Blogging Public Health and Medicine

This is the third breakout session today in the blogging conference.

I'm interested in this session mainly because I'm a scientist by training, working in a translational research lab.  I want to make sure that anything that I publish isn't misconstrued, misinterpreted or taken to have more credence than I actually have.

One of the major issues with blogging public health issues is making sure not to harm anyone's right to privacy for their medical history.  That being said, it has been shown that providing human perspective in blogging has a major impact on how much people are willing to relate and trust you as a writer.  In the area of medically relevant blogging these two extremes have to be balanced.  At this boundery, the UNC public health department released a study that showed that where you get your medically relevent information matters, and personal histories make them more convincing than statistics.  This is hard for me to swallow as a scientist, but it's a pill I'll have to handle.

One thing to be sure you understand while blogging is of course the audience.  One commenter in this session specifically asked what was the education level of people who use science blogs?  what is the true audience?  And most importantly how does that affect the language we as science bloggers use?  As mentioned above, this is a balancing act of knowing your audience as you would want it, and finding the audience that you have when discussing medically relevant information.

Most important to this whole discussion is of course patient rights, and making sure that our readers get the best information possible, while understanding we are not giving them medical advice.  At this point HIPAA was discussed as a way to protect patient information.  As an MD blogging this is a huge issue.  Disclaimers (such as on kevinmd) are a way to get out of this, but this is a huge concern.  Also something to be aware of is that people who receive federal funds for research are also subject to other releases.  While personal stories are some of the most compelling ways to write, one must manage those releases and keeps privacy.

Another issue that was raised was how does journalism for medical and public health news get generated.  One of the major focuses is the actual news cycles.  This reaches a saturation point, however, and you can only write about some topics so much.  Turning the middle of flu season, you do still have to write about other issues.  An example was that from Duke Medical Center the two top issues in the recent months have been the following: a finding that human appendix may have a purpose, and that cancer doctors not as empathetic with their patients as they think they are.  What are people interested in?  High wow factor.  Sex.  Obesity.  As a journalist you must pitch to your editor - and by extension, your audience.

Lastly, when doing medical health blogging one should also be sure to be aware of persons with disabilities and their access of information.  What to do about this? The W3C has plenty of information.  A brief 5 points of high interest are:

• use straight HTML / XHTML... don't use extra stuff
• tag your images - caption them if you can't tag them
• structure your documents so that they are heads
• don't put up proprietary documents - such as pdf's
• this allows people to search and share documents easier
• images makes things much harder to process - keep them limited and simple:
  

Here are some links to some checkers that you can use to help ensure that you're blog isn't going to cause problems for persons with disabilities:

• www.webaim.org - the wave - this program physically shows you were the problems are
• cynthia says - this is through icdri, and is for more advanced users
  

Blogged with Flock

Open Science in Developing Nations

Part 2 of the Science Blogging Conference

Understanding the impact of the reach of the internet, and how people in developing nations are accessing the information out there.  These countries which are developing around the also developing internet are going to be redefining themselves to incorporate these changes with them.  In some countries, the scientists are ranked by the rating of the publications which they produce.  In other countries there are policies in place which mimic the standards of open source projects (e.g. publish early, publish often; rather than waiting for long projects to fully come to fruition).

In these countries, what can be done to improve the access of open access material?  How can we improve the penetration of scientific information?  One of the options is to push people to create as much as possible - if people are not actively creating information on the web, there is going to be little emphasis placed on this.  While the penetrance of the information may not be high, if there is no culture that is being fostered in which this habit is valued, then the internet will not be a particular source of outreach.

What is the effect of the $100 laptop? One issue that is raised is that the major obstacle of this is getting people access to computing.  However this may be irrelevant to the idea of open science, because most places that are actually doing science will have some computational abilities.  While it may be part of the issue, getting the information out to the developing countries - such as subscriptions etc.

Apparently Science and Nature have deals with many developing countries to help increase the penetrance of science.

There definitely appears to be a split in the perspectives of what issues developing nations have with access are different.  Even solar panel technologies, are going to have issues with local climactic impacts - e.g. solar panels in the rain forest.  Outreach programs to improve infrastructure from the bottom up, seems to be a good idea.  Build the computers, then the infrastructure to support access, then the access itself.

There is obviously not enough exposure of what is going on in the developing countries.  We currently view this from the lense of our perspective.  We have very little knowledge of the information of what's going on in the developing nations.  We don't really know much about how the developing world is developing it's science unless we go looking for it.  Blogging can be some of this outreach, however the scientific publication institutions can also improve this as well.  PLoS just released a resource on tropical diseases (need link) which the majority of the research was pushed by researchers in the developing nations which are the most affected by these diseases.

