Highlight HEALTH

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.

I’m very pleased to announce that Highlight HEALTH is now an HONcode accredited website.

As I wrote in my previous article The Trust and Credibility of Healthcare Blogs, I believe that when it comes to blogging about healthcare, trust and credibility are essential. One of the principle motivations for creating Highlight HEALTH was to develop a health resource that not only provided information on dietary supplements, nutrition and health news, but which presented evidence to support that information.

In both The Trust and Credibility of Healthcare Blogs and Healthcare Self-Management Suggestions for e-Patients, I wrote about the Health On the Net (HON) Foundation, a non-profit organization that 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.

There are 8 principles of the HON Code of Conduct (HONcode):

1. Authority - Indicate the qualifications of the author(s).
2. Complementarity - Information should support, not replace, the doctor-patient relationship, which is the desired means of contact.
3. Privacy - Respect the privacy and confidentiality of personal data submitted to the site by the visitor.
4. Attribution - Cite the source(s) of published information, date and medical and health pages.
5. Justifiability - The website must back up claims relating to benefits and performance.
6. Transparency - Accessible presentation, accurate email contact of authors.
7. Financial disclosure - Sponsorship should be transparent and funding sources identified.
8. Advertising policy - Clearly distinguish advertising from editorial content.

The application process for HON accreditation is straightforward:

1. Complete the HONcode questionnaire.
2. The HONcode team will send you an email confirming receipt of your submission and visit your site for review.
3. If your site meets HONcode standards, you’re finished (goto step 5). Otherwise, the HONcode team will email comments regarding modifications that need to be made to your site to comply with all 8 HONcode principles.
4. Once the changes have been made, you reply to the HONcode team email indicating you’ve made the necessary changes. The HONcode team will then revisit your site to certify compliance.
5. Once accepted, you will receive a unique HONcode identification active logo that you can add to the homepage of your website.

Complete instructions can be found here.

Although self-publishing of the HONcode logo has been criticized in the past [1], it was rebutted as exaggerated and out-of-date evidence [2], stating that:

All systems are vulnerable to abuse, but HON has a good record of quickly identifying and contacting most offenders. This is thanks to the sense of shared responsibility we encourage among Webmasters, information providers, and vigilant users of the health Internet.

Indeed, HON is the largest voluntary accreditation network on the Web with over 4,700 HONcode accredited websites that honor the standards for disclosure and responsibility in online medical publishing [3].

Rob over at Musings of a Distractible Mind recently wrote about the “Bloggers Code of Conduct” proposed by Tim O’Reily and received some positive comments. Val Jones mentioned the HONcode when suggesting a logo/approval process for ethical bloggers. Her blog is hosted on Revolution Health, an HONcode accredited website.

Do you follow the HONcode principles described above? I encourage other medical/health websites and blogs to seek HONcode accreditation.

References

1. Eysenbach G. Towards ethical guidelines for e-health: JMIR theme issue on eHealth ethics. J Med Internet Res. 2000 Jan-Mar;2(1):E7.
   View abstract

   Read the full article here.

2. Nater and Boyer. Debate about evaluation and monitoring of sites carrying the HON-Logo. J Med Internet Res. 2000 Apr-Jun;2(2):E13.
   View abstract

   Read the full article here.

3. Boyer and Geissbuhler. A decade devoted to improving online health information quality. Stud Health Technol Inform. 2005;116:891-6.
   View abstract

We are witnessing a transformation of healthcare in the information age. The Internet has become a powerful healthcare resource for both physicians and patients. e-Patients represent a new type of informed health consumer, a term encompassing both primary patients who use the Internet to educate themselves about a given medical condition for their own illness and the friends and family members who go online on their behalf [1].

In 2003, a WebMD study found that the Internet was the primary source of health information for consumers, spending more time researching health information online than any other media source [2]. According to another study, Internet health seekers reported two effects of online health resources - better health information and services, and different (but not always better) relationships with their doctors [3]. A 2005 survey found a significant number of respondents that turn to the Internet for health issues. When extrapolated to millions of American adults who utilized the Internet for decision making, 7 million online users said the Internet played a crucial or important role as they coped with a major illness, and another 17 million online users indicated that the Internet played a crucial or important role as they helped another person with a major illness or medical condition [4]. However, only 15% of Internet health seekers consistently check the source and date of health information they find online and an additional 10% check these two essential information quality indicators “most of the time” [5].

