Privacy and professional autonomy: challenges

Dean Giustini recently brought me to the attention of his readers on the Google Scholar blog which prompted some very interesting questions in the comments. I promised to respond to those questions here.

Q: The first question raised by Anon had to do with patient privacy, a question that was not raised at the CHLA conference and has in fact not come up at all until now. The poster expressed legitimate concerns over whether placing my consults in the patient charts* is "a violation of the librarian's code of ethics to keep questions confidential."

A: I completely agree that when I am in the library and a person approaches me with a question it should be kept confidential, and this is our practise, except when I am seeing a Herzl patient at the library, in which case I make a copy of the consult and place in the their chart at the clinic, this being considered an extension of my service there. In the case of the Herzl service, it is being delivered at point of care, and the expectations of privacy and confidentiality are different. I am recognized as being a member of the team who participates in the provision of care. Most people come to me having been referred by their physician or nurse in the first place which means that the question is already known to them.

I make a point of explaining to anyone who comes to me without a referral or meets with me in the library exactly how the system works i.e. that the consult will end up in their chart and why this is so. I also let them know that if this bothers them I will keep it confidential. So far no one has expressed concern over this or refused to have their consult put into the chart. Perhaps I should try to make the process more transparent by explaining it every time. I haven’t always done this for the same reason I know it is difficult for health professionals to remember to send their patients to the library or to my service: time can be an issue, and also it doesn’t always occur to me when I am focused on conducting a thorough reference interview and answering the question. You have given me something to think about.

Q: The second question/comment had to do with professional autonomy. Anon wondered whether it would be difficult for a librarian to maintain professional autonomy given the hierarchical nature of the clinical setting.

A: If I understand correctly, Anon is expressing concern that a librarian in my situation could be pressured to provide information to patients in support of whatever treatment decision was being recommended by the referring health care professional. It is not always easy for librarians, even for those of us working in a clinical setting, to uphold another of our professional codes which is to provide access to balanced and unbiased information to all, regardless of what our own opinions are on the question or the asker. We are human after all. And often we are limited by what information is actually available to us. Regardless, I do my very best to uphold this code. I am also very careful to make it clear that I cannot interpret the information I am providing access to, nor can I offer any kind of opinion regarding treatment.

There have been a a few cases where the information I have provided has suggested a different course to the patient than the one originally proposed by their referring physician. There have also been cases where the patient only agreed to the proposed treatment after receiving information from me. I see both as examples of shared decision-making and am pleased to have played a part in that process. My impression is that the health care providers I work with are aware that it could go either way when they send someone to me, and this is a risk they take because they believe in the process.

*Important note: the charts I am referring to are kept at the Herzl and are not available hospital-wide or electronically.

Testing boundaries: how much is too much? Challenge

Sometimes you're sitting with a patient or family member, conducting your reference interview so you can determine what their information needs are, perhaps trying to find a balance between what their health care provider suggested they be given (say, information about hormone replacement therapy), and what they themselves are truly or additionally interested in learning about (say, returning to a normal sex life after surgery), and it becomes clear that what's really important here is not the information but the time spent talking to someone, being heard.

There are times when I find myself talking with someone for far longer than it took to meet their information needs. One person will want to tell me about his children, how they're doing at school, how he met his wife, another might go into more detail than necessary about a previous surgery, about a seemingly unrelated health issue, or about her love of gardening. On the surface it all seems unrelated, but if you put yourself in their shoes for a moment, then it's clear that everything is intimately related because it's their life we're talking about, not just their illness, and the one cannot be separated from the other.

So I listen, and I listen for clues to what might be hidden information needs. Sometimes what seems on the surface like chit chat is secretly or unconsciously a question. My job is not only to help people find information but to show them what kind of information is available, and even to help them figure out what it is they really want to know, because this is not always clearly formulated from the get go.

On rare occasions it feels like I'm having hundreds of questions fired at me all at once, and I can't be sure which to take seriously. When this happens I try to bring things back to the matter at hand and keep things focused. I have to wonder though, where exactly to draw the line. Is an hour too long if all of it is spent researching the question? Is it too long if 30% of it is spent researching the question? How many questions can reasonably fit into one session? And how much do I want to know? What is it appropriate for me to know? Is okay for this to be dependent on my own personal and professional sensibilities balanced with the desires of the person I'm helping?

Other times I get asked difficult questions, like "what would you do?", or "what should I do?" In these cases I must be extremely careful to not give any answer other than, "I am not a health professional. I cannot give you advice about what to do or how to interpret this information. Your doctor or nurse will be happy to go over this with you." Sometimes I have to say this over and over.

