Highlight HEALTH

Traditional media (i.e. television, print) are the principal sources of science information for the public. This is changing however; adult home broadband users under the age of 30 report that the internet is the most popular source for science news and information [1]. Unfortunately, while the public is consuming science reporting today more than ever before, the media is doing a poorer job covering the field. This is particularly troublesome for genomic medicine and personal genetics, since many physicians who lack training in genomics and genetics frequently get their information from the same mainstream media sources as the public.

Moving knowledge from the world of scientists into the public arena, where there are limitations on both space and reader interest, can be a challenging task. Reporting on medical genomics and personal genetics requires a translation in both language and phrasing. A 2004 study addressed popular media’s coverage of genomics, tracing reports from their original source in a scientific journal through to media publication [2]. The researchers found a significant difference in content between the original research paper and the news report, demonstrating the failure of mainstream media to accurately translate and report genomics for the public. However, until today, no standards existed to hold journalists accountable for accurate reporting of genomic medicine.

The HelixGene Foundation for Genomics was created to address the issue of reporting accuracy in medical genomics. Developed in response to significant misinformation published in a recent New York Times article discussing Google co-founder Sergey Brin and risk of Parkinson Disease, the Foundation organizes the distributed efforts of academics. The HelixGene Foundation grades publications to hold the media accountable for honest and accurate reporting of medical genomics, acting as a liaison between researchers, doctors and journalists. Additionally, the HelixGene Foundation will publish press releases about mutations to help journalists better report medical genomics and produce media about medical genomics to educate others.

Genomic medicine is believed to be the future of healthcare. Indeed, it is poised to improve disease diagnosis, therapy and prevention. All physicians will soon need to have a fundamental grasp of genomic medicine; to understand the concept of genetic variability, its interactions with the environment and its implications for patient care [3]. For both public and physician education, medical genomics and personal genetics must be accurately reported by media. The HelixGene Foundation for Better Genomic Medicine will review media reports on genomic medicine, in essence providing a peer review for accuracy and honesty.

Additional information on Genetics and Genomics for patients and the public, as well as health professionals, can be found at the National Human Genome Research Institute website. A publicly accessible New England Journal of Medicine article from 2002, Genomic Medicine — A Primer, is also recommended [3].

Additional resources on genome-based medicine or personalized medicine can be found in the Personalized Medicine category of the Highlight HEALTH Web Directory.

The media isn’t doing its job educating the public about genomic medicine and personalized genetics. The HelixGene Foundation will thus provide a valuable resource to verify media reports and hold journalists accountable for the accurate reporting of genomic medicine.

References

1. The Internet as a Resource for News and Information about Science. Pew Internet & American Life Project. 2006 Nov 20.
2. Kua et al. Science in the news: a study of reporting genomics. Public Understand. Sci. 13: 309-322. 2004.
3. Guttmacher and Collins. Genomic medicine–a primer. N Engl J Med. 2002 Nov 7;347(19):1512-20.
   View abstract

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.