Info.Rx Cases

Unreliable-reliable information: case

2009-10-08T12:53:00.006-04:00

The other day I was in the teaching room and I was putting out some of the new brochures I ordered on the topic of contraception. We have a little display in there so the residents can grab something quickly when I'm not at the clinic.

Information about choosing a contraceptive method is one of the most commonly requested handouts and we keep running out. I found what I thought was a really good one produced by the Society of Obstetricians and Gynecologists of Canada (SOGC). You can't get more reliable and authoritative than that, I figured. I still think that... but....

One of the supervisors opened one up- they look like little brochures but actually they are little posters folded up nicely. When you unfold them you get a comparison chart at the top that shows the number of unintended pregnancies for all the different methods, from Intrauterine system (IUS), through Oral contraception, Condoms, Diaphragm etc., all the way to No contraception (no surprise, pretty high failure rate here: 850 out of 1000, or 85%).

It struck the doctor as odd that Intrauterine device (IUD) had such a high failure rate compared to the others (9 out of 1000 with perfect use vs 3 out of 1000 for the pill for example). It did seem a bit odd. Also for typical use there was a little "-" instead of a number, implying what I'm not sure. No data? Zero failure rate? An asterisk next to the 9 brings you to a little footnote: "This perfect use failure rate corresponds to the Nova-T 200. The typical use failure rate for the Nova-T 200 is likely slightly superior." So then shouldn't there be a number there instead of "-", maybe a higher number than 9?

I decided to check out the references listed right below the chart: Trussell 2007, Trussell 2004, Black 2004* and Andersson 1994.

The paper that seems to have provided the data for the chart is Trussell 2007, or complete reference:

Reducing unintended pregnancy in the United States
Contraception, Volume 77, Issue 1, Page 1
J. Trussell, L. Wynn doi:10.1016/j.contraception.2007.09.001

I am still a bit confused. The paper has a table that shows numbers that correspond exactly to all the other data in the chart except for under IUD we have:

Contraceptive method Typical use Perfect use

IUD
ParaGard (copper T)	0.8	0.6
Mirena (LNG-IUS)	0.2	0.2

So where is the Nova-T 200? And how come the above numbers aren't used? I did not find Nova-T 200 data in the other papers either. Provided I found the right ones.**

I still think the handout is great. It provides much more than just data. Aside from the chart there is information about all the contraceptive methods, what they are, how they work, advantages, disadvantages, stuff that will certainly help people make informed choices. And if they have any questions they can discuss with their GP.

However it is interesting to see that even information provided by the most authoritative sources can be flawed. Considering all the shocking debacles we have seen recently, Elsevier's fake journals, authors ghostwriting for pharmas, this is just one more reason to start assessing the contents of individual resources, and not rely so much on authorship.

* These are the Canadian contraception guidelines: http://www.ncbi.nlm.nih.gov/pubmed/15115624

** Once again, is it too much to ask that people provide the full reference? Some authors are prolific. It took me a while to figure out which Trussell 2007, and which Trussell 2004 etc. Still not sure about all of them. It shouldn't be so hard.

Picky eaters: case

2009-07-30T15:53:00.003-04:00

It's time to revisit picky eaters.

Scenario

A mother comes to see me in my office carrying her 12 month old son who, she tells me, refuses to eat meat. Luckily he will eat just about anything else. She does not want to force him to eat meat, but no one else in the family is vegetarian so she is not sure how to make sure he's getting enough of the vitamins and minerals he needs.

Resolution

I am able to find quite a few good resources that provide information about vegetarian diets for children:

KidsHealth: Vegetarianism
KidsHealth: Snacks for Toddlers
KidsHealth: Toddlers at the table- avoiding power struggles

Vegetarian Society: Infant diet

Caring for Kids: Feeding your vegetarian child

NOAH: Vegetarian diets (for babies)

Challenge: Knowledge translation

2009-07-09T14:18:00.014-04:00

Since the CHLA conference I've been thinking a lot about knowledge translation (KT) and what it means to me and for me i.e. how I understand the concept and how I can put it into practise.

KT came up a lot in the presentations at the conference and on the Tue before I left an entire panel was devoted to discussing it. Three panelists, Orvie Dingwall, MLIS Librarian and Project Manager CPSI-ICSP ( Presentation, Handout), Sara Kreindler, DPhil Winnipeg Regional Health Authority - Research & Evaluation Unit, and Elizabeth Hydesmith, MSc Senior Project Manager NCCID, discussed KT in their organizations (can I take a moment to say kudos to CHLA for making almost all papers and posters immediately available on their website? It would be great if MLA did the same*). While the panel was very interesting it left me wondering what KT means in a hospital library or consumer health resource setting. Dr. Thomas Kerr also mentioned KT in his presentation, Bridging the Gap between Evidence, Policy and Public Opinion: Lessons from the Scientific Evaluation of Vancouver's Supervised Injection Site, and it was he who gave me an idea. More in this later...

It hasn't been easy to find a "plain language" explanation of what KT actually is (CIHR, IDRC) (WHO's isn't bad) which is kind of ironic. I'm not ashamed to admit that KT is term that I was not familiar with before the conference. In my last semester at library school, which I completed at McGill, I was briefly introduced to another "K" term, Knowledge Management or KM, but not to KT. Neither came up in my studies at Dalhousie. I won't try to speculate as to why and don't feel that I was cheated out of anything since I was given the tools to understand the concepts. I think catchphrases and buzzwords are useful, up to a point. Even scholars of KT aknowledge there is some confusion about KT and related terms such as knowledge transfer, knowledge exchange etc. (Lost in translation: Time for a map?, IDRC). I honestly couldn't have stood the discussion that would have ensued, considering how much time we spent on the data vs information vs knowledge debate (only slightly less annoying than the art vs craft debate I suffered through at NSCAD).

The important thing is to own a concept, to understand it on a deep enough level that it becomes part of how you behave and your decision-making process, regardless of what word(s) you use to describe it. This is the very process KT is concerned with and jargon can interfere, as acknowledged by the existance of KT opportunity 3, identified by CIHR, which urges the use of "plain language."

Now we are getting to the "in" that I was looking for. Consumer health information is all about "plain language" and bridging what WHO calls the "know-do" gap. So providing patients and families with easy-to-read health information falls within the KT realm. But there has to be more to it than that since I work with health professionals as well as consumers. KT opportunities 4 and 5 allow me to take things a bit further.

This is in fact a solution to a problem I've been mulling over for some time. Since I have been working in the teaching rooms at the Herzl, and I don't have precedent for my service (except one, now defunct), I wanted to have some way, other than just saying so, to show the residents and their supervisors that what I do is evidence-based and not just an idea I came up with and was able to convince a few doctors was a good idea.

It was clear to me that I could not expect anyone to read the needs assessment proposal I wrote several years ago which included an extensive lit review of such concepts as health literacy, shared-decision-making, the doctor patient diad, patient empowerment etc, and how the participation of a librarian and the provision of consumer health information can positively impact all of the above. Nor could I expect them to study the detailed report on the results of that needs assessment.

