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BUZZ: Wiki-What?

Posted Feb 21 2014 12:00pm

As my own daughters are beginning to do more and more research online for school, the same phrase I heard throughout my college years (yes, only my college years since internet was brand new and pretty non-existent at my little K-12 school) keeps being blurted out:

"Wikipedia is NOT a reliable resource to use for research!"

It makes me cringe a little... only because it is always the very first thing that comes up in a search for anything and it nearly always brings a great list of references and information to elicit a valid amount of information. image courtesy of www.techie.com


This is why rewriting the definition of hydranencephaly, especially on Wikipedia , was important to me and one of the first accomplishments made by Global Hydranencephaly Foundation in the first year. 

And now I have a reliable resource that tells me how truly important this resource is, even within the medical community... as well as a few more medical communities to tackle changes within!

From the article, "... utilize social media to improve the quality of their customer service, gain feedback on new initiatives, and crowd-source ideas for improvements. A growing segment of patients are likely to appreciate this and may demonstrate increased loyalty."

Doctors, Not Just Patients, Use Wikipedia, Too: IMS Report
Miriam E. Tucker
February 05, 2014

Wikipedia isn’t just a popular source of health information for patients, but apparently for physicians and other healthcare professionals (HCPs) too, according to a new report from the IMS Institute for Healthcare Informatics.


"Wikipedia is the leading single source of healthcare information for patients and healthcare professionals...[and] nearly 50% of U.S. physicians who go online for professional purposes use Wikipedia for information, especially on specific conditions," the researchers write.

That was among the data points from the January 2014 report, Engaging Patients Through Social Media . The report also correlates medication use with Wikipedia views, finding that this relationship differs by age among information seekers.

Research by the IMS Institute, which collects data and collaborates with the public and private sector, also shows that Wikipedia health pages are updated substantially and often, suggesting a need for better curation.

The report looked at what are called "social media channels," including Wikipedia, Twitter, Facebook, and YouTube because they "have not been examined in detail," the researchers write. In common among the channels are that they "allow the creation and exchange of user-generated content."

The researchers based their findings on search engine rankings and page view statistics, writing Wikipedia "is a prominent source of online health information compared to the other health information providers studied [in the past]," they write.

The IMS also examines the ways in which regulators, pharmaceutical companies, and healthcare professionals (HCPs) use social media, and issues a "call to action" for each stakeholder group based on the findings.


"Patient trust in clinicians and the broad reach of social media puts healthcare professionals in a prime position to drive healthcare topics on the Web," the IMS notes. However, "Much like the pharmaceutical industry, healthcare professionals are usually perceived as laggard adopters of new technologies."
Among the report's recommendations to HCPs, "Effective engagement by HCPs with patients occurs where they feel most comfortable, including in social media forums. The approach taken by HCPs to social media must therefore be developed in order for HCPs to fulfil their professional mission."

That's essentially what the American College of Physicians (ACP) did in a policy statement issued in April 2013 in conjunction with the Federation of State Medical Boards (FSMB), offering detailed guidelines for physicians on appropriate use of social media, ACP president-elect David A. Fleming, MD, told Medscape Medical News.


"To me, [the IMS recommendation] is sort of a soft mandate, where professional organizations and groups are expected to approach social media in a professional way to meet their professional mission…. It really is up to us to police ourselves and to inform ourselves about what appropriate behavior is," Dr. Fleming said.
Whereas the ACP/FSMB guidelines addressed the specific scenarios of digital interactions between physicians and patients, physician blogging and posting on social media sites, and interprofessional relationships, the IMS report delivers a snapshot of current social media engagement. Among the metrics:


~Overall use of social networking sites grew from 8% of all adults online in 2005 to 67% in late 2012 and up to 72% of U.S. adults online in May 2013.
~In making clinical decisions, physicians spend twice as much time using online resources compared to print.
~Physicians spend an average of 3 hours a week watching online videos for professional purposes, citing their top 3 as Medscape and YouTube, followed by videos on pharmaceutical company websites.
Wikipedia's Reach

In an analysis of page visits of 5236 English-language Wikipedia pages over the last 2 years, IMS Health found that rarer diseases tended to attract more clicks than did more common ones. In the last 12 months, the top 5 were tuberculosis (4.2 million visits), Crohn's disease (4.1 million) pneumonia (3.9 million), multiple sclerosis (3.8 million), and diabetes (3.4 million).

"Rarer diseases often have fewer available information sources and are often less well understood by the average patient and clinician than common conditions, hence the greater need for external sources of communication," the IMS report notes.

Dr. Fleming told Medscape Medical News that he does use Wikipedia, but not as a primary source of medical information. He checks it for historical or social information, and also sometimes uses references from medical entries.

He also uses Google and Google Scholar, as well as physician-targeted sources such as UpToDate , Epocrates , and ACP Smart Medicine . "You get multiple sources when you do a search. I don't think that's necessarily a bad thing. Any information we get, whether Wikipedia or any healthcare sites or blogs, have to be put in the context of a balanced view."

Dr. Fleming added, "Before we share any information with our patients, we need to feel comfortable that the source is accurate and the information is evidence-based, regardless of where it comes from."

But patients do seem to be relying on Wikipedia to a great extent. By looking at seasonal conditions such as pneumonia and insomnia (more common in winter months), the IMS report correlates spikes in illness with Wikipedia page views, noting that the lag times differ by age: Younger patients tend to research a treatment before starting it, whereas those aged 50 years and older typically start treatment first, then search for information about it.

An analysis of pages for Wikipedia articles on 5 health conditions — diabetes, multiple sclerosis, rheumatoid arthritis, breast cancer, and prostate cancer — showed that the content or meaning of the information in the articles had been changed an average of 16 to 46 times per month since they had been created. The last 100 changes for the 5 articles — most of them major changes — had occurred in the last 5 to 12 months.

Indeed, another of the report's recommendations was: "HCPs have a strong vested interest in supporting the updating and maintenance of medical information utilized by patients online, including Wikipedia."

Dr. Fleming agrees. "I think physicians have always had a responsibility to society to ensure accuracy and cogency of information that goes out to the public. That includes Wikipedia, but that's just one part. We need to be participatory."

Internet-empowered Patients

Dr. Fleming takes issue with the wording of a third IMS call to action for HCPs: "The rise of the empowered patient may threaten the previous stature of the physician as the sole decision maker, but empowered patients make the decisions which they feel are right for them. This has important implications for how HCPs view such patients and engage with them."


He said, "I think it's quite the opposite. The good physician is going to attempt to empower their patients by giving them information. That's what informed consent is all about. That's what patient-centered, shared decision-making is about."

For sure, the Internet and social media have made discussions with patients more "complex and challenging because so much of the information is wrong or confusing and is taken out of context…and we have to correct the mistakes. But on the other hand, it's encouraging discussion with the patient and families."

The notion of furthering discussion is included in the IMS report's fourth recommendation for HCPs regarding social media: "HCPs can learn from patients engaging in social media about their conditions and the realities of living with them. They can also pass on their findings to other patients and encourage them to seek out online support communities. Groups of providers can utilize social media to improve the quality of their customer service, gain feedback on new initiatives, and crowd-source ideas for improvements. A growing segment of patients are likely to appreciate this and may demonstrate increased loyalty."

That's the direction medicine has been going, according to Dr. Fleming, "Over the last 40-50 years, the rise of autonomy has put the patient more central to the kinds of communication that occurs. It's not a one-sided discussion….It's a discussion of what options we need to consider…. All of the professional organizations are embracing the notion of communicating effectively."

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