My interview with Jen Romnes generated many emails. As you recall, Jen had difficulty locating her mother's whereabouts after the mother was admitted to a long term care facility. Her father - who had power of attorney, asked the long-term facility and other health agencies not to divulge the whereabouts of Jen's mother. He later relented and gave permission to release that information to Jen.
Bill Gould writes: "While I sympathize a bit with the woman seeking her mother, I think the system worked exactly as it should have. While her motives were honorable, she's the only one who knew that for sure. No one else could be positive she was completely sane or didn't have ulterior motives. It wouldn't be the first time that someone searched for an estranged relative in order to do them harm or talk then into changing a will. Only the most persistent and altruistic should have the success she did under similar circumstances."
Bill, Ann Cavoukian, the Ontario's Information and Privacy Commissioner, said much the same thing when we asked her to listen to and comment on Jens' story. You'll hear Ann Cavoukian's comments on this week's White Coat, Black Art on Saturday January 15 at 11 am (1130 am NT) and again on Monday, January 17 at 1130 am (330 pm NT) on CBC Radio One.
Some of you agreed with the notion privacy concerns are sometimes taken too far. Wolf Kirchmeir of Blind River, Ontario sent us this: "As a patient, I think the fear of breaching patient confidentiality has become paranoid. As a member of my family and community, I want as many people as possible to know that I'm in the hospital, and I don't care whether they know what my condition is. It's absurd that I have to give explicit permission to allow certain visitors. As a patient, I want as many people as possible to know about me. Why? Because once in a while, someone outside the "circle of care" will recognise something, or know an odd and/or obscure fact that clarifies the diagnosis and/or treatment. The elevator is of course one place where this can happen. I'd be happy to have the whole act scrapped. It does far more harm than good. We can always restrict the spread of information by telling our circle of care who should not be informed. That's enough protection."
Katharine Blair of Toronto sent us this email: "As the parent of a child with a disability resulting from a genetic disease, I have spent a good deal of time in hospital. What continues to amaze me is that prior to entering my daughter's room at morning and afternoon round the 'team' gathers in the hall to discuss her condition and pick a direction for the day. Why is it okay to break confidentiality in this way and what do they need to discuss that they are willing and able to share with the people in the hall but that cannot be revealed to the patient and her family? During one admission, I had a suspicion that my daughter's daily intake and output numbers were not being recorded properly, a problem since the numbers would determine my daughter's release date from hospital. I took a look at the flow sheet on the clip board outside her door. This is something I do fairly routinely when we're in hospital, as I do at home, so I can gauge how best to approach her care for the day. I was surprised when my daughter's nurse approached and told me that it was hospital policy that I not look at the chart without a nurse's assistance. I promptly showed her how she had misrepresented my daughter's condition on the chart and asked how I was to ensure that she got the best care if I was not included in the process. Maybe this is not a big issue for the average patient but it disregards those of us who act as our children's primary health care providers on a daily basis and do, in some cases, know their needs far more than the hospital staff."
Caroline Knowles of Vegreville, Alberta talks about the lack of privacy in the ER, something about which I know all too well. She writes: "The curtained bays in the ER or outpatient department provide visual privacy only. Medical personnel and their patients have to speak to one another, and the patient in the next bed can't help but hear what's going on in adjoining bays even if the conversations are quiet. I have spent a fair amount of time in ERs in the last couple of years and sometimes, because I live in a small town, I recognize another patient and hear more than I actually want to know. We all realize that we give up a large degree of privacy when we are being treated in a hospital. This is not to say that medical personnel should ever talk about their patients in public, however coded their language, but rather that there are limits to privacy and generally we should all, patients, medical personnel, anyone privy to sensitive information, be guided by common sense."
At least one person suggested there may be less than honorable reasons why institutions cite privacy concerns. Jennifer Cohen of Regina writes: "I think people responsible and who hold confidential information frequently hide behind the laws rather than thinking about how they can release information that would be helpful, if released."
There was more than ample evidence from other emails that patient privacy needs to be taken more seriously.
Margot Stothers of London, Ontario sent us this first person account: "Just over 3 years ago, I had surgery and was hospitalized for more than a week after spending a few days in the intensive care unit (ICU). I had a private room just across from the nurses' station, so I was privy to a lot of conversations that I would rather have not heard. One evening, I was dozing and awoke to a loud conversation about a difficult patient. The comments being made about one of the patients made her easy to identify - her size, her condition, her complaints, and her frequent use of the call button. I raised the breach of patient privacy with the first nurse I saw afterwards. I simply said that I was uncomfortable and asked whether it could be avoided. The nurse was unimpressed. She looked at me with some disdain, as if to say "you know absolutely nothing", dismissed my comment with a short "don't worry about it", and left as soon as she could I raised it again with one of the night nurses, who was somewhat more sympathetic. She explained that there was no one available to staff the nurses' station during the shift change, so they had to leave the door to the conference room open. I said I understood, but that it didn't seem like a good solution, given how easily patients could hear what was being said. The second nurse didn't have a lot to say after that, other than hopefully it wouldn't happen again. It seemed that the conundrum was one of those you discussed in the show: safety versus privacy. But was it? Should under-staffing trump privacy? Should convenience? Should staff frustration? Having worked in a similar environment, I understand the need to vent with others about people whose behaviour makes your working life really difficult, and the frustration of having no way out of dealing directly with such people. It's such a relief to share those negative feelings, joke about them, and feel as if you're regaining some measure of control. But that sort of discussion should itself be private, without exception."
