Thursday, August 28, 2008

Oops, Pew did it again: 'Folklore and quackery' as Internet healthcare indicator?

First, a thank you to David Rothman for the shoutout about my post yesterday regarding the Pew Internet E-Patient report-as-perspective column. For those joining me as a result of that, welcome! This entry is a bit more about why I began this blog a little over 4 months ago. For those who have been with me a while, I'm not exactly still keeping "quiet and observ[ing] for now without expounding in public," am I?

The first glance at the RSS feed alerting me of yet another Pew Internet report released yesterday brought my immediate skepticism. The title of Whither the Internet? told me nothing about its contents although it's listed in the E-Gov and E-Policy section, and even worse it didn't match the webpage's title element of IGF Survey (which also told me nothing). This time I clicked and looked straight for the icon and it was another Memo.

However, unlike the E-Patient memo, this one was reporting the results of a survey distributed at the Internet Governance Forum in Rio de Janeiro last November regarding "their views of the role of the internet around the world and how governments and other regulators should structure policy about the internet." Although the response rate was only 15% it gave specific questions, answers and figures for this individual survey. Reports (memos?) were presented as a 6 page summary and a 42 page document.

Upon first glance this was interesting but had nothing to do with health information and the internet. Then I caught this on page 3 of the 42-pager (bold emphasis mine):

Most (60%) said they believe global Internet access improves the economy – through the creation of more and better jobs – and they also agreed with the statement that Internet access improves healthcare (74%).

74%? Wow! What's the basis behind this? I found it on page 17:

Along with

This finding suggests the global legitimacy of Internet content.
Perhaps it's been a long week and I'm missing something, but I do not see how this asks "Does Internet access improve healthcare?" in the midst of a question that is confusing and biased to me when English is my first language. Survey participants included attendees from 65 countries, does the concept of 'folklore and quackery' even translate to all other cultures?

What troubles me the most about these two recent Pew Internet report/memos is that for years librarians have told both students and professors to regard them as a citable source of credible research information. To now add an asterisk depending on report or memo format (a quick scan of reports listed as Reports seems to still hit the citation mark) when the difference between the two is not explained anywhere that I can find on Pew's site is not acceptable. Maybe we should only recommend the reports Pew issues press releases for?

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Wednesday, August 27, 2008

Ooh it's another Pew Report on electronic health!.. or is it?

I first learned about Pew Internet reports in 2005 during the last evening degree class for my BA at the University of Washington. It was also from this class that a 2nd degree connection of the professor's led me exactly to where I am in medical librarianship today. Yes, I have kept in touch with my professor and thanked her and her 1st degree connection for this!

Every time I see a notification from Pew in my RSS feeds I eagerly check to see what it's about, and am always thrilled each time their research intersects with health information. The one released yesterday is The Engaged E-Patient Population. Everyone, including me, will cite the easy cut-and-paste blurb:

78% of home broadband users look online for health information, compared with 70% of home dial-up users. Home broadband users are twice as likely as home dial-up users to do health research on a typical day -- 12% vs. 6%.

High-speed, always-on connections enable frequent and in-depth information searches, which is particularly attractive if something important is at stake.

However, by digging a bit deeper we (disappointingly) find this isn't nearly as comprehensive a report as the 22-page Online Health Search 2006. It confusingly blends political campaigning data in with the health information data, such as this paragraph immediately following one about people sharing advice on how to communicate with health care providers

Along with all this engagement, however, is an understanding that the internet is not a cure-all. Some 60% of internet users agree with the following statement: "The internet is full of misinformation and propaganda that too many voters believe is accurate."
From what I have seen during my limited foray in consumer health information education thus far, I'm betting that nowhere near 60% of internet users would have similar agreement about the existance of health misinformation online nor understanding about the difference between pharmaceutical/for-profit vs. unbiased/non-profit health websites.

The report also does not give us the questions used for their survey(s). Without these, it is difficult to understand and impossible to verify the results stated... what does Pew mean by "in-depth information searches"? Searching MedlinePlus (kudos for being one of the best government websites!), and for breast cancer information? Clicking on the second page of Google search results?

I was increasingly confused by this report until I saw a note at the bottom stating "This column originally appeared on iHealthBeat" Wait, what? A column? A report? Which is this? It is then that I noticed that while this is presented as a Health report with "This latest Pew Internet Project survey confirms that.." and 'View PDF of Report' below the blurb, there is an icon that indicates this 'report' is actually a 'Memo' although no explanation is given to differentiate the two.