Another issue is how can science be verified and how can people find meaningful information on the web?  One suggestion was to make sure that thinks are highly linked and well sourced.  This is the current standard of science, but should it also be applied to blogging?

Another issue is how much information can be released by blogging.  Blogging allows people to be pedestrian, which is not an insult.  It allows the information to reach people without the necessary training in the depth of the information.  It moves beyond the 'publish or perish' mantra. One person made this pitch: we should use plain language.  This type of writing should be really pushed forward.  Make your work accessible!

The open access movement is in the process of leading people to primary literature, but not much to the secondary literature.  Scientific American, etc are not yet accessible.  Science and Nature do have News and Views sections, of course, however these aren't accessible.  PLoS does have editorial articles that are openly available.  And those articles are necessary for better outreach, because it is what can be accessible for most people.  Currently blogs are the best we have for getting these ideas out.

There is also the issue of who the audience in the blog.  You must make sure you know and target your audience.  One important thing to remember when blogging is that many things are lost in the translation.

The discussion has shifted to how to create greater access out into the web.  Linking your blog to a site as a way of getting your information out there.  Postgenomic (postgenomic.com) indexes >700 blogs, and pulls information from the blogs and integrates it.  This may be a way to better mine and link out blogs for wider consumption.

Another way to do this is search engine optimization, however, this is usually a time and monetarily expensive barrier for most people.  Another way is to utilize local mirrors, and to use this to mail CDs of journals physically to low access areas which could then be hosted on these local mirrors.

One commenter brought up a physics program set up by UNESCO which will allow people to send in e-mails, without a search engine, but allows people with low access.  It's centered around e-mail based queries.  this could be utlized to build a new network whereby people e-mail in keywords, which then quiries pubmed, and then returns the results in ASCII format.  These could then be used as sources for people to download the full article if desired.

Openwetware is another resource which possibly could be better utilized.  It was just mentioned, but it's a wiki based site that is used to help better share information across.  And global voices, is a site which takes international blogs and translates them to other languages.  This would also be interesting to utilize better.

Blogged with Flock

Semi-Live Blogging the Science Blogging Conference

Open Science

This session was highly interesting, however it was slightly disjointed, which is probably reflective of the state in which the current architecture of science publication.  There is so much changing in this area right now that there are many many issues which need to be thoughtfully discussed, analyzed and thoroughly examined.  This post is going to be very disjointed, but there were many many issues in this session which I felt were wonderfully raised and really deserve a lot of attention.

Here's the Laundry list of issues (very brief summaries, some of which I'll expand upon) which were raised:

• networking information and data access with the mounting huge amount of information available
• hierarchical editing structures of journals currently in place, and possible better alternatives to the current structure
• paper embargoes and science journalism
• access, editing, and web 2.0 integration with science
• how browsing has changed and how science can integrate with that
• intellectual property and open science / interface between pharma and academe
• integration of international barrier to science communication
• how do you make science more open (answer: incentives, how?)

Below are a couple of ideas that I want to really flush out.  I'll include time stamped updates later, but this is just so that I don't forget what's going on.  Hurray live-blogging.

The idea that perhaps science is getting so broad that at some point the peer-reviewed journals are not going to provide any informative information, but rather will become interesting tidbits of discussion, but will not influence the vast majority of research.  How are the major publications going to do with this?  And how should scientists cope with the fact that the informational web is getting so large that impact factors are going to get drowned out?  How will academe deal with this shift in structure and it's reward based system for publication?

One rather interesting point that was brought up was that multidisciplinarity has actually decreased the ability of researchers to publish papers.  For researchers which are cross pollenating fields, some of them are finding that getting reviewers is much harder than when they are trying to publish in a specified microcosm.  I find this particularly interesting in the light of the fact that the NIH is really pushing the style of grants that create synergistic collaborations between labs of varied fields.  This seems to be one area in which there is an obvious interest, but that reviewers have not gotten to the point of really feeling the incentive to help push research that is out of their microcosm, even if there is overlap.  One thing that must be changed is the ways in which scientists perceive their roles in science.  We can no longer be the curators of the microcosms, but rather we must impart our expertise where we can, but not limit ourselves to one small select area.

This leads me to the next issue of how the peer review should be used.  One commenter suggested to use of peer review as a smell test rather than a litmus test - allow access to the community, and then let them do the flushing of the research.  We currently leave too much trust is put in the peer-review system.  What must be changed is how willing scientists will be to place their name, their reputation, and their knowledge in the open for discussion and disclosure of science.