I needed a much simpler and quicker way. Dr. Kerr mentioned having used "plain language summaries of SIF research" called Insight into Insite. It occurred to me that I could do something similar, one page evidence-summaries on a few relevant topics. Obviously I am not communicating the findings of my own research, but there is research to support what I do, research that can serve to encourage use of my service. Behold the first one of what I hope to be a series: Health information in multiple languages at Herzl. Where do "multidirectional communications and ongoing collaborations among relevant parties, interdisciplinary process etc" come in you might ask? Well, I am using research generated by both librarians and health professionals, and before sending my little summary out I showed it to one of the physicians I work with the most, who suggested an article I might add to it.

At some point I would like to expand to the rest of the hospital, and put out evidence summaries under the library umbrella as well.

*A few hours after writing this post I received my MLA Focus which announced that "full video/audio with synchronized slides of MLA plenary sessions"are now available to members only via the website.

Wolfram Alpha: "computational knowledge engine"

2009-05-21T14:15:00.009-04:00

Wolfram|Alpha has been in the news/blogosphere lately.

Search Principle Blog
Mr.W's lecture at Berkman Center, Harvard
The NYT
The Register's not-so-glowing review
(for more see 1^st item in this list)

I've spent a bit of time fiddling with it to see what it can do and whether it might be useful for either myself, health consumers or the health professionals I work with.

So far I have found one potential use which is to look up disease mortality rates. If you type in lung cancer for example, you will get Canadian & world mortality figures (number of deaths & rate of death, per year). If you type lung cancer Italy, you get the results for that country & the world.

More interesting is the list¹ of background sources and references that pops up when you click on source information for the original query. In this case:

World Health Organization. "Data and Statistics" 2009.
Centers for Disease Control and Prevention. "National health Center for disease Statistics." 2009.
Centers for Disease Control and Prevention. "NCHS--Mortality Data from the National Vital Statistics System." 2008.
The Disaster Center. The Disaster Center. 2009.
[Poodwaddle.com.] World Clock. 2009 This one is mesmerizing and creepy. I'm not sure that Poodwaddle is an entirely credible source (possibly why Wolfram|Alpha leaves that bit of info out), but whoever they are the data apparently comes from "World Health Oragnization, CIA Factbook, US Census Bureau and other sources."
Centers for Disease Control and Prevention. "NCHS--Data Warehouse." 2008.

I guess potentially this is a very quick way to find sources that offer statistics for a particular disease, though you still have to search the resources to find the specific data. Unfortunately Canadian resources are not included. Also not sure which diseases are in there. Only one way to find out...

...even more interesting:

Type in heart attack and you get a risk calculator (based on Framingham) that lets you input age, gender, cholesterol levels, blood pressure, and risk factors, and which then computes the likelihood that the person whose data is inputted will die from a heart attack in the next ten years.² You are also shown the impact of cholesterol and blood pressure on risk.

I look forward to testing it out further over time. My biggest concern is how reliable and authoritative the information we are getting is. So far my confidence has not been inspired,¹ and I'm not ready to recommend it except as something with potential that's fun to play with. Try asking it how old it is.

Cheers,
FF

¹ Here's what W|A has to say about the list:

This list is intended as a guide to sources of further information. The inclusion of an item in this list does not necessarily mean that its content was used as the basis for any specific Wolfram|Alpha result.

Hmm. Interesting way to cite your sources. Not sure this would wash in a term paper. I have a feeling the issue will come up again (it was also mentioned in the question period of Mr.W's lecture at Berkman Center, Harvard.)

² same result if you input myocardial infarction. No link is suggested between the two terms by W|A.

Meta post: challenge

2009-05-14T14:27:00.012-04:00

"What is the brand of this blog?" This is a topic that a former classmate of mine wrote about not too long ago. Now that I reread his post, and more specifically my response to it, I realize that this has been an issue for a while and here I am still thinking about it. Maybe I should take my own advice.¹

One of the blogs I read on a regular basis² is Caveat lector. I think one of the reasons I read it is precisely because Dorothea Salo will write about anything she feels like, most unapologetically. Sometimes that's music, and sometimes it's weekend hikes or loons, though mostly it's to do with librarian/web geekery. Much of it goes over my head to be honest (see footnote no. 2), but that's okay. I don't have to read every post. I also really like Learn to live which is sporadically peppered with posts about non-consumer health related things such as sushi and birds.

So I guess what I'm doing is giving you fair warning that I will henceforth be addressing topics other than consumer health and/or my service. That I will, gasp!, at times be writing about something entirely unrelated to librarianship.

For instance, have I mentioned how proud I am of my non-Luddite grandmother? Over the past 40 years she has slowly transformed a garbage dump into a public garden.³ My sister made a documentary film about it called Pupa's garden which some of you may have the chance to watch someday. It's also a film about my aunt who had MS and how my grandmother found solace in helping green things grow while her daughter's health slowly and drastically failed. There has never been a more poignant illustration of the dicotomy between life and death. And such beauty!

1 Is there a librarian equivalent for physician heal thyself?
2 I don't publish my blogroll here partly because I haven't gotten around to figuring out how- I am still and happily, despite everything, a bit of a vestigial Luddite.
3 How many grandmother's have websites?

Dealing with emotions: challenge

2009-04-16T15:30:00.011-04:00

Today I want to gather my thoughts on what happens sometimes when I am faced with trying to help a patient who is suffering emotionally and so the consult ends up being about more than just finding information. When this happens, not too often thankfully, I am sometimes left with the feeling that I could and even should have done something differently, but at a loss as to how.

Health care professionals are formally taught how to communicate and establish trusting, humanistic relationships with their patients (though of course not all will excel at this).^{1 2 3 4} For obvious reasons, librarians/info professionals do not get such training. We are taught how to conduct a reference interview, sure, but not exactly what to do if a patient is referred to you and then angrily questions what you can do for them. They look from you to the computer and flat out state (with maximum scorn) that they could do what you are about to do for themselves and with the same results. They are not a "problem patron." You know they are suffering from anxiety, or depression, or have just been diagnosed with colon cancer and that their emotions are understandably running high, but you have no script, no checklist to smooth the interaction. Do you sympathize? Do you try to lighten the situation? Do you engage or remain impassive and try to conduct business as usual?

In situations like these my instinct is to throw the idea of finding information out the window in favour of just listening. I know a little bit about active listening (from life as well as from library school) so I try to paraphrase what is being said to me, while repeating as many times as possible that I understand their frustration, that I *might* be able to find something they have missed in the course of their own searches on Google (or at least validate that their search was well done), and that I will be available when they are ready if today is not good.

But this just an instinct. And once in a while I get flustered. Then I forget the above and I try to forge ahead, to prove myself by finding something useful, sometimes unsuccessfully (because of aforementioned flustered-ness). This of course undermines the trust that I am hoping so much to establish, and leaves me feeling inadequate and inadequately prepared.