Searching iHealthBeat led to their verbatim August 12th Perspectives column. iHealthBeat is a daily publication for the California HealthCare Foundation.

As a librarian I am seriously disappointed by Pew; this is not a Health report but a brief summary of at least 2 unidentified surveys written as a perspective column for a health organization. There is certainly nothing wrong in Pew doing so, but presenting and labeling a perspective column in the same manner as their reports could be considered a form of internet misinformation itself. I look forward to much clearer definitions about their report/memo information in the future!

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Tuesday, August 19, 2008

Misfire: Library Instruction Workshop notes

On Monday I attended a conference with my new laptop intending to test out Google Docs for notes because I don't feel like activating Office 2007 on it quite yet, if ever. We had to switch from a classroom to a computer lab midway through the conference, and I was suddenly delighted with my decision: no having to connect my laptop (don't you hate juggling limited desk space with an existing computer?) to seamlessly continue with my notes!

The conference was entitled Putting Assessment into Practice: A Library Instruction Workshop that was very useful to me for my evaluation role at work. While my assessment focus (without the hatchets) is not exactly along the lines of the academic librarians that made up the majority of the conference, it was refreshing to voice some of what goes on in my brain and find that no one else has easy answers or solutions to what I'm running up against either. I received some terrific ideas regarding concise pre-assessment measures as well as evaluation factors midway through a class that I think (hope) will lead to better online instruction for the classes I teach.

While I was formatting my Google Docs notes to post as a website, I accidentally misfired them straight to my blog and it published without title, proper formatting or warning. Oops. I removed them immediately and I don't think it hit RSS feeds. If it did, I apologize for that bit of randomness. If you're interested in library assessment, I encourage you to read my notes the way they are intended and check out the resources. I'm probably not going to flesh them out more than the outline but am happy to elaborate if you have questions. Kudos to the planning team for a great session!

Monday, August 18, 2008

When a diagnosis isn't: Insurance (or kidney) roulette

8/19/08 edit: This was also picked up by the Schwitzer health news blog today.

I have been somewhat disturbed by the Sunday headline article regarding highly sophisticated new drugs and how anyone can afford them when health insurance agencies are increasingly reluctant to cover the bill.

In 2007, the tab for bioengineered and "specialty" drugs was nearly $59 billion. Industry analysts predict it will reach $98 billion by 2011.

"The reality is that this is where the pharmaceutical industry is focusing their research," says Jim Carlson, Group Health Cooperative's pharmacy director.

The pharmaceutical industry long has been accused of price gouging and producing "new" drugs that aren't better than cheaper ones already on the market, and it has been criticized for its direct-to-patient advertising.

In response, the industry points to long periods of expensive research and development that often end without new products. Healthy profits attract investors to fund new research, it argues, and advertising helps patients make informed choices.

Informed choices? I don't see pharmaceutical ads as an educational tool for choice (and would question anyone who would take them as such given their inherent bias) but I digress.

Escalating cost-sharing tiers for drugs originally were developed to encourage patients to use lower-cost generics or "therapeutically equivalent" brands, noted Claxton, of the Healthcare Marketplace Project.

But, with the development of costly bioengineered drugs, insurers may have found a new use for the tier system.

When patients have no less-expensive choice, Avalere's Mendelson argues, cost tiers simply punish patients instead of encouraging thrifty, healthy behavior.

"These tiering policies don't accomplish that. They just stick it to the chronically ill."

Now for a little local history lesson about how the chronically ill were once dealt with and a compelling thought for the present and future:

Dr. Peter McGough, former president of the Washington State Medical Association, and now chief medical officer for UW Medicine's neighborhood clinics, recalls the time decades ago in Seattle when kidney-dialysis treatment was so scarce and expensive, a secret committee was formed to decide which patients got treatment — and which died.

As was true then, McGough says, these super-expensive new drugs "are pushing at the question of limited resources." Decisions can't simply be left to insurers and employers, he said, because they require a broad social policy about what's "sustainable, ethical and equitable."

I have a friend with multiple sclerosis who has tried numerous MS drugs; they do not adequately manage her symptoms. A relatively new drug for fibromyalgia does for some reason. Does her insurance cover the fibromyalgia drug? No: it only would if 729.1 appeared somewhere in her records (the ICD-9, or diagnostic code, for fibromyalgia as "Other disorders of soft tissues, Myalgia and myositis, unspecified.").