On top of this one issue is how citations are used.  One commenter posited that better citation analysis for publications would be worthwhile.  They suggested other information about how the citation is being used such as why and how did the citation impact later publications.

I would like to end with some questions that I would like to ponder.  Can the current memes be broken when the NIH and government still are based out of the old structures?  Can a new structure and hierarchy of science be created if the peer review standard is still being used for the funding of the science?  how could we rethink this structure so that we could still reward researchers but also incentivize it so that these structures naturally develop?  How will the new generation affect the scientific infrustructure?  How can user based programs and network based infrastructures change the current architecture of science publication?  how can the newer infrastructures handle and represent the data that is being generated and help streamline the community discussion of science?

Some perspective for the new year

To start off this year, I'm going against one of my instincts.  Starting now I'm publishing facts, stories, tidbits and other nuggets that I find on the web that interest me for one reason or another.  Of course by publishing I am simply referring to blogging, however, it is in the sense the same matter.  I'm making available for public consumption my opinions, perspectives and liabilities.  This of course has the inherent danger of repercussion, so I shall try to parse my words wisely.  Unfortunately amongst the onslaught of newsworthy pieces, time to edit and prepare works is ultimately my most lacking resource.  I shall have to learn to be articulate.

Some of this is driven in part because I long to refine my narrative voice and to find a place for it, even if no one is reading what I write.  Partly it is due to a sense that I feel that some of the most important news and information is being lost amongst the depth and breadth that is the internet.  I must find a way to consolidate.

Fittingly, the first document which has caught my eye this year is one which stands as an indictment of the current news industry.  This article is by John Hockenberry relates his experiences at Dateline NBC.

It starts off with a anecdote about the new news, and how technology can be used in the modern age to impact people and impart information not just on a factual level but also on a empathic level.  From this Mr Hockenberry launches into his diatribe about how the news industry, as represented by his personal experience with Dateline NBC, has forgotten the viewer.  He argues that it continues to drowned itself by trying to appeal to people's emotional core rather than engaging them actively or intellectually.

Having forsaken TV myself, I find myself having drawn the same conclusions.  These conclusions come not from personal experience working within the media, but rather having turned it away as not being a useful source of information anymore.  Too often I find myself dry and bored with the information that newscasters present.  Although it is the news, the vast amount of it is not important and relates very little information worth knowing.  And when a story does contain information worth relating, the information is usually so glib that other sources must then be sought out to find, verify and improve upon the newscast.

One point that Mr. Hockenberry makes is that the news industry has become so centered around the 'emotional core' of the viewer that it doesn't actually tell the story anymore.  He contrasts this with "[t]he straightforward questions and answers posed by [the] film [No End in Sight, by Charles Ferguson] are so rare in network news today that they seem like an exotic, innovative form of cinema, although they're techniques that belong to the Murrow era."  To be quite honest, I find it slightly telling that this sort of statement is also made in light of the success of the movie Good Night and Good Luck a few years back which characterized Murrow's style of journalism. 

On some level there is at least some audience which is grasping for real news to be shown again.  Surely some people are clamoring for the editors, the management, and the lobbyists to be taken out of the news and the facts presented.  Hockenberry's indictment stem from a lack of understanding of how the technologies surrounding the news have change.  I do agree with his points about technology, however I commend him most for his understanding that the new industry has lost it's sense of truth.  While I don't have a lifetime of experience with the news to work with, the one which is shown today seems to have lost it's sense of necessity.  It no longer presents the facts that are important for citizens to engage themselves in the world economy.  Rather it buries the truth somewhere amongst the debris of emotional ploys and consumption driven marketing.

Therefore, at least for myself, I am going to start cataloging the true news which I find.  I don't expect to make a difference or much of an impact.  However, I do expect to have a place in which I can find solace, examine facts under a magnifying lens, and perhaps even relate those to others in some way.  The news media may have lost it's way, and so I plan to find my own.  A path written by rumination, documentation, and genuine lust for perspective.

In this quest to more fully understand the world around me please bear with me.  I have not yet found my voice, and it will probably take me some time to do so.  Also, bear with the fact that by training I am a scientist.  I love to analyze, to take something and turn it on it's head.  While this piece may not have had a lot of analysis, expect that of later articles which I post.

---

"You Don't Understand Our Audience: What I learned about network television at Dateline NBC."
By John Hockenberry
http://www.technologyreview.com/printer_friendly_article.aspx?id=19845