Friday, February 21, 2014

BUZZ: Wiki-What?

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

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."

Wednesday, February 19, 2014

Wordless Wednesday: Powerful!

Have you EVER watched a video in which there were either no words uttered... or no words that you could understand; yet it said SO very much?

It's similar to the lives of these little ones with hydranencephaly... they say so little, often nothing at all, yet they radiate love, joy, strength, and show such great power.

I am sharing this AMAZING video as a wordless Wednesday post because I've watched it several times (just today); and to me it is "wordless" since my Spanish is incredibly rusty (to say the least).

I watched it first with my daughter, Brayden's sister and his biggest fan... I'll warn you that we were both in hard tears by the end.

Grab a box of tissues.. you'll need them!

I've since discovered that the video is "not supposed to be online yet" due to it's apparent participation in some sort of film festival... but, once online it's always online ;) Hopefully the link works long enough that you all can watch the power of this short video. Please let me know if it is not accessible and I will change the embedded link as soon as I'm able!

Tuesday, February 18, 2014

Tried & True Tuesday: Nix Unnecessary Prenatal Testing

This post could teeter on the edge of controversial for some, so I am just not going to delve in to the specifics... not today anyways! This post will be semi-short & relatively sweet.

I was thrilled to learn this week that the Society for Maternal-Fetal Medicine had released its list of the top 5 common practice procedures that may not be necessary, with this amazing tidbit at number 3:

"Don't offer noninvasive prenatal testing (NIPT) to low-risk patients or make irreversible decisions based on the results of this screening test." Utility of NIPT remains unclear for low-risk pregnancies."

They further upped the anti by offering clinicians recommendations on what not to do in certain situations.

My recommendations:

  1. don't pretend you can see an unborn child's future in some crystal ball, then tell parents that they have no future
  2. don't tell a family that there is "no hope" for their child based upon a diagnosis that has a definition written too many years ago with no additional information or research to back the prognosis; continued research elicits medical advancements faster than most textbooks can keep up with
  3. don't encourage a family to terminate a life based upon a test that does NOT have 100% accuracy rate; since no test is fail-safe, let the family decide the life a child should or should not have... but only AFTER you have given them every ounce of information possible and encouraged them to seek out information on their own!! Since you can never possess every ounce of information, sounds like termination should be left out of the equation all together. More often than not, families terminate with the ideal that this is not only the BEST option, but the only option
  4. don't let a piece of paper (aka your medical degree) be the end of your education, nor let the knowledge you already possess feed your pride... it's absolutely ok to admit you do not have all of the answers and patients would rather see you shrug your shoulders then feed them a long line of BS; we appreciate your thinking out of the box and would love for you to tell us that you will help us do more research
If you're interested in reading the other REAL recommendations made within this release, read the full article HERE

Sunday, February 9, 2014

Feeding Tube Awareness Week Kick-off

Today marks the start of an immensely important awareness endeavor Feeding Tube Awareness Week is February 9-15, 2014. Always the second week of February, so as to coincide with Valentines Day. Several of our bee-buddies are thriving with a little extra help from a feeding tube... despite the misconception that this is an extreme medical intervention that prolongs the inevitable! 

Stay tuned this week while several organizations join in recognition of this week of awareness...

Global Hydranencephaly Foundation will be working to raise awareness of the benefits, challenges, and also addressing the misconceptions that surround the idea of a feeding tube! You can learn more at the website for Feeding Tube Awareness Week® from our friends at Feeding Tube Awareness Foundation, Incorporated; as well as follow us on Facebook, Twitter, and on our YouTube channel!

"The theme for 2014 is "Nothing Can Hold Us Back." It will highlight the resilience in overcoming challenges. Tube feeding doesn't have to stop you from living life. Nutritional support can make life possible. We will ask participants to share what they love to do and positive stories about how tube feeding works into their lives, not controls it. 

About Feeding Tube Awareness Week® 
In 2011, Feeding Tube Awareness launched the first annual Feeding Tube Awareness Week®. The mission of Awareness Week is to promote the positive benefits of feeding tubes as a life saving medical intervention. The week also serves to educate the broader public about the medical reasons that children are tube fed, the challenges that tube feeding families face and day-to-day life with a tube fed child. Feeding Tube Awareness Week connects tube feeding families. Seeing how many other families are going through similar things makes people feel less alone.  

The second week in February was selected because of it's proximity to Valentine's Day since we love our tubies.It can be challenging to have a lot of negativity surrounding the medical device that is keeping your child alive. This week, in particular, is an opportunity to embrace the positives and be thankful that it helps our children to live, grow and thrive. 

Each year, we encourage parents and caregivers to participate in the week by posting in social media, blogging, emailing or making videos about the different topics areas for the week. A number of parents have contacted local media and gotten their story heard. A number of parents, siblings and tube feeders gave presentations at their schools. (See the sidebar for more information)

Thousands have participated in Feeding Tube Awareness Week® and it continues to grow each year. In 2013, we reached more than 120,000 people with content just from the Feeding Tube Awareness Facebook page. Millions more were reached through TV, newspapers, online media, websites, blogs, facebook posts, tweets and outreach from companies and organizations."