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”.
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.”