Posts Tagged ‘linkedin’

PubMed Health: I don’t know who’s on third

Tuesday, May 10th, 2011

As promised in the PubMed Health series (Who’s on first? What’s on second?), I still haven’t seen an official announcement but something caught my eye recently that is noteworthy and appreciated: a connection to MedlinePlus on the PubMed Health topic page!

Below is what the link to MedlinePlus information about diabetes looks like in the right sidebar on the PubMed Health Diabetes page:

Something else also caught my eye that is noteworthy and I want to know more about it – comparative effectiveness results explained as “Evaluating your options: Multi-study review of the strengths and weaknesses of various treatment options”

Here’s how it looks on the same PubMed Health Diabetes page, just below the MedlinePlus link:

Here’s the page for the second comparative effectiveness result listed (click to enlarge image)

 

I don’t see PubMed Health listed among the topics that will be presented at the NLM Theater during the Medical Library Association meeting in Minneapolis, but do see Comparative Effectiveness Research: Everything You Wanted To Know But Were Afraid to Ask.

I’m not afraid, and I’m taking a look at my schedule to make sure I’m there asking about this at some point!

I’ll likely share what I find out in a post here after MLA as I will be an official MLA 2011 blogger. I will post a summary post here with links to all I’ve written over there later too. Please do stop me in the halls and say hi if you’re at MLA! I’ll be the somewhat tall (5’10″ without heels) one looking a little bit dazed and confused, this is only my second full MLA experience.

Health Literacy and Twitter Synergy: #healthlit

Friday, October 8th, 2010

On October 4th, the Twitter accounts for the Centers for Disease Control and Prevention social media (@CDC_eHealth) and healthfinder.gov (@healthfinder) proposed a chat on October 7th with a hashtag of #healthlit to discuss the National Action Plan to Improve Health Literacy developed by the Department of Health & Human Services (HHS).

What happened on Twitter during that hour still blows my mind away 20 hours later as I’m writing this.

I and quite a few librarians, library-related folks & library Twitter accounts (medical and others) were there along with federal, state &  local/county-level agencies with health information interests, hospitals, regular media, healthcare social media strategists, health information vendors, health educators, public health educators, and countless others.

We were probably supposed to follow a semi-structured question/discussion format centering on the health literacy action plan that is gently cattle prodded moderated as most scheduled Twitter chats are.

That’s not quite what happened.

The energetic passion that resulted from everyone seeking to connect, share and learn about each other’s strategies and approaches for health literacy were contagious to the point of being an instant online pandemic. It was chaotic. It was overwhelming. It was the first time I saw the MedlinePlus Twitter account (@medlineplus4you) be quite engaged in a hashtag chat including direct replies to others… putting the social in a National Library of Medicine social media channel.

It was one of the most unexpected and amazing community flashmob experiences I’ve been a part of on Twitter. I was just one small voice contributing the Medical Library Association’s and the National Network of Libraries of Medicines’ health literacy resources and supporting the discussion about MedlinePlus, NIHSeniorhealth and the Information RX program.

Other health literacy resources I managed to gulp from the firehose (besides the National Action Plan to Improve Health Literacy) were

  1. Health Literacy Online (fantastic ODPHP resource covering how to write & design easy-to-read websites)
  2. The Plain Language Medical Dictionary Widget (University of Michigan)
  3. Clear Communication: An NIH Health Literacy Initiative (National Institutes of Health)
  4. Talk To Your Doctor (part of NIH Clear Communication)
  5. Talking With Your Doctor (National Institute on Aging)
  6. Improving Health Literacy for Older Adults (PDF, CDC)
  7. Improving Communication with Older Patients (AAFP)
  8. Health Literacy for Public Health Professionals (online health tutorial, CDC)
  9. Health Information for All by 2015 (HIFA2015)
  10. Health Literacy Studies (Harvard)
  11. MEDLINE/PubMed Search and Health Literacy Information Resources (NLM)

For me, the most exciting thing was having people from so many perspectives coming together with so much enthusiasm to discuss health literacy. Not a single one of us (or the agencies we work for) has The Only Right Answer: if we did, everyone would already understand medical information and there wouldn’t be a national action plan to improve it.

With everyone continuing to come together and all perspectives being heard, that is very likely to change. I can’t even begin to cover the multiple threads addressing accessibility, jargon, acronyms, disparities, specialized health needs (rural, seniors, etc) that were part of the conversation beyond resource sharing. There is a WTHashtag archive but it’s very hard to follow these threads there. I am excited about additional discussions and future collaboration opportunities though and will keep writing as I learn more about how to get involved.

Social Media in Health & Medicine (and Reference? Emergencies?)

Thursday, August 12th, 2010

It was a pleasure to participate in Highlight Health‘s hosting of Social Media in Health and Medicine, Medlibs Round 2.7. Thank you for an excellent compilation and presentation, Walter!

I’ve been talking about social media a lot here recently, I have just a few more updates related to social media then I’ll move on to other subjects.

