mosquitos bit me on the exposed arm, but it did not hurt and I have no marks

I got it from the Malaria Clinical Trials Center at Seattle Biomed. I am participating in a clinical trial which is measuring change of the immune response in the liver for a person who gets malaria several times after never having had it before. I had never before had malaria and I met other inclusion criteria, so I joined the study.

I will be in this study for a few months and I will post more details as time goes on. For now let me describe the process. There ought not be any symptoms for my having malaria; I will be clinically positive but cured before I become symptomatic. A week before meeting the mosquitoes I started taking chloroquine, which has been a standard drug for treating and preventing malaria since the 1940s. Malaria is a disease caused by a protist called a Plasmodium. This protist has several life cycles, including living in a mosquito in one form, in the human liver in another form, and then from the liver into the human blood stream in another form. Each form is as different from others as a caterpillar is from a butterfly.

The chloroquine stops the protist from transferring from my liver to my blood, so right now, the malaria in my liver is unaffected except that it has nowhere to go. My liver is attacking the malaria and learning how to kill it there. After a week I will take primaquine, which targets malaria in the liver but does not affect malaria in the blood. With both of those in me, the malaria will die. In addition to that eventually I will take Malarone, which is a combination of other drugs which also targets malaria everywhere. So in the end I will have no malaria.

Malaria kills many people worldwide and researchers need human subjects from which to learn about the diseases and to test treatments. I encourage all people to support local research in any way they can to improve the lives of others and make the world a better place for everyone.

We organized a meeting On Friday 30 December and talked for three hours. It was Brian, Garrett Cobarr whose site is Whole Thinking, Jacob Caggiano of Journalism that Matters and Future Soup, Christopher Sheats of the Washington Pirate Party, Mark Swanson and I.

We talked about the problems of academic journals. The traditional model for publishing in academic journals is that they publish research articles written by scientists who submit them to the journal. The journal arranges a peer-review for the articles, then publishes the article which its editorial system finds to be best. The journal’s marketing team then sells the journal, usually to libraries along with many other journals which a third party sells as a collection of subscriptions. One example of a commercial online database through which a library may access articles in their subscribed journals is Elsevier, so technology exists to serve online articles to users. This system is problematic for the following reasons:

1. Much of the research which scientists do is government-funded. The scientists write the articles then donate them to journals, which publish them as commercial content. The public pays taxes for the research, then pays the publishers when public libraries buy their journals. Some people say that the journals are overpriced because online publishing is extremely low cost and their publishing fees are extremely high.
2. The journals are each private entities whose editorial boards have bias. They choose what to publish and what to not publish and the views of the journal board may not reflect the desires of contemporary scientists in the field.
3. The journals are not infinite in size. They cannot publish all good information, whereas another media like an online repository would be limitless.
4. The peer review process is not transparent.
5. The journal review process has become outdated as compared with contemporary internet culture.
6. Journals promote the use of copyright on articles which they publish, whereas many scientists may want their work freely distributed.

The Open Science Federation works in many projects and especially with the Northwest Association of Biomedical Researchers (NWABR), but it does not currently have a megaproject of international utility. Right now we are exploring our options for getting involved somehow in journal reform.

Biobanks pose some new issues in clinical research which have not been addressed and settled with anything approaching broad consensus. The problems are vast, mostly non-scientific, intimately related with online communication, and specifically affect me and people around me now.

This started at an NWABR meeting. NWABR is the Northwest Association of Biomedical Researchers. They are a network of organizations which helps biotech organizations coordinate their work in this region, and specifically they do a lot to promote outreach and education. The situation is that most biotech organizations do not need a full outreach department, so everyone can dip into a common pool and share educational resources. NWABR particularly works to make sure that people appreciate biotech work done in this area.

Ro from HVTN sent out a notice suggesting that we go, so I went and met lots of interesting people and loved it. In the next meeting I met this woman named Kelly Edwards and everything she said about research ethics was things that I wanted to learn to say. We met up later and talked about the biobank entry on Wikipedia, then she looped me in with some other people.

We came up with this plan for me to add some introductory content on the biobank entry and related articles, they will give that expert review, then I see if I can attract more community attention. This thrills me because this is exactly the kind of collaboration I have in mind for many areas of scientific research, and especially those fields which depend on community collaboration.

I wonder how this will go?

There was a meetup in the conference which was only for people who are involved in community education, so no scientists. All of us often circulate email around and names appear on lists, and now that about 60-70 of us were all in a room together the host passed a microphone around so that everyone could say their name, their title, and which site they represent. I heard a few names and started thinking… what can I possibly do with this information? I already knew who I wanted to meet and was not really ready to hunt anyone down by location. I was among the first to get the microphone and when it came to me I hijacked it for a few extra seconds: “My name is Lane Rasberry and I am a community representative for the Seattle site. I edit Wikipedia; if you are interested in Wikipedia and HIV then please come talk to me.” No one else copied my lead in doing this. I wonder who else in that room made a connection with other people just based on that introduction?