Mona Alper writes: "The issue that does concern me is that any person working in a hospital can swipe his finger and obtain information from a patient's records. I know this has happened because a family member who is a secretary in the hospital discussed a medical issue with me about someone. When I asked how she knew, she said that she had gone into the medical records. She is rather trustworthy and the person she was discussing was very familiar to her but this left me very concerned. I asked my child who is a doctor about this concern and I was told that that was a breach and that the hospital can and does checks on patients' records so this secretary could be asked why she was looking into the patient's file. But seriously how often and how carefully does this take place?"
Crawford Kilian of North Vancouver was once the unintended recipient of confidential patient information: "A year or so ago, we gave up our fax line because we kept getting misdirected medical faxes about patients' tests, depression, breast cancer, etc. A local physician's fax number was too close to ours (though we sometimes got faxes intended for doctors as far away as Smithers). I always called the originators; sometimes I got an apology, sometimes just an "oh." One lab director said the staff were just too overworked. But you'd think they could have compiled an automated fax list. Cheers and thanks for your excellent show."
Patti Moses of Kitchener, Ontario sent us this personal example of violated privacy. "In the spring of 2009, I ended up in the emergency ward of one of the local hospitals here with an abscess, and was assigned a bed as a 'hall patient'. Well, the long and short of this story was that I had a mental melt down and it was not a pretty site. I had no phone, no place for my support people to sit and every time the cleaners or others with carts went by they bumped my 'gurney', which was not an actual bed. It was loud, bright and very uncomfortable. When nurses, doctors and admininstrative staff spoke to me it was basically, in my view, a public conversation."
Carol Nicolls, listens to WCBA from Geneva, Switzerland. She writes: "As a Canadian living in Geneva, Switzerland for the past five years I can assure you that violations of patient privacy are an international phenomenon. When I first arrived here and didn't have a GP, I frequented my local drop-in clinic. On one occasion, the doctor was running late. As he ushered me into his office, he apologized for the delay and immediately launched into the medical details and difficulties of the previous patient that had required the extra time. This was a woman that I had seen leave his office not five minutes before. When our appointment finished, I was halfway down the stairs when I realized that I had forgotten my umbrella at the reception area. When I went back, I found the doctor leaning over the counter, chatting to the receptionist about MY medical details. I wish I had said something, but at the time I was new to the country and more importantly, too stunned to know how to react. I took my umbrella and never went back."
Mille MacCormack of Halifax sent us this: "As a retired provincial government employee, I am very aware of privacy issues since it was something that I needed to be considered in my contact with clients and public. I think the greatest privacy issue in hospitals is in the patient's room. If there are other patients sharing the room, they cannot help but overhear discussions between patients and the health care workers. Before my mother passed away a number of years ago, she spent some time in hospital. There were times that I learned about her contact with the doctors and nurses from other patients who overhear the conversations. I find your program really interesting and informative. Keep up the good work."
And finally, at least one health insider agreed with the point made on our show that privacy concerns may be stifling clinical research. Edmond Lemire of Saskatoon sent us this: "I am a Medical Geneticist and my practice is being adversely affected by the current Health Information Protection Act (HIPA) in the province. In Medical Genetics, we must review the family history in order to assess an individual's risk. Consequently, we tend look at our patients as families rather than individuals. We cannot do our jobs without breeching HIPA as it is currently being interpreted in Saskatchewan. However when I read it, I see no problem with what we are doing as it is for the benefit of the patient. One of our most common referrals for is cancer, either a personal or family history of it. In order to assess the person's risk, we must review the pathology records on any family member with a cancer to see if they or their family are eligible for genetic testing. Only when we have this information can we provide accurate genetic counselling to our patient and offer testing if indicated. Previously we had access to the Cancer Registry, but this was revoked because of an unrelated breech of privacy which caused the Saskatchewan Cancer Agency to become "gun shy" so to speak. We have been in negotiations for over 4 years now to regain access to the registry. Ironically most of the cancer referrals come from oncologists who work for the Cancer Agency. It appears that we will be signing an agreement with the Agency soon for access to the registry. It will require our patients to contact their family members for permission to access their records. If the family member agrees, we get them to sign a release of information form and access the records. If the family member refuses, the patient informs us and we go on to sign an affidavit saying that we did all we could to obtain the patient's consent and that it was denied. On that basis we can access the records. This will likely be a drawn out process. And what about family members who are estranged and do not wish to contact their relatives. There is nothing that we can do about this as this will not allow us to access the registry. A bit bizarre isn't it? If someone refuses to give their relative access to their personal health records, we can then access their records. If someone refuses to contact a family member for whatever reason (e.g. a restraining order), we cannot access their records. I have discussed this with our health region's privacy officer and she will be bringing up my concerns in the latest negotiations to update HIPA. I am not holding my breath that any significant changes will occur in the near future. With the ever increasing importance of Medical Genetics in clinical care, it is paramount that we resolve these issues before we can no longer do our jobs effectively."
This is an issue we will be following. Thanks to all of you for writing in.