Her doctor promptly gave her that diagnostic code for the purpose of satisfying the insurance agency so her prescription would be covered by them, although she does not really have fibromyalgia.

I'm pretty sure her story is far from unique. If insurance agencies make it difficult to have physicians treat patients with the best options for their personal health without falsifying medical records or worrying about what tier the drug that works for them is on, what purpose does this serve? One case of an intentional false diagnosis may not sound like much, but it is still reported down the line and summarized in demographics and various reports regarding disease in communities. What is a true disease incidence and what is an intentional false positive? What are the ethical implications? How could this affect disease research studies?

I wish I had the answers, let alone any realistic thoughts for solutions.

Monday, August 11, 2008

EMRs in plain English

I had no idea that beginning last month there are now weekly MedlinePlus podcasts, let alone a MedlinePlus topic covering electronic medical records for consumers. Maybe I missed it in the data flood during our European vacation?

I particularly appreciate the instant turnaround on the transcript for today's podcast about electronic medical records. Thank you, Journal of the Medical Library Association (JMLA) blog!

As a reminder for those in the Pacific Northwest (I wouldn't recommend non-natives coming to visit in October for this, it's rather cool and soggy by then), registration is open for the Pacific Northwest Chapter of the Medical Library Association (PNC/MLA) Continuing Education Update featuring an electronic health record forum that I will definitely blog about.

Wednesday, August 6, 2008

Should we serve bagels or croissants? An irreverent look at library assessment

Assessment and evaluation of programs is a major component of my rather non-traditional librarian job of a whopping 3 months. I can't say I'm any good at it yet but I'm optimistic, relatively good at picking up things quickly and running with them, and surrounded by phenomenal resources on an everyday basis.

At the same time, I think every one of you can relate to this...

The conference I crashed on Monday (sitting on the floor in the back of the room without a conference badge, let alone a single ribbon from it) was the Library Assessment Conference. We had kinda-but-not-really been invited to attend sessions of interest to us as long as we didn't eat the food or attend their social events. Fair enough. I scanned the schedule to see what was possibly useful to me from my job perspective and found something I couldn't miss:

Plenary Session I: The Most Important Challenge for Library Assessment
Three visionary library leaders each present what they see as the most important challenge for library assessment in the future. The session promises to be provocative and stimulating, but never boring.

I'm not sure exactly what I was expecting with a buildup like that, but I can assure you it wasn't along the lines of the provocative future Andrew Zolli had at MLA 08 in Chicago.

First up, with the best-designed Powerpoint for clarity in a large room, was Susan Gibbons, Vice Provost of the River Campus Libraries at the University of Rochester. She challenged our field's obsession for focus on quantitative data (suggesting maybe The Count from Sesame Street was partially to blame) and instead to consider what are we counting, why, and what the numbers actually tell us. Reference queries are down: is the Internet to blame? On the surface it's easy to say yes, but their deeper look found other barriers. Users did not want to leave their spots at the popular library computers (they did another study that found students walking 2-3 miles a day, thus why they didn't always want to haul laptops with them) to ask a reference librarian a question. They had students photograph what they always carried with them; cell phones appeared in every picture, yet both their own & 41% of the Association of Research Library (ARL) websites didn't have a phone number on the front page.

Next up was Rick Luce, with an overwhelmingly detailed dark blue background/white text with yellow headers Powerpoint I couldn't read most of the time, who is Vice Provost and Director of Libraries at Emory University. He whipped through his presentation with amazing speed about the $100 million investment approved for his aggressive strategic plan that wasn't based on ARL statistics and emphasized staff understanding for the need for systems-wide improvement. He suggested studying the criteria for the Malcom Baldridge National Quality Award winners, to get beyond assessment as a "happiness meter" (level 1) or just asking what's important (level 2) and considering 'How do we rate against the best in the industry?" (level 3). He ended with a charge of avoiding measures not focusing on strategy, a lack of accountability, a lack of discipline, and an emphasis on no action without a plan, and no plan without data. Whew!

Last but not least was Betsy Wilson, with another blue background/white text/yellow headers Powerpoint but she used minimal text with clear pictures for a better effect, Dean of Libraries at the University of Washington. She focused on 'accelerating relevance', of looking to the past to think about the future with a clear vision in mind. What got everyone's fingers tapping on laptops or scrawling on notepads was when she asked us to consider something I'll highlight and get back to later:

What will the scholar of 2050 want us to preserve? Blogs? Mashups? Wikis? How can we stem the data deluge? How can we make quality data convenient?

