Highlight HEALTH

The HONcode is the oldest and most widely used ethical code concerning the quality and trustworthiness of medical and health related information available on the internet. It was created for evaluating medical and health websites and outlines eight ethical standards in the presentation of medical and health information online.

To become HONcode accredited and display the HONcode seal, there is an application process and an annual review. The aim of the HONcode is to protect the reader by ensuring that they know the source and purpose of medical and health information they read on the internet.

A new ethical code designed specifically for the healthcare blogger is the Healthcare Blogger Code of Ethics. The code allows the blogger to identify the standards by which they blog. The Healthcare Blogger Code of Ethics covers issues pertaining to confidentiality, privacy and commercial disclosure. It offers some protection for both the reader, in terms of blogger disclosure of credentials and financial interests, and the blogger, by providing documentation of their blogs focus and intent.

A second logo is available for those non-medical bloggers who post medically-oriented content in accord with the code but did not feel it appropriate to represent themselves as medical bloggers.

Healthcare Blogger Code of Ethics

1. Clear representation of perspective

Readers must understand the training and overall perspective of the author of a blog. Certainly bloggers can have opinions on subjects outside of their training, and these opinions may be true, but readers must have a place to look on a blog to get an idea of where this author is coming from. This also encompasses the idea of the distinction between advertisement and content. This does not preclude anonymous blogging, but it asks that even anonymous bloggers share the professional perspective from which they are blogging.

2. Confidentiality

Medical bloggers must respect the nature of the relationship between patient and medical professionals and the clear need for confidentiality. All discussions of patients must be done in a way in which patients’ identity cannot be inferred.

3. Commercial Disclosure

The presence or absence of commercial ties of the author must be made clear for the readers. If the author is using their blog to pitch a product, it must be clear that they are doing that. Any ties to device manufacturer and/or pharmaceutical company ties must be clearly stated.

4. Reliability of Information

Citing sources when appropriate and changing inaccuracies when they are pointed out.

5. Courtesy

Bloggers should not engage in personal attacks, nor should they allow their commenters to do so. Debate and discussion of ideas is one of the major purposes of blogging. While the ideas people hold should be criticized and even confronted, the overall purpose is a discussion of ideas, not those who hold ideas.

If these are principles you use in your blogging and would like your blog added to the list of websites agreeing to the code, either go the the Healthcare Blogger Code of Ethics website or email the site administrator.

Healthcare Vox published an article earlier this week entitled “Is the Medical Blogosphere Dying?”, commenting on the number of well-known medical bloggers leaving the blogosphere. Although I don’t think the medical blogosphere is dying, recent events have been a catalyst for change and it’s definitely undergoing a transformation.

The Blog That Ate Manhattan agrees, saying “I for one do not think that the medical blog is an endangered species”. The article shares some thoughts on medical blogging and some of the things learned over the past few months.

Dr. Dinosaur shares these thoughts:

“Sometimes several blogs disappear within a short span of time, leaving the erroneous impression that the events are somehow connected. The concern about “Who’s next?” isn’t all that different from the forty-five year old man with a neighbor and cousin who each dropped dead of heart attacks in the last two weeks. To the patient, it makes perfect sense to worry that the same thing could happen to him. It’s much easier to see coincidence for what it is when we can take a step back and re-connect with reality.”

A number of healthcare bloggers have expressed their intent to apply for accreditation by the Health On the Net (HON) Foundation. As I’ve written in the past, the HONcode addresses the issue of reliability and credibility of healthcare information found on the internet. There are 8 principles to the HONcode, including sections on authority, privacy, attribution, justifiability and transparency. From the HONcode website:

“The HONcode is not an award system, nor does it intend to rate the quality of the information provided by a Web site. It only defines a set of rules to:
- hold Web site developers to basic ethical standards in the presentation of information;
- help make sure readers always know the source and the purpose of the data they are reading.”

Thus, the HONcode is designed to protect the reader. However, little is offered in the way of protection for the blogger. This isn’t surprising given that people didn’t blog back in 1996 when the HONcode was established. However, given recent events, that is the issue: protection for the anonymous medical blogger.

Liana over at Med Valley High places blogging “within the scope of narrative medicine”, maintaining that it’s a beneficial resource for patients. Dr. Val suggested something similar in her comments here on Highlight HEALTH recently, maintaining that parables are a legitimate teaching tool. The question is, how to communicate to the public that there are very strict rules regarding what doctors can and can’t say on a blog? Names are changed and details are blurred not to dodge privacy laws, but to comply with them. Scalpel reviewed the HIPAA section that he felt applies to medical bloggers and made the following conclusion:

I’m not certain that non-anonymous bloggers should present medical cases at all unless the cases are radically altered or very generalized. If it is known that a physician, nurse, or other healthcare worker practices at a certain facility, for example, then the second requirement [obtains individually identifiable health information relating to an individual] seems to be violated. Similarly, posts stating that a certain patient event occurred “last night” or “last week” seem to be in violation.

Given the recent bad press regarding doctors and blogging, I think he has valid concerns that should be addressed.

