Health in the news: Discussion

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 criteria, 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.

Sleep apnea (French and Italian): case

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.

Lab tests: case

Scenario

A middle-aged woman makes an appointment to see me. She has been feeling very tired lately and has an assortment of aches and pains and her GP has ordered several tests in the hopes of zeroing in on a diagnosis. She would like to know exactly what is being tested for. I do not get the impression that she is likely to jump to conclusions regarding her diagnosis. It seems rather that she is curious about the process and wishing to be an active participant.

Resolution

The woman has a computer at home with Internet access, and often searches for health information online, so I give her a tour of Lab Tests Online (HONcode accredited) so that she can look up each of the tests on her own at her leisure.

This is one of my favourite resources. You can type in keyword or look up the test alphabetically by name. You can also select a disease or condition to see which tests are typically used in diagnosis or monitoring, or by age group to see what screening tests are routinely ordered.

The reason I like the site so much is that it gives a very comprehensive overview of each test, why it is ordered, how it is done, what is being tested, and in addition to that, information about the disease or condition is provided (signs and symptoms, treatments, other tests), along with answers to common questions specific to each test (such as: how will exercise or diet affect the element being tested, what other tests might be given for the same condition etc.), and links to other relevant resources. Any question that remains unanswered can be asked by following the link to a confidential request form on the American Society for Clinical Laboratory Science website, which is then answered by a certified clinical laboratory scientist.

CAM for HCV: case

Case

Scenario

One of the health professionals (HP) at Herzl comes to me asking that I meet with one of her patients (a young man) who has Hepatitis C and is resisting interferon. The HP tells me her patient is interested in complementary and alternative therapies (CAM). Although she would prefer that he accept the recommended treatment she is open to discussing alternatives with him. She hopes the young man's specialist will be open to exploring CAM treatments.

Resolution

When the young man meets with me I mention to him that since he is not sure about interferon a decision aide might help him decide. He hesitates but is amenable once I explain that the aid will not force him to decide one way or another but will rather give him a structure for clearing his thoughts. While we talk he shows me a link to a resource he has already accessed on the subject. It turns out to be a good resource, www.hepatitis-central.com, that has HONcode accreditation which is at present undergoing annual review.

I give the patient some information I had prepared ahead of time: information about HCV and CAM on the Public Health Agency of Canada website and about interferon from MedlinePlus, a decision aid from the Ottawa Health Research Institute, and a research report from the National Centre for Complementary and Alternative Medicine, as well as some fact sheets from the HCV Advocate website.

The patient is very happy with what I have printed for him. In addition he would like to find some information about the use of vitamine C as a therapy, having heard that it can cure HCV completely. We look together and find a few references to vitamin C and HCV but I am not able to find anything definitive or evidence-based, although something is mentioned on Hepatitis Central that might be worth showing to his specialist. We discuss some criteria to use in order to judge whether a website can be trusted including: who maintains the site? who wrote the article? when was it updated? is the information cited?

Discussion

It remains to be seen whether the patient will decide to accept the interferon treatment or whether his specialist will be amenable to exploring CAM therapies.