She continued with two main points of how assessment can help listen, look, connect & replenish; and that we are not the first to wrestle with the relevance of the library of the future. President Suzzallo at the University of Washington was canned by the Governor over the campus library's vision and construction, but then the voters sacked the Governor in the 1932 election. (source)

My brain merged obsession with front page library phone numbers (can you tell from yesterday's post?), level 3 thinking about (perceived) 'best in the industry' (can't you just Google the information and get it?), and what 2050 would want us to keep about today's information torrent.

For the last one I wasn't thinking along the lines of blogs (plenty of backup opportunities there) but the vast stream of both data and ephemera in various forums of social networking and instant messaging. What is useful for 2050 about now? Is it pointless to write a traditional journal article about these media when it can and will morph into something else within 6 months & have a shorter half life still in the future? Or is this part of what we need to document about the data flow in society now?

These communication methods are a part of everyday life for most students and what many of our library users are used to while many librarians are not. I believe in the use of wisely applied assessment measures, but not in using them as a crutch to keep from trying out new things without reams of data first and/or fear of the unknown. Get the mammoth when it's in sight! If we spend much time looking for our ribbons instead of encouraging users to use their cell phones to call us or efficiently respond to their Meebo widget queries, they'll never even know about the fine quality cheese to go with the bagels and croissants.

Tuesday, August 5, 2008

Blogger vs. Twitter account bans: Observations in communication clarity and confusion

I know I promised a followup to our quarantine story to be posted last week, but an unexpected trip to my homeland for a funeral in addition to a research roadblock (I'm not satisfied that there truly is nothing & am still digging for additional sources before calling it quits) have caused a delay that I am sorry about.

There. I admitted that I didn't deliver on a promise to you as my readers, explained why and apologized. Not such a big deal, right?

On Friday, August 1st, Blogger publicly admitted and apologized for blocking some legitimate users' accounts as spam. On Saturday (not a business day) August 2nd, they publicly apologized again, identified the source of the problem and the solutions in place to both remedy and prevent it from occurring again. I particularly like this excerpt:

At Blogger, we strongly believe that you own and should control your posts and other data. We understand that you trust us to store and serve your blog, and incidents like this one are a betrayal of that trust.

Now, contrast this to a spam-blocking account incident on Twitter that also happened sometime on Friday, August 1st. At least 8 non-spam Twitter accounts were deleted and banned with no notice to the users, including Connie Crosby and P.F. Anderson who are friends of mine (I've met Connie in person and just missed Patricia due to my limited time at MLA in Chicago).

Eight may not be many accounts, but the fact of the matter it is still some... and a very visible some considering each of these two both followed and had well over 1,200 followers!

Did Twitter publicly admit, apologize for, identify the source of the account problems or the solutions in place to both fix and keep it from happening again?

No. On Twitter's blog they promoted their iPhone apps and a video August 3rd and 4th, and the Twitter Status only notes problems with their search engine on August 2nd and 4th.

I do not count the Get Satisfaction thread about the account bans as an official Twitter presence because Get Satisfaction is a designated "neutral space to support customers, exchange ideas, and get feedback about their products and services." (source)

While I certainly agree that Twitter will never be the be-all end-all of online communication forums, I have been thinking about the role of data preservation in online discussion formats in part due to a conference plenary I crashed today (a post for Wednesday, honest!) and how much I take health information access for granted (tied with the quarantine experience where I had practically none).

With libraries' focus on emergency preparedness for our users' information needs in a disaster, there are certainly areas for improvement regarding proactive communication with them. Positive steps include openness, such as Blogger's proactive example and the National Network of Libraries of Medicine, South Central Region (NN/LM SCR) posting in listservs and their webpage that they are closed today due to an approaching tropical storm and featuring disaster management database sources on the front page. I am thinking of and wish the area well!

One drawback is that SCR did not specify in the announcement where to call if their member organizations have any urgent disaster-related information needs, which is 1-800-DEV-ROCKS for all NN/LM members. Locating that information required two clicks in from the SCR front page to obtain it from the NN/LM Emergency Preparedness page that also requires prior knowledge of both the fact that there is an emergency number and where to look for it. In a true emergency these steps may be difficult to recall.

More on communication with users and making library information more accessible in both everyday reference situations and emergencies tomorrow with my plenary recap!