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.

Genetic counseling, uninsured population & birth order: 3 cases from the Patient and Family Resource Centre (PFRC)

Case #1

Scenario

A pregnant woman in her late twenties comes into the library. To my untrained eye she looks like she is in her 3rd trimester. She speaks halting French and asks if we have any information on genetic counselling. I conduct a reference interview, asking a few questions in order to narrow down her information needs. She wishes to know whether there is someone she can speak to confidentially at the hospital about the results of a DNA test done recently on her baby.

Resolution

I phone one of the GPs I provide research assistance to at the Herzl. He suggests that I contact the hospital's genetic counsellor, which I do. I am advised to inform the patient that she will be able to speak with the genetic counsellor but that she will need a referral from her GP in order to do so. I relay this infomration to the woman.

Total time: 20 mins

Case #2

Scenario

A woman phones and asks for information about admission and regarding the costs of delivery at the hospital (both vaginal and C-section). The woman's sister is 8 months pregnant, has recently immigrated and does not have Quebec insurance.

Resolution

I contact one of the nurses in Maternal-child health who I have recently assisted with the creation of patient handouts. She advises that the woman contact JGH Admissions for this information. She suspects that the sister is without status and likely has not yet seen a GP in this country, and gives me several names of GPs who are accustomed to accepting uninsured patients. I call the woman back with contact information for JGH Admissions. I also provide the names and tel. nos. of the aforementioned GPs and tell her she can contact them if her sister needs to see a GP before her due date, regardless of insurance status.

Total time: 40 mins

Discussion

Had the woman contacted JGH Admission directly it is unlikely that they would have detected her sister's underlying and more important need to see a GP.

Case #3

Scenario*

A older female Herzl patient contacts me at the library. Her husband has recently passed away and her three children, who are in their late teens and early twenties, have been arguing over their inheritances. She would like to read 1 or 2 journal articles on the subject of social dominance and sibling rivalry. She believes that reading about these dynamics might help her to cope with her situation.

Resolution*

I contact my colleague at the Institute of Community and Family Psychiatry (ICFP) Library as our collection does not include psychiatry or psychology and this is not my area of expertise. She suggests I do a search in PsychInfo, and provides a couple of key words I might find useful. (PsychInfo does not index using the MeSH vocabulary). I do a quick search in the database and find several articles that may be of interest.

I get back to the woman and conduct a more extensive reference interview, wanting to confirm that I have correctly understood her information needs. She speaks to me at length about her family history and this present situation. She tells me that she wants something that will be simple to read, and I suggest that perhaps she should consider going to Chapters or Amazon instead. She then admits that several weeks ago she found some very interesting articles in our library's Journal of Psychosocial Nursing at which point I am confident that she will be able to read the articles I have found.

Total time: 1 hour

Discussion

This is an example of an information need that requires access to a library and the assistance of a librarian in order to be filled.