Either way I have no real formal training to deal with such situations, and no way to establish whether my instincts are correct except based on how the situation resolves itself (i.e. are they still angry when they leave? Did they come away with something useful?). My thinking is that some of the literature developed for health professionals might be of service (just the reading from today was helpful). I wonder if any other information professionals working in my area of speciality have faced this kind of problem and how they have sought to resolve it. Your thoughts are welcome.

1 Branch WT, Kern D, Haidet PWeissmann P et al. The Patient-Physician Relationship. JAMA 2001;286(9):1067-1074. Accessed April 16 from: http://jama.ama-assn.org/cgi/content/abstract/286/9/1067
2 Gask L, Usherwood T. ABC of psychological medicine: The consultation [clinical review]. BMJ 2002;324:1567-1569. Accessed April 16 from: www.bmj.com/cgi/content/full/324/7353/1567
3 Bedell SE, Graboys TB, Bedell E, Lown B.. Words That Harm, Words That Heal [commentary]. Arch Intern Med. 2004;164(13):1365-1368. . Accessed April 16 from: http://archinte.ama-assn.org/cgi/content/full/164/13/1365
4 Hastings A. The Good Consultation Guide for Nurses. s.l.*:Radcliffe Publishing;2006.

*As a total aside- how come both Google Books and Amazon do not include location in their records? Very frustrating. I do not have the patience to check more than 3 sources today (also checked McGill's catalogue to see if they had a copy but no luck). Hopefully my readers will forgive my laziness:-b

Update

2009-04-02T16:34:00.005-04:00

Jeez! Has it really been more than a month since I've posted? (I must apologize to Lori who commented on my last post way back in Feb. but the comment got held up for moderation and I never got an email notifying me- I have now changed back to unmoderated commenting). I guess the reason for my lacklustre attendance on my own blog is that I have been very busy running the service, which is a good thing right? Right!

Since my last confession I have had my contract here renewed (mostly officially) for another three years. I am very excited to be able to stop trying to prove the service is worthwhile and begin providing it full time. Well, full seven hours anyway.

I have my time divided on a weekly basis now, between the teaching room and my "office", so that means I've got three point five hours to do everything administrative, and still provide support for anyone who walks in the door which happens more and more these days, and maintain the pamphlet collection which gets used quite a lot judging by the "missing teeth" I find every Thursday afternoon, and maintain the website which got over 1500 visitors since January. I am not in any way complaining! I love feeling needed.

Tuesday afternoons in the teaching room are great. I get to meet whichever resident is working that day (usually somewhere between three and six) and continue to form new working relationships with them. It's very useful for me to be behind the scenes.

Being there means being able to find teachable moments (rather than just provide information) although this is a skill which I will need to improve. On-the-fly teaching is different than presenting prepared subject matter. I also need to get over feeling weird about teaching doctors. It's one thing to show a surgeon how to use EndNote properly, quite another to step in and say to a GP, here's how you could be doing your job better in this particular area.

It also , and I'm sure I've said this before, allows me to get a much better sense of how the team actually works and what patients really need. It is as important for me to identify information needs of patients and make sure they are being met as it is for me to acknowledge those cases where information is not called for. I now have a real appreciation for how difficult it sometimes is for a GP to figure out what the patient is even there for (similar to conducting a reference interview when your patron doesn't know what their own question is). And we all do it don't we? We all find ourselves in bookstores and libraries and doctor's offices not really knowing what to ask or why we're there. By listening in I can sometimes identify certain needs that are not being recognised by either the GP or the patient.

So that's my little update. I will try to post a case soon...

Health in the news: Cont...

2009-02-23T14:45:00.018-05:00

Myself and the chief librarian will be participating in our hospital's Mini Med this year along with Dr. Eddy Lang. Dr. Lang teaches Evidence-based medicine to McGill medical students, is associate editor of several medical journals and co-authors a health column for the Montreal Gazette. His contributions to journalism are in fact the topic of this post.

HealthWatch runs every other week as a regular Gazette feature where medical journalist Evra Taylor Levy and emergency physician Eddy Lang help make sense of sometimes contradictory medical research.

What is so special about the column is that it does everything I was criticizing journalists for NOT doing the last time I wrote, and even takes it a step further by breaking it all down into clearly marked sections that help readers make sense of the research. Specific sections vary by column but here are a few to give you a sense:

The study: provides the full reference.
What was already known about...: gives a brief overview of the topic.
What was this study about and how was it done?: sometimes this one is broken down into two sections:
What kind of study was this?: explains the study- for example if it was a randomized-controlled trial you get an explanation of what that means. And:
How was this study conducted?: explains the methodology in plain English.
What makes this study unique?: is self-explanatory.
What were the key findings?: see above.
So, what's the bottom line?: what does this mean for the readers? What should they do now that they are aware of this study?
Online resources: provides links to just that, online consumer health resources on the topic at hand.

Can you see why I'm excited? Take a look at this column about diets and see how much easier it is to understand the research. The only thing missing is a link to a full text copy of the study itself.

I swear I only met him after I wrote my last post!

Health in the news: Discussion

2009-01-29T10:28:00.024-05:00

Recently David Rothman published a post in which he talked about "sites that critique journalism." These sites exist in order "to fill the information gap which can arise from:

confusion caused by media reports on the publication of new scientific studies relating to the same medical area, but with contradictory conclusions;
inaccuracies in some media reporting caused by - difficulties in communicating complex medical information to a non-medical audience; over-zealous sub-editing to make news items/articles 'fit to size' and the issuing of press releases, by medical journals, which may not always report limitations in newly published studies - leading to further miscommunication of information;
a reluctance from some doctors to speak to the media, due to perceptions within the medical profession that doctors may be misrepresented or misunderstood;
public perceptions that 'official' medical or scientific advice may be influenced by policy matters; and
difficulties in knowing where to obtain independent quality-assured medical information. (Behind the medical headlines: about, retrieved 29 Jan. 2009)

I've being thinking about this a lot lately and have been meaning to write about it. My particular peeve has to do with the fact that news articles rarely, if ever, cite their sources. Articles in the news will at most mention in passing that such and such study was published in the October issue of the New England Journal of Medicine. The researcher's names are usually mentioned.

That is enough information for me to find the article, but is it enough for the lay person? Since a big part of my job is teaching health professionals how to find articles they sometimes have difficulty finding when they have the complete citation and access to McGill's full complement of journals and databases, I suspect that it is not enough for your average person reading the paper.