These numbers underscore the need for a system to evaluate reliability and credibility of healthcare information found on the Web. Indeed, a recent study by The Pew Internet & American Life Project, an organization that explores the impact of the Internet on (among other things) healthcare, found that 73% of health seekers have at some point rejected information from a website during a health search due to lack of credibility [6]:

“Still, 73% of health seekers have at some point rejected information from a website during a health search for one reason or another. Here are the major reasons they cite for turning away from a site:

• 47% of health seekers have decided not to use information they found because the website is “too commercial and seemed more concerned with selling products than providing accurate information.”
• 42% of health seekers have turned away from a health website because they couldn’t determine the source of the information.
• 37% of health seekers have turned away from a health website because they couldn’t determine when the information was last updated.
• Other reasons for turning away: no visible “seal of approval”, sloppy or unprofessional design, or the presence of bad information (as judged by the health seeker or the health seeker’s own doctor).”

The most widely recognized standard-setting organization on the Internet, 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 sites that follow the HON Foundation’s code of conduct can display a HONcode seal. The HONcode seal links to a registration status report on the HON Foundation site and allows a visitor to verify the site’s registration. Over 4,700 HONcode accredited websites honor the standards for disclosure and responsibility in online medical publishing, making it the largest voluntary accreditation network on the Web [7]. Thus, e-Patients using the Internet to educate themselves about a given medical condition can have confidence that websites bearing the seal comply with the HONcode standard for trustworthy health information.

I’ve written a number of articles here on Highlight HEALTH that advocate taking an active part in managing your health. But how much is too much? In his article Self-Management: How Far Should you Go?, Dr. Charlie Smith writes:

“In general, it seems proper for patients to take responsibility for educating themselves about their condition, carefully consider questions they would like the physician to answer, and commit themselves to an overall fitness plan. The physician should commit to monitoring their condition, obtaining appropriate laboratory and screening tests at the right time, performing periodic examination, filling and refilling medication prescriptions, and providing recommendations and suggestions about modifications to treatment approaches.

But, this is not a clearcut forumula and, I think, the only way to strike a proper balance in defiing the right roles for an empowered patient-doctor relationship is to maintain an open attititude, discuss the issues regularly, and be prepared to adjust roles over time.”

With that in mind, here are some suggestions for managing your own healthcare in partnership with your doctor:

• Keep a copy of all your health records.
• Request an immunization schedule and maintain a record of your child’s immunizations.
• Use the Internet to educate yourself about your medical conditions.
• Ask both your doctor and pharmacist questions when you are prescribed medication.
• Research your medications and familiarize yourself with possible drug interactions.
• Prior to visiting your doctor, make a list of all prescription and non-prescription medications you are currently taking. Non-prescription medications include dietary supplements (vitamins, herbs) as well as over-the-counter products such as cold medicine and pain relievers.
• Ask if you can email your doctor with questions between visits.
• Maintain a journal of doctor visits with details on your symptoms, what was discussed and what was done (e.g. medications prescribed, x-rays ordered).
• Provide your doctor with regular feedback regarding office visits and staff.
• Maintain a healthy lifestyle. Don’t forget to wash your hands!

I encourage e-Patients and physicians to comment with their own suggestions.

References

1. Ferguson and Frydman. The first generation of e-patients. BMJ. 2004 May 15;328(7449):1148-9.
   View abstract
2. Research Reveals That Internet Has Become Primary Means by Which Consumers Access Health Information. WebMD press release. 2003 Feb 10.
3. Fox S and Fallows D. Health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access. Washington (DC): Pew Internet & American Life Project Report. 2003 Jul 16.
4. Horrigan J and Rainie L. Reports: Family, Friends and Community. Washington (DC): Pew Internet & American Life Project Report. 2006 Apr 19.
5. Fox S. Online Health Search 2006: Most internet users start at a search engine when looking for health information online. Very few check the source and date of the information they find. Washington (DC): Pew Internet and American Life Project. 2006 Oct 29.
6. Fox S and Rainie L. How Internet users decide what information to trust when they or their loved ones are sick. Washington (DC): Pew Internet and American Life Project. 2002 May 22.
7. Boyer and Geissbuhler. A decade devoted to improving online health information quality. Stud Health Technol Inform. 2005;116:891-6.
   View abstract