Dr. Rob over at Musings of a Distractible Mind has started some dialog on a code of ethics for medical bloggers, creating a new blog, the Medical Blog Code of Ethics, and proposing a draft code for healthcare bloggers. He says that:

While I like the idea of the HONcode (and am still working on becoming certified), I want something less aimed at medical content sites (sites that give advice to non-medical people) and more focused on medical bloggers (medical professionals and patients).

N=1 over at Universal Health gave the current draft a test run - check it out.

Hsien Lei of EyeOnDNA suggests that:

… we also need to look at promoting blogging as a legitimate platform which should be respected and not subject to anyone’s influence except the blogger’s own truth. As long as we are willing to stand behind our words, we should face no fear of repercussions.

Indeed, I couldn’t agree more. I encourage everyone to read the draft code over at Medical Blog Code of Ethics and contribute your thoughts.

A recent survey from Zogby International finds that more than half of Americans (55%) believe bloggers are important to the future of American journalism and 74% said that citizen journalism and Web 2.0 websites such as NowPublic will play a vital new role [1].

NowPublic Crowd Powered Media describes itself as:

” … a participatory news network which mobilizes an army of reporters to cover the events that define our world. In twelve short months, the company has become one of the fastest growing news organizations with thousands of reporters in over 140 countries. During Hurricane Katrina, NowPublic had more reporters in the affected area than most news organizations have on their entire staff.”

NowPublic citizen reporters can do several things, including contribute news stories, blog posts and photos, rank stories and add their own comments. Additionally, they can “Crowd Source” a story, allowing others to add photos, videos and audio to the story. Regardless of ranking, NowPublic editors can bump stories to the the front page.

The Zogby survey also ranked news sources:

“More respondents (81%) said Web sites are important as a source of news, although television ranked nearly as high (78%), followed by radio (73%). Newspapers and magazines trailed – 69% said newspapers and 38% said magazines were important. While blogs were rated as important sources of news by 30% of the online respondents, they were not considered as good a news source as the backyard fence – 39% said their friends and neighbors are an important source of information.

However, a majority of the nationwide online respondents said Internet social networking sites and blogging will play in important role in the future of journalism. But they added that trustworthiness will be important to the future of the industry – 90% said trust will be key.”

In 2006, Envision Solutions and The Medical Blog Network (now Trusted.MD) conducted a survey of medical bloggers, the results of which were presented at the first Healthcare Blogging Summit (December 2006) in Washington, D.C. The survey, Taking the Pulse of the Healthcare Blogosphere: A global online survey of healthcare bloggers, is freely available for download.

The survey population was bloggers devoting at least 30% of posts on their blog to healthcare; a total of 214 healthcare bloggers took at least part of the poll, with 171 answering every question in the survey. Respondents were evenly split between men (54%) and women (46%), with 76% of bloggers originating from the U.S. and 3% to 5% from Canada, the U.K., Australia and the Netherlands.

With respect to trust and credibility, just over half (53%) of respondents believe that between 41% to 80% of healthcare blogs are written by people whose statements they take at face value [2]. More than three quarters (77%) of respondents have either a low or moderate level of trust in their blogging colleagues. Perhaps not surprisingly, heathcare bloggers are critical of fellow bloggers’ statements. Negative comments regarding trust and credibility revolved around lack of mainstream representation, overt sarcasm and bias, and recycled information without original input. Positive comments tended to focus more on insight and quality of writing.

Indeed, some bloggers like Yehuda have called for a “Bloggers Code of Ethics”. This is different than the “Bloggers Code of Conduct” proposed by Tim O’Reily, in that it includes sections specifically on accuracy, attribution, completeness, and originality in addition to civility, fairness, respect, privacy, safety, confidentiality and copyright. A modular code has been suggested, allowing individual bloggers to choose a level of values that they want to assert.

Another source, the Heath On the Net (HON) Foundation, is attempting to guide the growing community of healthcare providers and consumers on the World Wide Web to sound, reliable medical information and expertise through quality assessment and systematic and stringent peer review. The HON Foundation Code of Conduct (HONcode) addresses the issue of reliability and credibility of healthcare information found on the internet, and includes sections on Attribution and Justifiability.

In my opinion, when it comes to blogging about healthcare, trust and credibility are paramount. I question the reliability of blog sources for news. In fact, I even question more “factual” information from non-blog websites. This was one of my motivations for creating Highlight HEALTH. I wanted to create a health resource that provided evidence to support the information presented. For this reason, every article on Highlight HEALTH cites source material and provides references. In addition to articles I write discussing scientific results (the entries of which are maintained and updated when new data is published), Highlight HEALTH serves as a health news aggregator. In some cases I provide additional insight and commentary, and the site provides a forum for free discussion. You can read more about Highlight HEALTH on the about page.

The second Healthcare Blogging Summit will take place in Las Vegas, Nevada at the end of this month (April 30th, 2007) with an emphasis on the practical lessons that could be applied by healthcare professionals and organizations.

References

1. Most Say Bloggers, Citizen Reporters to Play Vital Role in Journalism’s Future. Zogby Poll. February 13, 2007.
2. Taking the Pulse of the Healthcare Blogosphere: A global online survey of healthcare bloggers. Envision Solutions, LLC and The Medical Blog Network. December 2006.