People came up to me. One was a community educator in another state. I saw him around the conference and thought he was beautiful, but I did not have a chance to introduce myself immediately. He asked me about Wikipedia and I could not have been more thrilled to have a common interest. We hung out for the rest of the conference and I like everything about him – he is clever, has good ideas, awesome social skills, and interesting stories. He told me that I was adorable, which is not really what I want to hear from someone I think is hot, but a lot of people use that word to describe me so I take the compliment. If I had my wish it would be that I could do my life’s work and only come into contact with the most beautiful people, and I am always thrilled to find that intersection where someone is already doing things which relate to my work and the person is good looking. We made plans to stay in touch – I hope that we can.

A person from Los Angeles named Michelle Simek wanted to tackle the Wikipedia microbicide articles for me. There is research in vaginal and rectal microbicides which could prevent HIV, and there are no Wikipedia articles for them. I started the articles and she is going to give me more sources, review them, then together we are going to connect to a broader audience.

In one of the science sessions I was sitting behind this guy with a laptop. He Google searched for HIV vaccine and got on Wikipedia. I watched him go from there to Wikipedia articles for the HVTN, RV 144, and HVTN 502. I talked to him for a few minutes about this and got his contact info. I want to pitch him more deeply later, because I know that what I saw him do is something that a significant percentage of all the people in the network have done. He instinctively rationalized to me for no reason at all – “I was just seeing what it said.” I am sure that he was not even aware that he was making an excuse, as if I cared why he was using Wikipedia or did not know exactly how he came to be there. There is a lot of Wikipedia shame for a certain demographic with which I work; they see it as an illegitimate or disreputable source of information. As time goes on I feel like I am better able to read the very thoughts of such people when I talk to them about Wikipedia.

This guy named Kevin Fisher had a presentation which gave a lot of interesting history on HIV research which I want to incorporate into Wikipedia articles. He sent me his presentation. Lisa Donahue is the HVTN graphic and web designer and she said she could connect me to infographics. Genevieve and I are still talking about Wikipedia.

The actual conference presentations were talking about PreP and RV 144 this year. Also there were presentations about problems connecting to more communities, and still this year I have not found anyone who talks about using internet and social media to connect to more people. The lack of internet juice in everything the HVTN does astounds me.

Nilekani wrote a book called Imagining India in 2009 and it seemed to me that he had progressive and well-reasoned ideas. I am definitely his fan. The ID system he proposed was to include a card with a huge amount of memory by any American identification standard. It would be an ID, a bank card, something for doing financial transactions, and include fingerprint and optical scans.

screenshot

The website is full of ads. Besides the obvious ads to connect me with 1000s of sexy singles in my area and the ad for me to buy a cheap vacation, there is a script in the site to make words link to sales websites. In the picture you can see the word “smart” in the phrase “smart card” is green. If I click on that it takes me to a site which sells bogus online masters degrees. If I click on the word “loans” I go to a website which offers a horrible third-party credit card. If I click on “enjoy” then I get porn.

The English was written by a non-English speaker, which is bizarre because it is so easy to find English speakers in India especially in the computer industry and in top-level government.

I wonder who collects the ad revenue from this? Incredible India!

I was fresh from Infocamp was was great this year and I advertised online about this. Seven people including Kat and I attended and that was plenty to keep a good conversation.

We did not actually get much done with regards to promoting libraries because most of the attendees were new to Wikipedia. I was the most active user. There was a lot of interest and I think that all this energy and enthusiasm can perpetuate itself, so I am going to start a monthly Seattle Wikipedians meetup. We did this at Allegro Cafe and since I love that place that is where I am going to start arranging it.

The title of her talk was “Global health and the media: what’s news and what’s not, and why.” The audience were statisticians in public health and the purpose of the talk was to give information to them so that if they ever met with a journalist, then they would have background on the kinds of information which would be most likely to be published media. This is a very useful topic for discussion, but the irony that I felt in the room was that Silberner, a woman who had every reason to be confident in a lifetime of enviable journalistic success and recognition, spent an uncomfortable amount of time defending herself and her industry as she perceived it. It seemed to me that she was feeling the pains of competition with new media, and she had decided for herself that her reaction to it would be rejection of it and competition against it rather than embracing it. The things she said go against the ethics and customs of my generation so thoroughly that she seemed alien to me.

I am grateful for her talk and insight and I have a lot of respect for what she has done, and she did say useful things which I did not know and which were insightful. However, I like blogging about the conflict between people opposed to using computer technology and people who enjoy it, so that is my focus.

Silberner mostly talked about newspapers, but some of her advice was about preparing articles for journals or news or radio broadcasts. At the beginning of her talk she said, “Do not get me started about bloggers” and she said it in a way that I interpreted to mean that she felt bloggers were so far removed from journalism that they were beneath discussion for the evening.

