Quebec’s health records are going digital. Recently, I along with other Montrealers received a letter in French describing the process, the timeline, and the implications.
The digitization of patient records will have an impact on the quality of our health care. The way doctors, nurses and pharmacists access and share our medical information will change. So will the levels of privacy and security that our medical information currently enjoys.
I started wondering about the ethical implications involving digital health records in general and Quebec health records in particular. I wondered whether the Quebec government has done an adequate job in informing the public about all the major changes that will occur in their health records. So I decided to take a closer look into all these questions.
According to the Quebec health records (QHR) website [1], which you can visit if you want an English version of the information, this new tool will centralize patients’ medical records with information such as drug prescriptions, results from lab tests, and medical imaging exams. It will allow this information to be shared by different health care providers (physicians, pharmacists, pharmacy technicians, nurses, clinic administrators, and medical records administrators).
There are two aspects to consider when examining the impact that the new QHR system can have on the privacy and security of patient information: The Digitization of Patient Records and The Centralization of Patient Records.
Digitization of Patient Records
Many patient records, such as medical images (X-ray, magnetic resonance imaging …), are already in digital form. The availability of such digital data has given way to great advances in medical research. For example, research in digital medical imaging and image processing techniques has improved the quality of these images [2], which in turn has allowed for better detection of diseases. The ability to process these digital medical images with computer software has also given rise to automatic methods of tracking pathologies over time. Such automatic methods have led to more objective and efficient drug research [3]: A Large amount of longitudinal data has become available to help track the effectiveness of drugs. This data is faster to manipulate because of computer software and is less prone to the inherent subjectivity that is associated with human data manipulation. More recently, molecular imaging has allowed for the visualization of biomarkers which have resulted in a more accurate evaluation of pathologies during clinical trials of pharmaceutical drugs [4]. Digital medical images have also led to advances in image-guided surgery, which can help improve the prognosis of surgical patients [5]: Three-dimensional models of organs and tissues can be built from pre-operative images allowing the surgeons to plan their procedure. Intra-operative images provide an update on the location and structure of organs and tissues during surgery, thus improving the precision of the operation.
The digitization of patient records has also increased the efficiency of medical care. For example, hospitals around Quebec have digital records of patients’ medical images. Due to their digital nature, these images can be more efficiently stored, transmitted and accessed with the help of new technology such as PACS (Picture Archiving and Communication System). This in itself is a step towards the centralization of patient data.
Centralization of Patient Records
The new system will provide more central access to both existing and new digital data. This renders the sharing of information between various doctors and health institutions more efficient. PACS is currently used for exactly such purposes, but there is no equivalent system that consolidates all of patients’ medical information throughout the province. My mother, a frequent user of the healthcare system, certainly welcomes a centralized system for health records. A few months ago she was rushed to hospital, suffering from what turned out to be bronchitis. Unable to breathe, she couldn’t immediately communicate to the emergency medical staff the list of conditions that she suffers from and the prescription drugs that she takes. Wouldn’t it be great if, any time my mom walked into any hospital in Montreal, physicians and nurses can access a system that immediately tells them what medication my mother is on? Wouldn’t it be great if they immediately knew which extra diagnostic tests to perform because of the risks involved due to her conditions?
But is it really necessary for them to know that she once used mint flavoured toothpaste to try to heal burns on her arms?
Our right to privacy
In order to help protect the privacy of the patients, not all health care providers will be granted the same rights of access. For example, only pharmacists will be able to recover electronic prescriptions from patient records. A complete chart of access rights is available on the Quebec health records (QHR) website. However, patients who do not opt out cannot have any specific medical information that they deem private omitted from their record. We share information with some health care professionals as we develop a relationship of trust with them over time. When this private information becomes a note in a digitized record, it is somehow trivialized as it becomes accessible to many other health care professionals that do not necessarily need it in order to provide us with proper care.
Potential breaches
Like any computer system, potential threats exist. When you get an MRI done, the data is stored on an internal and protected network in a hospital. The network, like any other, is susceptible to security threats. The same will go for other types of medical records. A 2011 New York Times article [6] examined records from the US Department of Health and Human Services [7] and concluded that over 11 million patient security breaches have occurred in the two years preceding the article. The breaches include but are not limited to theft, loss, unauthorized access, and improper disposal of paper records, laptops and other electronic devices, and networks [7].
The QHR has taken several steps in order to ensure the security of patient records. Health professionals seeking patient information must submit an official request to the provincial security authority (RAMQ), and they undergo identity verifications prior to obtaining access [1]. The data is encrypted and the QHR system is only accessible on specified workstations and requires regular authentication. The system also keeps track of all the users that have accessed patient information. With those security precautions in mind, do digital records enjoy a similar level of security when compared to paper records?
Circulation of Private Medical Data
Any digitization of data renders it easier to circulate. Have you seen the “Charlie bit my finger – again!” video on Youtube [8]? It is a video of an otherwise unknown boy (Charlie), biting the finger of another otherwise unknown boy. It’s cute. It has had 403.885 million views.