It took me half an hour of skilled digging to find the research discussed in this article a friend recently posted to Facebook: Surrounded by friends? It's all in your genes. Eventually "...I was able to find out that it was published in the Proceedings of the National Academy of Sciences in the Early edition ("published online before print January 26, 2009") which is available by subscription only- the copy I have linked to here is not the final published draft."*

Interestingly the proper citing of sources does not seem to be considered of much importance by the sites mentioned by David, or the site I usually recommend (Behind the medical headlines). Health News Review.org states that

An Unsatisfactory story may:
• Fail to identify the source of the story (news release, journal article, editorial, scientific meeting presentation, etc.) and fail to make obvious the extent to which that source is likely to be conflicted... (Health News Review: About us, retrieved 29 Jan. 2009)

Media Doctor.ca states that "No mention of sources or possible conflicts of interest" (MediaDoctor: Rating information, retrieved 29 Jan. 2009) is unacceptable in all relevant categories (Diagnostic Test, Harm Stories, Other, Pharmaceutical, Surgical Procedure). However, mentioning or identifying information sources is not the same as providing enough information about the sources that they can be easily accessed.

How difficult is it to include the journal issue and volume? Since more and more medical research is becoming freely available thanks to open access initiatives, why not go so far as to include a link to the full text? And if it is as yet unpublished shouldn't that be mentioned too?

I am continually emphasizing to patients and their families the importance of evaluating consumer health information resources, and one of the most important criteria is precisely: does the resource cite its sources? The HonCode lists this as number four out of eight principles that need to be followed in order to be certified. The National Cancer institute lists it fifth on its list of criteri a, and the American Medical Library Association lists it third.

When will news media be held to the same principles?

*Speaking of citing your sources, to be honest I'm not sure how to cite something that I wrote in a Facebook post. If anyone can tell me I'd be glad to know. In any case my comment was posted on at 8:14am January 28.

Topic: Parenting resources

2009-01-12T15:42:00.012-05:00

Today I thought I would focus on parenting resources as this is a question that has come up a few times lately and there are quite a few good ones to recommend. Even the best parents have doubts and they certainly have questions! I have chosen to focus on Canadian resources as these are the ones I recommend to my families.

Ca ri ng for Kids (Eng/FR)

In their own words:

Caring for Kids is designed to provide parents with information about their child's health and well-being. Because the site is developed by the Canadian Paediatric Society—the voice of Canada 's 2,000+ paediatricians—you can be sure the information is reliable.

Most documents on Caring for Kids are based on CPS position statements, which are created by our expert committees and approved by our Board of Directors. Position statements are reviewed each year to ensure they are up-to-date.

Best Start (Eng/FR)

In their own words:

Best Start: Ontario's Maternal Newborn and Early Child Development Resource Centre supports service providers across the province of Ontario working on health promotion initiatives to enhance the health of expectant and new parents, newborns and young children.

Growing Healthy Kids: A guide for positive child development (Eng/FR)

In their own words:

Growing Healthy Canadians: A Guide for Positive Child Development, was created to promote and illustrate a simple idea: that the healthy development of children and youth is a shared responsibility. There has been much debate about who should be doing what in order to grow healthy children. The truth is, everyone has important contributions to make in ensuring that young people grow up in the kinds of conditions they require to thrive. At the same time, no one type of contributor – not families, communities, workplaces, nor governments – can successfully raise the next generation on their own.

Invest In Kids (Eng/FR)

In their own words:

Invest in Kids is [a national charity] dedicated to helping parents become the parents they want and need to be. By translating the science of parenting and child development into engaging, easy-to-understand, relevant resources for parents and professionals, Invest in Kids aims to strengthen the parenting knowledge, skills and confidence of all those who touch the lives of our youngest children to ensure the healthy social, emotional and intellectual development of children from birth to age five.

For information about the history, people and research of Invest in Kids visit the about us section of their website. You can also visit Parent Help Line for links to useful resources.

Canadian Association of Paedeatric Health Centres (CAPHC)

In their own words:

CAPHC was established in 2001 through a transformative process of organizational renewal of the Canadian Association of Paediatric Hospitals. This watershed activity was undertaken to respond to member needs arising from emerging healthcare challenges and the shifting landscape of child and youth health service delivery in Canada - child healthcare organizations were undergoing fundamental structural changes.

Today CAPHC is a forty-two member organization representing multidisciplinary health professionals that provide health services for children, youth and their families within: quaternary and tertiary health centres; community health centres; rehabilitation centres; and home care provider agencies nationwide.

All children’s hospitals and their respective Children’s Hospital Foundations in Canada are members of CAPHC, thereby providing linkages to clinical care, education and research. A complete list of CAPHC member organizations can be found here.

Montreal Families (Strangely this resource is only available in English, however many of the resources listed are French)

In their own words:

Montreal Families is locally owned and operated. Our mission is to provide local information and professional advice to enhance all aspects of parenting and family life.

Montreal families also publishes a free monthly newspaper, a biannual resource directory, and organize camp and education fairs. There isn't a whole lot of information about them on their website but the fairs are listed on the Government of Canada website so they seem to be considered a reliable source of information. Certainly the local information they provide is useful.

Punjabi diabetes information: case

2008-12-04T10:15:00.012-05:00

Recent events in Mumbai, India, have left me feeling saddened by the tragedy and homesick for the place. I am Italian, but I spent many years of my childhood in India. We stayed many times at the Taj Mahal hotel, and at the Oberoi, brief moments of luxury before we made our way to where we were really going to stay, often in places where we ran around barefoot, got water in clay pots from a nearby well, milk and yogurt from the cow farm next door, and read our bedtime stories by the light of candles. Today I post a case from India.

Scenario

A family comes into my room (father, mother and two young boys) and tell me they have just visited their doctor who recommended that they come see me. The father has diabetes and is having trouble understanding everything the doctor says because his first language isn't English. I can tell from their accent that they are probably from India or Pakistan. When I ask what language they feel more comfortable with they tell me it is Punjabi. They tell me they are from Chandigarh, which is the capital of the part of Punjab that remained part of India.

The Open Hand Monument in Chandigarh

They are pleased and surprised when I tell them I visited Chandigarh even though I unfortunately don't remember it because I was too young.

We chat a bit more and then I let them know that I may be able to find some information for them in Punjabi which pleases them very much.

Resolution

I have a feeling that resources from the UK will be most likely to have information in Punjabi.* Sure enough Diabetes UK has information on several topics related to diabetes: What is diabetes?; Managing diabetes; Healthy lifestyle; Diabetic complications; Your eyes and diabetes etc.

The UK Department of Health also has some information in Punjabi** about diabetes: Living with diabetes: your future and wellbeing.

I prefer to offer at least some Canadian content, and because the family is computer literate, I also give them a link to a video from Fraser Health, BC: Living well with diabetes, and a booklet: On the road to diabetes health. I tell them that if any of the information from the Canadian resources is different from the UK information, they should follow the Canadian recommendations, and if they are not sure they should ask their doctor to clarify.

We say goodbye and are both a little more cheerful for having met.

* They also have information in Arabic, Bengali, Chinese, Gujarati, Hindi, Somali/Soomaali, Urdu and Welsh Cymraeg.