Twitter as Government Agency Reference Source

I am encouraged by the step the Substance Abuse and Mental Health Services Administration (SAMHSA) has taken by announcing they will monitor a hashtag, #findsamhsa, to assist people who are seeking information from their numerous helpful pamphlets and online resources. So far I haven’t seen where people have used the hashtag except in retweets, but the agency’s willingness to try this way to engage in assisting health information seekers is commendable. I’d suggest they include a blurb about it on their social media page though so others will know about this service after this scrolls off the immediate horizon from their Twitter posts. We already know how I feel about #pubmed so I won’t rehash that hashtag.

Increased Social Media Use in Emergencies – 74% of Those Posting Expect Help in 1 Hour

Everyone needs to review the report of a Red Cross survey released this week about the usage of social media in emergencies. Of course, the first step should always be to call your emergency services number (911 in the United States) but what if the phone lines are down? 1 in 5 of the 1,058 adult participants would try to get help via email, websites or social media.

What was particularly notable are the expectations people have when they use social media in this way, bold emphasis mine

Web users also have clear expectations about how first responders should be answering their requests. The survey showed that 69 percent said that emergency responders should be monitoring social media sites in order to quickly send help—and nearly half believe a response agency is probably already responding to any urgent request they might see.

And the survey respondents expected quick response to an online appeal for help—74 percent expected help to come less than an hour after their tweet or Facebook post.

and

More web users say they get their emergency information from social media than from a NOAA weather radio, government website or emergency text message system. One in five social media users also report posting eyewitness accounts of emergency events to their accounts.

The National Weather Service has taken a step in this direction by encouraging the use of the #wxreport hashtag for severe weather events… but the reality is you can’t preassign a hashtag to be used in an emergency. People will inherently create their own individual ones, the local social media community will reach a hive mind consensus on what it is, and onward it goes. From my perspective this is why agency social media channels need to build relationships so they are aware of who their audience is and what they are discussing, so in an emergency the agency will know what specific hashtag will be most useful to convey information to those who need it.

iPad + Goodreader = Scary security risk

Saturday, June 26th, 2010

It’s not often I blog at 8am on a Saturday but this alert about Goodreader on the iPad from Jason Griffey’s discovery at the American Library Association conference is too scary to let pass by.

By default, Goodreader doesn’t require authentication or any warning to connect via Bonjour, and it allows you to browse AND DOWNLOAD any files that are so shared. Sitting in the Conference Center lobby, I was able to connect to two different iPads, view and grab files arbitrarilly, and push files TO the iPads as well.

Thinking about the implications of iPads that may contain cached sensitive medical information or documents with login or other data outside a secure hospital system (how many of us catch up on a little bit of work while at Starbucks?) setting  freaks me out even more. What opportunities are there for medical librarians, hospital IT departments and med students/residents/clinicans to easily share what devices they are using and be aware of the latest security risks and how to resolve them?

Of Impact, Information and Ideas

Wednesday, June 16th, 2010

ePatient Dave deBronkart, me, and Susannah Fox (Pew Internet)

I learned from previous experience that the wireless card wouldn’t work in the audience area of the room the E-Patient Symposium was held in at the Medical Library Association meeting, which I covered in two parts as The View From The Trenches and Personal Health Records (PHRs) in the official conference blog.

Via Twitter you often tend to make professional friends online first, then meet face to face as you huddle around outlets at conferences. This was the case for me with ePatient Dave who was the first one back there. He didn’t recognize me initially when I showed up with my 6-outlet surge protector to share (a great way to make instant conference friends).

Suddenly his entire face lit up with unmistakably genuine joy.

“It’s YOU!” and he quickly whipped out his cell phone camera.

“You have got to be kidding me, Dave. This “YOU!” is so the other way around,” I silently thought to myself.

Throughout the rest of the symposium we listened attentively to the speakers, chatted, and he graciously introduced me to Regina Holliday (the “is my savior in the cloud?’ line from her poem and paintings haunt me still) and Susannah Fox.

What amazing, dynamic people who I continue to connect and share ideas with about healthcare information via Twitter. It’s not about the channel though; whatever method of communication opens up in the future, I’m pretty sure we’ll all be there connecting through it.

Are librarian bloggers not radical enough, as Connie Crosby hypothesizes, due to a lack of blog comments? Is blogging dead? No.

What about Abigail’s point in her Hedgehog Librarian blog?

We may know we’re doing cool things but we’re insular and primarily talk to ourselves and about ourselves. We have our own conferences, our own professional networks, and the navel gazing can become exhausting.

Yes.

What are you doing that leads to the “YOU!” moments, especially from those outside the library field who are among our most passionate advocates?

I would be remiss in not honoring a “YOU!” colleague who was taken much too soon from us last week: Cynthia Kahn. She was not only an outstanding librarian but her work in diabetes advocacy, especially with youth in Adventures for the Cure, was phenomenal and she will be dearly missed. A quick search of her Twitter account name during the time of the shocking news of her sudden death identifed another Twitter community besides medical librarians who were grieving the same loss:

What are you doing to identify and bridge these connections with others?

The relationships and impact of shared information and ideas is what matters. It’s not about specific communication channels or carefully guarded power structures. We have so many ways available to make it easier than ever to break down information silos. This is a vision for geolocation. What similar vision do we have for healthcare information?