The same goes for any medical data – provided it would be of interest to someone in particular. With the assumption that there are no security breaches in order to obtain the data, then the only fear is that authorized health professionals willingly or unwillingly circulate the data. They can unwillingly circulate the data for example by copying unencrypted patient files onto their personal movable storage device and then dropping that storage device on the floor of a metro station.
Intentional Breach of Confidentiality
Health professionals that have access to patient records are bound by ethical rules and norms. The onus is on them to respect the norms and ensure that patient confidentiality in maintained, whether patient information has been obtained through paper files, digital records, or directly from the patient. I, as a researcher in medical imaging, have a responsibility to make sure that any patient images that I obtain remain confidential. A nurse seeing a person’s chart shouldn’t be talking about it to her friends over coffee. The centralization of records does render such confidentiality violations easier to perform. According to an article that appeared in the Vancouver Sun on December 6, 2011 [9], a pharmacist was fined 15 000$ for posting on her Facebook page medical information of patients that she obtained through Alberta’s electronic health care system. Then there is the ubiquity of cameras and cellular phones. Health care professionals can easily take pictures of any patient that they might find “interesting” and share it with the world, and some medical students have been doing just that. A recent New York Times article [6] addresses this issue and points out that even though anonymity of patients is maintained by omitting their name and face, patients are still sometimes able to identify themselves, which, according to the article, is “inappropriate and unprofessional”.
Our Right to Knowledge – Impromptu Poll in Cotes-des-Neiges
Patients have the right to access their files and to know who has accessed their files. Patients also have the duty to know and to exercise those rights. How informed are Quebecers about their health records? I went about conducting my own mini-investigation in order to see how much Montrealers know about the new QHR. I chose to conduct my limited, biased and unscientific Jaywalking style survey in one of the more ethnically diverse areas of Montreal, the Cote-des-Neiges area, where immigrants account for 52.4 % of the total population [4]. Given that the information was circulated to residents only in French, I wanted to see whether some of that immigrant population has been marginalized during the awareness campaign. According to the borough’s website, 25.7% of the population in Cote-des-Neiges does not speak French, and 3.7% of the population speaks neither English nor French, compared to 10% and 2.8% for the rest of Montreal [4]. I asked 34 Quebec residents (17 men and 17 women) of different age groups about their knowledge and opinion of the new QHR. Of the 34 individuals, only 11 have heard about it. Seven of those I interviewed did not speak French and none of them and heard of the new QHR. How much burden lies on the citizen to get informed about the facts? Is it only our duty to be vigilant or should government agencies ensure that the population is well informed?
Any new technology gives rise to new ethical questions and to new possibilities of ethical violations. Most often, the ethical threats do not lie in the technology itself but in the way that it is used. In the case of medical information, the risks mainly lie in the violation of patient privacy. It is my humble opinion that the benefits outweigh the risks.
For any information on the Quebec health records in English (or French), you can visit the following Dossier De Santé website.
[1] Le Dossier de santé du Québec. 6 Feb. 2012. Santé et Services Sociaux Québec. 5 Mar. 2012. http://www.dossierdesante.gouv.qc.ca/en_citoyens_confidentialite-1.phtml
[2] Dev Pradhan: “Multicore processors bring innovation to medical imaging” Texas Instruments. May 2010. Available: http://www.ti.com/lit/wp/slyy024/slyy024.pdf
[3] K. Licha, C. Olbrich, Optical imaging in drug discovery and diagnostic applications, Advanced Drug Delivery Reviews, Volume 57, Issue 8, 15 June 2005, Pages 1087-1108,
[4] Xue Meng et al. “Molecular Imaging with 11C-PD153035 PET/CT Predicts Survival in Non–Small Cell Lung Cancer Treated with EGFR-TKI: A Pilot Study”. Journal of Nuclear Medicine. October 2011, vol. 52 no. 10 pp 1573-1579.
[5] A. King, J. Blackall, G. Penney et al., “An estimation of intra-operative deformation for image-guided surgery using 3-D ultrasound,” in MICCAI 2000 (Pittsburgh, PA, USA), pp.588-597, Oct. 2000.
[6] Sack, Kevin. “Patient Data Posted Online in Major Breach of Privacy” The New York Times. Web. 8 September, 2011.
[7] Health Information Privacy. U.S. Department of Health & Human Services. 5 Mar. 2012. http://www.hhs.gov/ocr/privacy/hipaa/administrative/breachnotificationrule/breachtool.html
[8] ” Charlie bit my finger – again.” YouTube.com. YouTube, 22 May 2007. Web. 6 Mar. 2012.
[9] SINNEMA, JODIE. “Pharmacist fined for using personal medical records in Facebook spat” The Vancouver Sun. Web. 6 December, 2011
[10] Cohen, Randy. “When Med Students Post Patient Pictures” The New York Times. Web. 11 February, 2011.
[11] Portrait Sociodémographique de la Population. Territoire de l’arrondissement de Côte-des-Neiges – Notre-Dame-de-Grâce. 6 novembre 2009. Ville de Montreal. Mar 5, 2012. http://ville.montreal.qc.ca/pls/portal/docs/PAGE/ARROND_CDN_FR/MEDIA/DOCUMENTS/PORTRAIT_SOCIO_DEMO_2009.PDF