** They also have this leaflet in Bengali, Chinese, Gujarati and Urdu

Fundraising: challenge

2008-11-17T10:53:00.006-05:00

My agreement with Herzl was that they would pay for a 2-year pilot project after which, if all went well, we would seek external support. Those two years are up in April of 2009, so finally the time has arrived for me to do some serious fundraising.

The good news is that the service is thriving. I have a steady stream of referrals, as well as direct requests from patients and from health professionals. The web site is being well used with somewhere in the ball park of 400 visits per month.* I am now in charge of managing the clinic's pamphlet collection which is steadily growing (I'm starting to run out of room), and which I supplement with handouts I have been developing on various topics.**

And there has been an exciting new development. Last week one of the GP's suggested that we test out a way for me to further integrate my service. This suggestion was made after reading a preprint of a forthcoming PLoS paper, which the authors kindly agreed to share with me, and which I will provide a link to once it is published. The research shows that a "just-in-time" librarian information service had a positive impact on "time, decision-making, cost savings and satisfaction" in primary care.*** While this just-in-time service works quite differently from mine (clinical questions are sent to librarians using hand-held devices) it still provides compelling evidence of the positive impact a point-of-care information service can have on clinical practise.

In the case of our service, the idea is that I spend some time in the teaching room so that I can participate in cases as they occur and provide support and instruction to residents in "real time" so to speak. I spent a few hours in the teaching room last week and it was a great success all around. I learned a lot about what really goes on in consultations and was able to see ways in which I could be of service, the residents were able to benefit from my immediate support and in some cases were visibly relieved to have me there. And I have to admit, it was very cool to be able to really be a member of the team. If we can replicate this with some of the other teaching doctors, I would like to make it a regular component of the service.

All this to say that it would be lovely to be able to continue developing what is a unique and cutting edge service, one that has the potential to positively impact the quality of care being provided at the clinic.

I am new to the fundraising process, which I am hoping will not be a liability. So far, aside from continuing to develop the service and the website, I have been in touch with the hospital's foundation, and with public affairs who will be helping me to increase visibility of the service. I have also begun compiling a list of foundations and potential donors but I fear that I won't have the time to follow up on that.

If any of my readers has suggestions or knows anyone who might be interested in being a donor please don't hesitate to contact me.

* I am not a statistician so I don't have the exact figures. The content management software we use allows us to keep track of unique visits to each page, which if I add them up amount to over 400 visits, however I am sure that each visitor is going to more than one page. This is why I say visits and not visitors, though I'm sure that statistically I am not quite correct.

** These handouts consist of recommended online resources on various topics, such as Teen health, Pregnancy, Menopause etc. which one of the GP's at the clinic has requested. They are available on our website as well.

*** McGowan J, Hogg W, Campbell C, Rowan M. Just-in-time information improved decision-making in primary care: a randomized controlled trial. PLoS. Forthcoming 2009. [I will have to verify the correct publication date]

Topic: Medical videos

2008-11-03T16:12:00.015-05:00

Not too long ago David Rothman published a post on where to find embeddable medical videos. I thought I would expand on that list and provide a few more good resources that let you watch videos for free, no download and no subscription necessary (Some offer an optional free subscription that lets you access added features).

Centres for Disease Control: CDC TV

In their own words: CDC-TV is a new online video delivery resource available through CDC.gov. Web visitors can now view or download videos on a variety of health, safety and preparedness topics. Most videos are short and all include closed-captioning (some videos are also open-captioned), so they are accessible to all interested viewers. The library of videos will expand to include single-topic presentations as well as different video series focused on children, parents, and public health professionals.

eMedTV

In their own words: We employ a multi-step process to create and review all information on eMedTV. Content is created by healthcare professionals on staff at Clinaero. These professionals use a variety of medical references to create this content, including medical reference textbooks, specialty medical journals, and drug-prescribing information approved by the FDA. This information is then reviewed by full-time professional editors for clarity. These writers and editors work closely with the Clinaero medical team, which includes on-staff physicians and pharmacists. We will often use specialists in various branches of medicine and research to review the content. Many of these specialists are considered key opinion leaders in their respective fields.

Insidermedicine

In their own words: The Insidermedicine Project is a physician-led news and knowledge-translation initiative that allows patients, doctors and medical students to keep up on the latest medical information by watching our unique videos that are created each and every weekday by our team of medical experts. Our goal is to reach patients, medical doctors and students around the world to ensure that each is receiving a daily "evidence based" health and medical update.

MD Kiosk

MD Kiosk can also be visited in Second Life on Virtual Health Island.

In their own words: The information provided by MD Kiosk is written and edited by board-certified physicians from a variety of different specialties. The aim of the MD Kiosk TOUCHSCREEN, WEB and other products is to improve the quality of patient health education by offering a multimedia alternative to traditional brochures or handouts that are (sometimes) given in the clinical setting. Physicians write and review transcripts of the videos.

Virtual Medical Centre

In their own words: Virtual Medical Centre is Australia's leading medical information website, which delivers the "latest medical information" written by medical professionals.
The Virtual Medical Centre website reaches medical patients their families and friends searching for medical treatment information and also medical specialists involved in the diagnosis, treatment, and support of patients with a disease, illness or medical condition.

MedlinePlus: Videos of Surgical Procedures

In their own words: This page provides links to prerecorded webcasts of surgical procedures. These are actual operations performed at medical centers in the United States since January 2004. The videos last an hour.

University of Maryland Medical Center On-line Videos

In their own words: The videos... include interviews with University of Maryland Medical Center and School of Medicine experts -- most of which initially aired on the TV show Maryland Health Today -- patient success stories, surgical Webcasts, overviews of our programs and services and much more.

Enjoy!

IBS: Challenge

2008-10-10T11:31:00.015-04:00

I get a lot of questions about irritable bowel syndrome (IBS), so I thought I would feature it today. It is another one of those conditions that gets you a list of questionable sites intermixed with authoritative ones.

As usual it is not always easy to tell one from the other, and some of the less trustworthy ones are often the most tempting because they make promises and sometimes seem to have more detailed information.

Trustworthy sites rarely, if ever, make promises, and can be very general which may be discouraging. But promises and information that are not evidence-based are unfortunately not worth much. Evidence Based Medicine provides a very good and easy to understand explanation of, you guessed it, evidence-based medicine and why it's so important.

Of course sometimes the reason there is no evidence is that the research hasn't been done, which can also be frustrating.

Another thing to keep in mind is that even trustworthy sites recommend treatments that haven't yet been approved by, say, Health Canada, but have by the FDA, the European Medicines Agency (EMEA), or whatever your country's equivalent of these bodies is (or vice versa), so it's important to be aware of what country the information is coming from.

If you are ever unsure whether you can trust a source of information, ask your health care provider, local librarian, or ask me and I'll be happy to help. The Oakland Public Library gives some good suggestions for how to judge online health information, and Behind the Medical Headlines provides expert commentary on what you're hearing about in the news.