One and the same? Consumer health, E-patients, Patient education

Wednesday, March 31st, 2010

I have been thinking along the same lines as Luke Rosenberger (who led an excellent Librarians and ePatients unconference session)  in wondering if the materials commonly referred to as consumer health or patient education materials truly meet the needs of e-patients, with a twist.

In the first post Luke explains

For example, librarians (particularly health science librarians) tend to speak of a certain subset of health information as “consumer health information” — material created with the “consumer” as its intended audience — as opposed to material intended for use by clinicians or researchers.

to which I would add an emphasis on the use of clear language terminology that also defines and/or explains whatever usage of medical terminology is within the material. When I was diagnosed with Lofgren’s Syndrome (pre-Google and a decade before librarianship was on my horizon) I was outraged by one specific use of medical terminology. “It’s mostly a self-limiting disease” is not the phrase to use with someone with extreme fatigue and in pain who immediately interpreted that along the same lines of self-limiting beliefs. The specialist certainly never intended to say I was standing in the way of my own healing from a disease but that’s exactly what I heard!

Luke continues,

ePatients, it seems to me, do not conceive of themselves as “consumers” largely because of the one-way transaction implicit in that term.  ePatients do not “consume” healthcare or health information; they “engage” with it, they “participate” in it, they “co-create” it.  And in doing so, they want to participate in understanding their healthcare using the very same research, guidelines and other material that informs the rest of their healthcare team.

This does seem to be a clear distinction with intent and purpose regarding health information and healthcare. Traditionally, patients are often given information from a health care provider to take home (usually patient education handouts) that can then serve as launching points to further research by those who understand the handout (not always a given with the challenges of cultural and health literacy).

Are e-Patients the 21st century face of consumer health? A specialized subset? What is meant by the term e-Patient anyway? The definition of an e-patient is one who is “equipped, enabled, empowered and engaged in health and health care decisions” according to e-patients.net founder Tom Ferguson.  This differs from Pew Internet’s usage of the term e-patient to encompass everyone using the internet to look for health information in their 2008 report.

Can we assume that because people are able to and are searching online for health information that they are also empowered and engaged in health care decisions? I see that to be a very far stretch, especially given the questions raised about Ask Me 3 not being found effective and another study showing that unless patients are highly involved in their healthcare they don’t ask questions as they’re sitting there half-naked.

What do we make of the fact that, according to a study I don’t have access to in order to read it myself EDIT:  I shouldn’t blog at night after a long week at work, mistype the journal name, then have a friendly librarian (thanks Jennifer!) point out it’s OPEN ACCESS (major duh.. or April Fools? ;) when people are given complete information about options they make… poor choices slanted towards short term benefits instead of long term goals?

That right there is why the plethora of health information on the internet, both good and bad, can never replace qualified personal medical advice.

Don’t Ask Me 3? Challenges of Health Literacy

Tuesday, March 9th, 2010

As a medical librarian I enthusiastically encourage more engaged, effective and clear communication between patients and their healthcare providers.

I teach consumer health classes that include mention of  the Ask Me 3 (AM3) program of the National Patient Safety Foundation as part of health literacy education efforts. The program emphasizes focused patient questions of healthcare providers about 1) What is my main problem? 2) What do I need to do? and 3) Why is it important for me to do this? A description according to the healthcare provider page of Ask Me 3 includes

… a quick, effective tool designed to improve health communication between patients and providers. Through patient and provider education materials developed by leading health literacy experts Ask Me 3 promotes three simple but essential questions that patients should ask their providers in every health care interaction.

The problem? Preliminary research including the randomization of 10 practices receiving Ask Me 3 intervention and 10 serving as a control group has shown the program is not effective (with a possible catch).

Overall, they found that among 829 patients across the 20 practices, there were no clear benefits from the AM3 program. Ninety-two percent of patients in both the intervention and control groups asked at least one of the three questions. And patients in both groups averaged six to seven questions of any kind per visit. The two groups also showed little difference when it came to treatment compliance, based on interviews done within three weeks of their visit.

The research team, which will publish their results in the March/April 2010 Annals of Family Medicine, note that

…the study group had fairly strong scores on a questionnaire of “health literacy”

and research team leader Dr. James M. Galliher of the American Academy of Family Physicians National Research Network emailed Reuters with

We believe that programs like AM3 should be systematically implemented and studied across time with patients whose health literacy skills are challenged

The problem is how to accurately tell whose health literacy skills are challenged if across-the-board measures like AM3 aren’t the right strategy. Should new patients take a health literacy questionnaire in addition to the rest of the paperwork they usually have with intake? Read an ice cream label ? Have healthcare providers engage in profiling despite the ‘my patients are well educated enough to understand’ myth? A Public Health Literacy blog entry elaborates on the slippery subtext slope of that last possibility better than I ever could.

It is discouraging news if a tool developed by ‘leading health literacy experts’ didn’t lead to at least some type of positive measurable difference regardless of the study population. The March/April edition isn’t available to me online yet but I look forward to reading this article for more detailed information.