It's tough. I want to help people and feel that they're satisfied with my help, but in these cases everyone involved is left with a feeling of dissatisfaction. I know that their doctor or nurse will not always be able to go over it with them in the kind of depth they want or need, not because they don't wish to but because there isn't the time. I also know that consultations with doctors and nurses are often stressful and all the hundreds of questions can fly straight out of a person's head when it comes time to ask, even if they've been organized and proactive and have brought a list with them. But I still cannot give any other answer. It helps that I genuinely don't know it.

Ethics resolved: challenge

It's been a couple of weeks, during which time I had a much needed vacation, and was able to resolve the ethics dilemma I mentioned in my last post. I am relieved to report that I will be able to continue posting cases. It's really quite simple: the cases need to be unrecognizable to the people involved and not just to everyone else. So what is required is a bit of fictionalization. The idea is to keep the important details that make each case interesting and potentially useful to my readers, and to fib on the ones that are unnecessary but unique enough to allow someone to recognize themselves. I have added a bit about this under Author's note:

Important: While based on real consultations, the cases posted in this blog have been mashed up, fictionalized, posted out of sequence, and otherwise tinkered with in order to maintain the privacy and comfort of the parties involved.

With this in mind, over the next few weeks I will be editing and reposting the cases from before, and adding new ones as I go. This makes me think about a recent interesting post of David Rothman's in which he discusses the problem of versioning in blog posts. It occurs to me that if I chose not to be transparent about this process, there would be no way (that I know of) for anyone to know for sure that anything had changed. I have chosen transparency for the same reason I decided to create this blog in the first place, which is to share the challenges I encounter in the course of implementing this new service with others, and, selfishly, to allow myself a space in which explore my experiences and thoughts. But I also feel that in these cases it's a good thing that the new version overwrites the old.

Thank you for your patience!

Staff requests: 2 cases and Ethics: challenge

It has recently been brought to my attention that there may be ethical problems with posting cases the way I have been, even though I have been very careful to remove any personally identifying information. Hopefully I will be able to continue once I have spoken to the ethics consultant at the hospital in order to confirm that all is indeed okay.

In the meantime I have taken the cases offline (hopefully temporarily), and today I will write about a couple of requests I've gotten from staff.

Case#1

Scenario

One of the health professionals (HP) at the clinic asks me to find some information regarding which vaccines that do not contain thimerosal (a mercury-based preservative used in multi-dose vials to prevent contamination) are available in Canada, as one of his patients has expressed concerns over the additive. He gives me a list of possible vaccines.

Resolution

I run several searches in Google which verify the correct spelling and allow me to narrow my results to those pertinent to Canada. Unfortunately, as I write this, I do not remember my exact searches, except that I did not include the vaccines from the list in my searches. I do remember running several relatively convoluted ones before I was able to find the information I was looking for. I have tried to reproduce my search for the purposes of this post and for some reason I am only able to find an older 1 March 2003 version of the 2007 document I am ultimately able to find for the HP:

Canada Communicable Disease Report
Volume 33 • ACS-6
1 July 2007 An Advisory Committee Statement (ACS) National Advisory Committee on Immunization (NACI)
Thimerosal: Updated Statement

Discussion

I find the older version by typing in thimerosal canada which is a search I know I would have run the last time, so I am doubly confused at to why I did not find the older version last time but have now found it so easily. Having found it there would have been no reason to keep looking as there is no indication that there is a more recent version available. This is yet another example of why searching for information using Google can be hit and miss. I have tried to reproduce searches before and have had similar problems, something I demonstrate in the Google course I developed for the Health Sciences Library: Google-eyed? Don't despair! How often do we take screen captures of our search results? It is way too easy for us to doubt ourselves and not the tool we have become so dependent on.

Total time: 30 mins

Case#2

Scenario

One of the GPs at the clinic asks me where he can find decision aids to use with his patients and their families.

Resolution

I happen to have a very useful site already bookmarked in MyHq so I show it to him: Ottawa health research Institute A-Z Inventory of Patient decision aids.

I also show him a really neat one I have found recently during an encounter with a family member in the Gynecologic Oncology department: Ovarian Cancer Treatment Guidelines for Patients– Version III, April 2007. The reason I like this one so much is that is not just a list you can print out and tick off, but rather a fully interactive tool that works something like a choose you own adventure.

Total time: 5 mins