for sharing some of your personal experiences Linda.

    • Tom Auger says:

      I was shocked when my wife and I changed GPs – we were charged $80 EACH to transfer our records. I contacted the College of Surgeons and Physicians to ask them about their recommendations or guidelines around medical transfers and they indicated it was reasonable to charge about $1 a page. In this electronic age I don’t get it. Upon verification with my new doctor, it does turn out that my medical record, which was sent as a PDF, was over 50 pages! So there was some good detail there.

      However, I feel that this information is my property. In fact, it is much more my property than, say, my credit records, in that this concerns my very health and well-being.

      Regardless of the more abstract or philosophical aspects to this question, from the simple perspective of seeing (and verifying) what information is being kept, communicated and transmitted about you could help catch many of the omissions that Linda mentions in her comment.

      Great topic. I look forward to hearing what others have to say about it.


Karen Born


Karen is a PhD candidate at the University of Toronto and is currently on maternity leave from her role as a researcher/writer with

Andreas Laupacis

Editor-in-chief Emeritus

Andreas founded Healthy Debate in 2011. He is currently the editor-in-chief of the Canadian Medical Association Journal (CMAJ)

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