Behind the Medical Headlines aims to provide the public and health professionals with authoritative and independent commentaries from leading medical experts on articles or news items which appear in our daily media (nationally and internationally) in an attempt to reduce the confusion which can often arise from conflicting, incomplete or misleading media reports of medical areas.

And don't forget to check for the HonCode symbol .

Finally, here are some of the evidence-based consumer resources I recommend for IBS:

Irritable bowel syndrome: tips on controlling your symptoms (American Academy of Family Physicians)
Irritable bowel syndrome (National Library of Medicine)
IBS diet: can yogurt ease symptoms? (Mayo Clinic)
Symptoms of IBS (International Foundation for Functional Gastrointestinal Disorders)
Irritable bowel syndrome (IBS) Health Center (WebMD)
Should I have tests for irritable bowel syndrome? (WebMD)
Irritable bowel syndrome: Controlling symptoms with diet (WebMD)

Omega 3 and ADHD: case

2008-09-25T12:39:00.003-04:00

Scenario

About 15 minutes before I leave for the day, a woman calls me and would like to know whether there is any evidence that Omega 3 is a good treatment for ADHD.

Resolution

Since I don't have much time I decide to use David Rothman's Consumer Health and Patient Information Search Engine. Here's what David says about his search engine:

This (recently re-created) Custom Search Engine searches authoritative and trusted consumer health information and patient education resources recommended by the U.S. National Library of Medicine and/or by CAPHIS (the Consumer and Patient Health Information Section of the Medical Library Association).

This is a great way to do a quick search of lots of trustworthy resources at once, and there is no need to weed through crappy results the way you would using Google. Thanks David!

I run a search for Omega 3 ADHD, and sure enough every single hit on the first page is relevant, authoritative and no one is selling anything (the same search in Google retrieves a first page listing a bunch of questionable blogs and websites selling alternative therapies).

I email the following links to my patron and still have time to shut down my computer and tidy my desk:

WebMD: ADHD Medications and treatments

WebMD: ADHD diets

WebMD: How effective is Omega 3 in treating ADHD?

Medscape: Fatty acid supplementation for ADHD

Mayo Clinic: Flaxseed and flaxseed oil

Converting blood glucose measurements US > CA: case

2008-09-04T11:10:00.006-04:00

Scenario

A young man tells me he would like to be able to convert US blood glucose levels (milligrams per deciliter: mg/DL) to Canadian (millimoles per liter: mmol/L).

Resolution

After much searching in various resources, and finally Google, I am able to find an online converter from Lifescan Inc., the people who make the OneTouch® System for monitoring blood glucose levels.

I would like to make it clear that I am in no way endorsing their products (I am not qualified to make any judgement about them), and usually I prefer to avoid information offered by such companies as it is likely biased, but in this case I decide to make an exception. The tool they provide is freely accessible and actually quite handy.

I would suggest that if you are looking for reliable information about diabetes there are other better resources. To list just a few:

Canadian Diabetes Association
recipes
Diabetes Quebec
Public Health Agency of Canada
Neuro-Patient Resource Centre
MedlinePlus - diabetes
UpToDate - diabetes

And now, without further ado, here is the link to the converter:

Blood glucose monitoring: converting measurements

Like other online converters, you can plug in the number you have and you will be given the number you want.

You can also use it to convert plasma results to whole blood results.

Support groups and community resources: online resources

2008-08-28T12:39:00.004-04:00

I recently discovered a new resource (new to me at least) that I thought I would share. I came across The Self-Help Sourcebook Online when I was doing some collection developement at the Patient and Family Resource Centre.*

The Self-Help Sourcebook Online is a searchable database that includes information on over 1,100+ national, international and demonstrational model self-help support groups, ideas for starting groups, and opportunities to link with others to develop needed new national or international groups.
This database uses information provided by the American Self-Help Clearinghouse, a department of the Behavioral Health Center of Saint Clare's Health Services in Denville, NJ, which published The Self-Help Sourcebook, 7th Edition in Fall, 2002.

Type in your keyword or select a "problem" from a drop down list, and you are provided with a list of support groups and community resources. It is very comprehensive, providing links to groups for everything from acne scars to albinism to selective mutism to cancer to workaholics to depression... well you get the idea.

One of the things I especially like about it is that it provides guidance for those people who would like to develop their own support group, in case there isn't one locally.

You can also browse a list of similar international clearinghouses. The Information and Referral Centre of Greater Montreal is particularly interesting to me of course. Check to see if your state/province or country is listed.

*I found the Sourcebook listed in the CAPHIS Consumer Health Bibliography for the Small Public Library.

Tetanus vaccine: case

2008-08-18T15:07:00.007-04:00

I haven't posted a case in while so I thought I would put my discussion of shared-decision-making and decision aids on hold, and spend the next couple of posts writing up cases instead.

Scenario

A man sends me an email. He would like some information about tetanus shots. He is scheduled for one the following week and would like to know what to expect in terms of normal reactions because a friend of his told him her arm swelled up a week after getting her shot.

Resolution

Judging from the man's email he has relatively high literacy and so I an able to give him information at a fairly complex level.

MedlinePlus - Medical encyclopedia entry on tetanus vaccines.

Immunization Action Coalition - vaccine information for the public and health professionals: Questions & answers about the tetanus vaccine.

The Immunization Action Coalition works to increase immunization rates and prevent disease by creating and distributing educational materials for health professionals and the public that enhance the delivery of safe and effective immunization services. The Coalition also facilitates communication about the safety, efficacy, and use of vaccines within the broad immunization community of patients, parents, health care organizations, and government health agencies.

UpToDate - Adult immunization (there is a nice section that covers possible side-effects from mild to severe, and a brief description of tetanus the disease).

Discussion

Immunization is THE top subject of interest to patients at the Herzl. Aside from a few questions I've received on the topic, my website statistics show that so far 832 people have visited the Vaccinations page 501 times since April (when the page was created). In second place is the page providing links to online Resources in French with 627 visits by 224 people (since January); and Heart disease and stroke in third place with 402 visits by 202 people (since March).

Shared-decision-making interventions

2008-08-08T13:14:00.003-04:00

Last time I posted I promised that I would talk more in depth about models that help health professionals implement shared-decision-making (SDM). The evidence suggests that such a model would be useful since health professionals find it difficult to implement SDM even when they feel it would positively impact patient outcomes.¹

I was hoping to find something like the PLISSIT model.* PLISSIT outlines the steps that a health professional can take to address the issue of sexuality with cancer patients, and one of the steps involves addressing their information needs:

P = permission (follow above link for explanation)

LI = limited information i.e. addressing the patient's information needs, conducting the reference interview, either providing information, discussing information that has already been found, or directing the patient to trustworthy information on the topic. Here's where a librarian or an information service might come in handy.

SS = Specific suggestion (follow above link for explanation)
IT = Intensive therapy (follow above link for explanation)

Unfortunately, besides LI, these steps are not particularly relevant to SDM, so the model is not transferable.

