In the context of the looming deadline for comments on the FDA’s development of social media guidelines, the Medlib’s Blog Carnival theme this month was on free speech in health information. Briefly, the FDA has a long history of managing and establishing guidelines to prevent unethical publication of inaccurate or misleading health information from persons or corporate entities promoting the use or sales of drugs or medical devices. The flip side of this is to encourage informed decisionmaking based on high quality unbiased health information. There are some excellent contributions for the carnival looking at various aspects of this complicated issue, and then there were some other contributions that are more along the lines of being useful and interesting for medical librarians. I’m happy to include both groups here.
At MPH Degree, the focus was on managing your medical records and personal health information, absolutely critical content in the age of electronic personal medical or health records. They provide 10 tips for managing not only your personal privacy and access to your data, but also opportunities for “free speech” that you might not want to have available! Basically, the 10 ideas were (1) keep a copy handy, (2) know your rights, (3) correct misleading information, (4) be careful what you share at health fairs, (5) ask your old doc to destroy your records, (6) keep your social security number safe, (7) watch out for sloppy recordkeeping, (8) check HIPAA policies and procedures at your clinics & hospitals, (9) keep an electronic backup, (10) learn about how docs share information. Read it.
There’s more.
MPH Degree: 10 tips to help you take control of your medical records: http://mphdegree.org/2010/10-tips-to-help-you-take-control-of-your-medical-records/
The Health Sensei offers a very interesting and provocative post on ‘bad’ healthcare trends. I don’t expect people to agree with all of these, but they certainly raise issues about the potential impacts of too little access to health information, over control of health information, too much access to health resources (such as online drugstores). From the cost of gas to telemedicine, the digital divide to pay-as-you-go access to care, these 17 trends all impact on care, and are all worthy of serious discussion regarding the issues and impacts. You’ll see the FDA mentioned a lot in this post, from issues of pharma compliance (or lack thereof) with already existing FDA policies to problems with awareness of and access to safety information provided by the FDA itself, all important issues in developing future policies. This is a post I not only bookmarked, but downloaded to save for future reference.
The Health Sensei: 17 Healthcare Trends that Are Actually Bad for Us. http://mastersinhealthcare.org/2010/17-healthcare-trends-that-are-actually-bad-for-us/
Laika provided not one, but TWO excellent posts. The first one, “NOT ONE RCT on Swine Flu or H1N1?! – Outrageous!,” discusses the issue of popular news and hype as opinion influencers in comparison with actual research. Taking H1N1 as an example, she begins with a Twitter post and popular press, then discusses when it is appropriate to expect what kind of evidence in support of a question, simple tips for finding better quality evidence, as well as specific scientific and clinical contextual issues that beautifully illustrate not just issues of scientific research and methodology, access to information and information quality assessment, but also quite a bit of useful information about H1N1 itself! Laika provides a strong voice for clear reason and balanced information, but at the same time respects the importance of scientific dialog and communication in shaping the evolution of what we know about any given topic.
Laika’s MedLibLog: NOT ONE RCT on Swine Flu or H1N1?! – Outrageous!. http://laikaspoetnik.wordpress.com/2009/12/16/not-one-rct-on-swine-flu-or-h1n1-outrageous/
In her second post for this Carnival, Laika again zeroes in on the issue of dialog in science, and the broader issue of respect. This is true not just for dialog between scientists, as in the example she discusses, but even more so among the public and news media. The life lessons learned by Laika in her tale of disrespect and influence among scientists are ones we should all keep in mind when observing disagreements about science. I wanted to cheer when I read her excellent, methodical review of the limits of evidence-based medicine, and when one should or should not apply its finding to a given situation. While EBM is a very useful tool, I also have encountered worrisome instances in which a useful, low-risk, low-cost intervention is not used because there are not yet sufficient RCTs or because it is being researched for XYZ use but hasn’t yet been approved for it by the FDA. When EBM becomes a barrier to good clinical care, we have a different problem. I particularly liked the example she gave of a systematic review finding insufficient evidence to support the use of parachutes when jumping from a plane, and the selection of quotations from comments. My favorite, succinct and clear, was this line from a clinician at my institution, “RCTs aren’t holy writ, they’re simply a tool for filtering out our natural human biases in judgment and causal attribution. Whether it’s necessary to use that tool depends upon the likelihood of such bias occurring.” Read, read, and read this post again.
Laika’s MedLibLog: #NotSoFunny – Ridiculing RCTs and EBM. http://laikaspoetnik.wordpress.com/2010/02/01/notsofunny-ridiculing-rcts-and-ebm/
In an oblique connection, Novoseek, the innovative biomedical web search engine covering Medline, grants and online publications, offered a post on their new feature, allowing searchers to limit by publication type. While this doesn’t directly connect to free speech (rather the reverse) it does directly connect to quality of health information and control through peer review, both of which are implied contextual issues. Being able to use a health specific search tool automatically focuses results on a narrower and higher quality subset of the information available on the web. Being able to limit by publication type enables the searcher to slice the search even more finely, focusing on just the highest quality health information available.
Novoseek: Tip #1 to improve searches in novoseek – Filter results by publication type. http://blog.novoseek.com/index.php/resources/tip-1-to-improve-searches-in-novoseek-filter-results-by-publication-type.html/
PS. While you are taking a look at that blogpost, you might want to also take a look at an earlier post from Novoseek called The importance of context in text disambiguation. It is a kind of geeky, technical post, but the fundamental concept is central to how humans (as well as computers) identity quality when they see it.
Really not on topic, but the next post is such a handy overview for helping patients in poor economic times that I wanted to be sure to include it. Now, when you read this one remember to keep in mind the privacy overviews mentioned in some of the posts above, ask for help from a librarian for the searches mentioned (many will have lists of local free or reduced-cost clinics), and don’t stress out over the “if you try hard enough” phrase at the end — sometimes things don’t work out even when you try hard, but if you don’t try, there isn’t even a good opportunity. So these are some ideas you can try, a good starting place.
Radiologic Technician Schools: 11 Ways You Can Get Medical Care for Free. http://radiologictechnician.org/2010/11-ways-you-can-get-medical-care-for-free/
Another interesting off-topic post is the following one listing iPhone apps for personal health management. For myself, I might feel a little hesitant to place an overwhelming amount of confidence in these without talking with a healthcare provider to make sure the recommendations are safe with my own personal health background, but no matter what, I want to know these exist and will be interested in checking them out!
Radiology Tech Training: Top 6 iPhone Apps to Manage Your Own Health. http://radiologytechtraining.org/2010/top-6-iphone-apps-to-manage-your-own-health/