I have since had the chance to take a closer look at the literature and found exactly just such a model: The Ottawa Decision Support Framework (ODSF). Hurray! I love when I find exactly what I'm looking for. It also comes with a handy implementation toolkit, and evidence to support that it reduces decisional conflict between patients and physicians.²

Unfortunately the model does not provide a clear point at which information needs are addressed, making it more difficult to use it in conjunction with an information service. At the very least however, such a service could support the process by providing on-demand access to decision aids, which are known to

help patients participate in decision making, leading to informed choices that are consistent with their values.³

I also found a useful scale for measuring patient involvement,⁴which seems like an important step to take before attempting to facilitate or improve implementation of SDM.

*
As mentioned in my last post, I came across this model recently while researching the question of how to help HPs bring up sexuality issues with gynecologic cancer patients.

1 Gravel K, Légaré F, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals' perceptions. Implementation Science 2006; 1:16

2 Légaré F, O’Connor AM, Graham ID, Wells GA, Tremblay S. Impact of the Ottawa Decision Support Framework on the Agreement and the Difference between Patients’ and Physicians’ Decisional Conflict. Med Decis Making 2006; 26:373–390

3 O’Connor AM, Wennberg JE, Legare F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward The ‘Tipping Point’: Decision Aids And Informed Patient Choice. Health Affairs 2007;26(3): 716–725

4 G Elwyn, A Edwards, M Wensing, K Hood, C Atwell, R Grol. Shared decision making: developing the OPTION scale for measuring patient involvement. Qual Saf Health Care 2003;12:93–99

Barriers to use and referral: challenge

2008-07-21T15:37:00.010-04:00

As time has passed I have been able to identify some of the potential barriers to use and to referral. I thought I would share these as they may benefit those of you who are interested in implementing a similar health information service at point of care (I know of at least one other centre that is considering doing so). That said I feel I should emphasize that this is based on my own personal observations and on the casually reported observations of others, rather than on any systematic study of the issue. We do intend to do a formal evaluation of the service, at which point we will be able to see whether these hypothesis are correct.

Not in order of importance:

Distractions in the waiting room. We have two big, beautiful, flat screen TVs in the waiting room that are impossible to ignore if you're sitting there, no matter which way you're facing. I just went out there to see what's playing. On one you have a talk show and on the other a soap opera. Even on mute they seem to be serious competition for my service. Gone are the interminable boring waits during which patients had time to think about where they were (the doctor's office), why they were there (sickness, checkup etc.), and maybe formulate a few questions they'd like answered. You may want to think about what could potentially distract your users from dropping in with questions. It could be TVs. It could be something else.

The good a) patient satisfaction no doubt increases (time flies when you're having fun), b) as far as the TVs are concerned, there is an opportunity for promotion, to develop programming that could include information about the clinic and the service. The bad people may be distracted from asking questions while they wait.
The InfoRx. On the part of the HP, there may be uncertainty about how to insert the referral into a transaction with the patient. It may be hard for HPs to know when would be a good time to mention it, or who might benefit. Time is certainly a factor and it is probably all too easy to forget to write up an InfoRx. Telling HPs that they should consider referring a patient whenever they make a new diagnosis, prescribe a new medication, or the patient is faced with a treatment decision may not be enough. The idea that a librarian is now acting as a member of the team at point of care and can have patients referred to them same as any other specialist may be new and it may take a long time before knowledge becomes practice, even when everyone buys in to the idea. My feeling is that this is a change management issue. It has to do with the gap between theory and practice, between intention and action.

Hoping to find something along the lines of the PLISSIT model* that could be used to assist health professionals at that crucial moment during their visit with the patient and family, I've been doing some reading about barriers to improving practice, and barriers to implementing practice guidelines and shared-decision-making. I think the latter is particularly relevant, because helping a patient or family member become well informed is a crucial component of the shared-decision-making process.**

The bad this is a very complex issue that may be difficult, if not impossible, to solve, The good this could be an opportunity to further develop a new model of health care, and there may be evidence to help us in the process.
The Internet. You will likely wish to have a web component to your service, as I have done. Our website is advertised in our H-PHIS brochures which are disappearing from the displays at a steady rate. Statistics show that the website is being visited regularly. From this I feel I can say that I am successfully helping people help themselves. I wonder if this makes them less likely to ask for help.

The good people will probably use a website if you have one, The bad people may go to your website instead of using your service.
Availability. It is unlikely that you will be on site and available every day all day. I am only on site 7 hrs per week, and the librarian at the Monkfield Medical Practice was also there only part time. This means that you may not always be available when needed, and not always be around to remind people to use the service and to guide people through the process. The point of having a service on site is to avoid the whole "out of site out of mind" thing.

The good the demand may be greater than the supply, which may justify an increase in staffed hours The bad not having enough hours to make the service work.

I would love to know your thoughts on these issues, so any comments or suggestions from my readers are very welcome. Since I began writing this post I have found a couple of models that may be useful in facilitating shared-decision-making. Stay tuned. I will discuss them in my next posts...

*
I came across this model recently while researching the question of how to help HPs bring up sexuality issues with gynecologic cancer patients.

**
Haines A, Kuruvilla S, Borchert M. Bridging the implementation gap between knowledge and action for health. Bulletin of the World Health Organization 2004;82:724-32.

Cabana MD, Rand CS, Powe N, et al. Why don't physicians follow clinical practice guidelines?: A framework for improvement. JAMA 1999;282(15):1458-1465 (doi:10.1001/jama.282.15.1458)

Freeman AC, Sweeney K. Why general practitioners do not implement evidence: A qualitative study. BMJ 2001;323:1100-2.

Gravel K, Legare F, Graham ID. Barriers and facilitators to implementing shared-decision-making in clinical practice: A systematic review of health professionals' perceptions. Implementation Science 2006;1:16. (doi:10.1186/1748-5908-1-16)

These are just a few of the articles I've found. I will try to include a more detailed list in a future post.

Sleep apnea (French and Italian): case

2008-06-30T13:59:00.004-04:00

Scenario

I'm always excited when I get to look stuff up in Italian. This time I'm asked to find information about sleep apnea in either French or Italian (preferably both).

Resolution

I look both terms up in HonSelect:

French: syndromes d'apnées du sommeil
Italian: sindromi di apnea del sonno
apnea: disturbi del sonno

I decide to look for the French first. I go to Passeport santé and type in apnées du sommeil. That brings me to two pages of interest: Apnée du sommeil: signe précurseur d'un AVC? and Vaincre les ennemis du sommeil, a book by Charles M.Morin.

CISMeF directs me to the website for the Ordre des dentistes du Québec. This has some information on snoring which also talks about apnea.

Next I look for information in Italian.

Benessere.com has an introduction to apnea but does not have the HonCode stamp of approval, so I keep looking.

I find another site called Dica33 which has some information on sleep disturbances including the complications of apnea. The site looks dinky but surprisingly has the HonCode badge right up at the top of the page for a change (I guess either they are really proud of it, or they are aware that the dinky design of the site might turn people off) and it turns out the site is developed by Edra spa, una società del gruppo ELSEVIER. Roughly translated they are a member of the Elsevier group.

Ureteral cancer: case

2008-06-23T15:51:00.006-04:00

Scenario

One of the GPs asks me for patient level information on the topic of ureteral cancer. One of his patients has been recently diagnosed and would like to have some information about it. Also he would like his patient to have some information about treatment options.

Resolution

There is a lot of information on urethral cancer but not a lot on ureteral cancer,* so I try a few places before finding a good overview on the BC Cancer Agency website.

BC Cancer agency > Patient/public info> Types of cancer > ureteral.

MedlinePlus has an entry in the encyclopedia: Cancer - renal pelvis or ureter.

Neither one goes into whole lot of detail about treatment options.

For that I find the National Cancer Institute's (NCI) PDQ®** on the subject through Onkolink. This can also be found on the NCI website of course, but Onkolink presents the information from the PDQ® in a way that is easier to navigate and read.

To get to the PDQ® though Oncolink: Oncolink > Types of Cancer > Urinary Tract Cancers > Urethral Cancer > NCI Resources.***

To get to it on NCI's website: NCI > A-Z list of cancers > S-Z > Ureter and Renal Pelvis, Transitional Cell Cancer

Last but certainly not least I Google ureteral cancer treatment options and find a great overview of ureteral cancer on the Fox Chase Cancer Center website which also discusses treatments at the various stages of the disease and the information is based on the NCI PDQ® as well.

* Click here for a definition of the two terms.

** What is PDQ ®?

*** To be perfectly honest this is the path as it appears on the Onkolink website. If you try to follow it it doesn't work. Urinary tract cancers does not appear on the list of cancers! But if you do a site search for ureter it will be the first hit on the list.

Parkinson's info English and Italian: case

2008-06-12T15:44:00.001-04:00

It's been a while since I posted a case. Here's one I like.

Scenario

A young man is referred to me by his GP. His father has been diagnosed with Parkinson's and he would like some information on the disease.

Resolution

As usual my first stop is MedlinePlus. I type in Parkinson's and in addition to the disease overview, find an interactive tutorial that might be helpful, as well as being directed to family doctor's page on the topic. I also recommend Mayo Clinic's section on the topic.

I can see that the man wants as much information as possible, as this is a new diagnosis and he is the primary caregiver. So, I add eMedicine's section on Parkinson's to my recommendations. I also don't want to get lazy and just recommend the same ones over and over out of habit, while overlooking other excellent ones.

A couple of other useful resources I recommend for someone wanting as much information as possible:

CMA.ca provides Canadian drug information (the drugs Canadian doctors prescribe are often not listed in American resources by the same name) .

Lab tests online, which provides information on whatever tests might be ordered in relation to a specific condition. In this case, Parkinson's is not listed as one of the conditions, however I explain that he can look up each test separately as well.

While we are talking he wonders whether it might be possible to find some information for his father in Italian. Luckily I speak Italian which will make the search easier, however I have already discovered that there is a dearth of reliable resources in Italian.

The first thing I do is take a look at Medline's new multiple language resource to see if anything is there. Unfortunately there is not. I was very excited when the resource was launched a few weeks ago, as I'm sure many people were. Since then the initial excitement has worn off. There is great potential, but not much on offer just yet. I will keep checking as new topics are entered.

The first thing I do is look up the exact term in Italian. I go the the HONselect tool that allows you to look up MeSH headings in different languages. I type in parkinson's, select Parkinson disease, click on Italian and am told that the correct term is Malattia di parkinson. So far so good. I then go to the one Italian HONcode resource I have been able to find: Paginemediche.it*. I type in the term and get a list of clustered results. Under malattie e condizioni (diseases and conditions) I see 9 hits. Unfortunately none of these hits is directly relevant. I click on one to see how it relates to Parkinson's and discover that in this resource it is listed as Morbo di Parkinson. So now I do a search for that, only to discover that, while listed in the glossary and referred to in relation to malnutrition, incontinence, Huntington's etc., there is no page on that topic. So I have reached a dead end.

I do a Google search which I am unable to recall at the time of writing, and am able to find a multiple language resource that is new to me, NSW Multicultural Health Communication Service, and this one has a long list of topics in Italian, including the one I'm looking for. I am not surprised to find that NSW is Australian, as the country always has excellent health resources in multiple languages. Along with the one on Parkinson's I print the full list of topics for the man in case any other questions come up., and I add the resource to MyHq.

*This resource is only useful if you speak Italian, as there is no English version.

Privacy and professional autonomy: challenges

2008-06-09T14:19:00.006-04:00

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.

Canadian Health Libraries Association conference: update

2008-06-06T12:35:00.006-04:00

Halifax was lovely as always but it's good to be home.

As promised I have posted a link to my April 10 lecture at McGill's Continuing Medical Education (CME) Thursday Evening Learning Series. I think I did a better job at McGill CME so I'm glad that's the one filmed for posterity. It seems I do better in front of the camera than I do playing Twister while I present.* Good to know.

I won't try to summarize the conference itself. Greg Rowell has done a much better job than I could. He's written a series of letters that Dean Giustini posted on his Google Scholar blog on June 2-4 (I get a mention in letter no. 3:-). Ryan Deschamps has recapped his own presentation here. Ryan and I went to school together and I was sorry not to have been able to see him speak (I arrived in Halifax the next day).

All the presentation slides (including mine) should be available on the CHLA website soon.

The two things the conference has got me thinking most about are Professional development (what should my next steps be?) and society participation (what's the big deal and how can I get involved?). I know there are proven ways to do both, but I am an unconventional cookie and will have to find my own way.

One of my favourite sessions at the conference was the round table discussion which asked the question: are we preparing health information professionals for the future? The panel included a spanking new graduate from Dalhousie SIM, Annie Noble, a slightly less but still recent graduate, Lori W. Leger, Ada Ducas who is the head of the Health Sciences Libraries at University of Manitoba, and two library school directors, Margaret Ann Wilkinson from Western University, and Fiona Black from my very own SIM (a wonderful speaker).

The presentations were very interesting and the discussion that followed even more so. It was unfortunate that we ran out of time just as things were getting good. I would have willingly given up the half hour break that followed (hint hint).

The overall consensus was that we are indeed preparing information professionals for the future, or at least the immediate future, although Ada Ducas expressed concern over the quality of candidates accepted into LIS programs. For myself, I did feel prepared when I graduated.

Here's another question: are we preparing information professionals for the less immediate future? i.e. not the first job out of school, but the one after that (hence my preoccupation with Professional development). Any thoughts?

*At CHLA the set-up was a bit awkward. The mic was way to the right and the laptop way to the left with the tiniest mouse I've ever seen. This meant that I had to reach over and across with my right hand (I am right handed) in order to switch slides, while keeping my mouth close enough to the mic to get sound.