She stated that “news is something which happens to editors,” meaning that if editors have a personal bias in their lives because of their personal experience, then they are more likely to write about this. While I can accept that as editor’s behavior, that fact mattered a lot more in the days of newspapers and magazines when people read what was placed in front of them. Nowadays I get my news from an aggregator so I would say that news increasingly is what happens to readers. She gave advice about establishing relationships between the PR offices of organizations and journalists, and this seems like a good idea, but not on the basis she was suggesting.

She talked about other similar issues which take into account a lowest common denominator – the news publishes fear pieces, the news will not publish numbers or statistics, and the news will not publish things which require technical background. All of these issues assume that the readers have no choice in what they consume, and speaking for myself I am age 31 and have never lived in a world where highly specialized news tailored to my interests was not always delivered to me. I am aware of the kind of reporting which happens in America which ties all issues to a political interest and feeds a demographic which seems to me to be scientifically and technically illiterate and also ignorant of global affairs, but I do not participate in that subculture. I regret that Silberner ever had to cater to those tastes, because she is brilliant, but I could not help but feel that she did not realize that because of computer advances she did not have to live in that strange world of having intelligent things to say but being obliged to dumb everything down.

When she took questions after her talk I was feeling dumbfounded. For the first question, someone (not me!) asked her to talk about bloggers and they specifically asked why she had said that the audience should not have her start talking about bloggers. She said the predictable old line – they are not trained, they have no editorial review, and they have no system for proving integrity. What I felt was missing from her answer was a critique of blogging as a medium – to me blogging is a radical new way of communicating, but my understanding of her perception was that blogging was a system by means of which new competitors pour low-quality product into her familiar existing medium. I felt like she was missing the point entirely. I found her twitter profile and she uses it irregularly a few times a month. I took a picture of a recent conversation she had.

She said that most journalists have become “content providers” and she expressed sadness at the trend. I also think it is regretful, but I think that I see something see does not – another class of people outside of the social circle of old journalists are becoming the new journalists, and if any of them reached out to the old guard I think that the old ones would tend to say that all journalists are being laid off rather than say that many journalists are getting replaced by workers for other forms of media.

It is my opinion that the quality of media content has never been greater and the quantity of the same has never grown so fast.

List of libraries in Seattle

This was for Wikipedia loves Libraries!, an initiative to get people more involved in their local libraries.

Here is the situation. Seattle, like any other city of this size and status, has libraries. There are the city libraries, like Seattle Public Library; the university libraries, like at the University of Washington; museum libraries, like most museums have a named library such as Seattle Art Museum’s McCaw Foundation Library; every research institute around here has a library, such as Fred Hutchinson Cancer Research Center’s Arnold Library; then there are city offices which have libraries, law firms with libraries, and private organizations who have libraries. I asked everyone in Seattle – many librarians at the city library, at various universities, at museums, at InfoCamp, and and the IR12 conference, “Who has a list of all the libraries? Who knows what kinds of materials all the libraries contain?” People mostly had no idea. Some people referred me to a reference called the American Library Directory.

The American Library Directory is a yearly updated listing of many libraries. They get contact information, addresses, names of librarians, a count of holdings, a year of founding, and then sometimes some description of a focus or specialization. This is really cool but it is not cool that it is not online, and that the book is extremely expensive and only held in a few places, and that small libraries are excluded without defined exclusion criteria. There ought to be a free, online, publicly moderated list of all libraries with a quick way to get detailed information about all of them.

This is why I made this list. Some version of this list ought to be made for every city in the world.

Here are some problems – neither the ALD or any other source typically publishes the history of libraries. Libraries are supposed to be a bastion of research but they seem not to expect that anyone would ever ask the most obvious questions about the library itself. I am posting one of the best-case scenarios in all the libraries I have checked in Seattle. The picture is a web capture of the East Asia Library at the University of Washington. The information is interesting and I am glad they posted it, but it is problematic. The first problem is authorship – who wrote this blurb? Was it a custodian of this collection? Just a regular staff librarian? Perhaps an internet-loving student intern? Maybe someone unaffiliated with the UW wrote this, and then the UW plagiarized it. Maybe the webmaster wrote it, or found this content online. Wherever it came from, I am sure no one remembers. There is no date on this information and there is no authorship. If the university published a book about itself I am sure they would remember to name an author and put a date of publication. How did it come to be that the keepers of information became so out of touch that they see no need to do this for information online? I know there are ways to reference websites, but the point that I want to make is that this is a low-quality source. And also there is no promise that this information will be retained; the university could revamp its website and then this link and this information would be gone from linkrot. With me as a researcher, it is disappointing to me when I cite someone and their link goes away. Especially when I have will to support an institution like a university library, I expect them to at least provide me the simplest materials possible to do the most obvious work, and they are not meeting my need.

click for full-size picture of the library website

In the case of the UW’s East Asia Library, this is how they describe their collection: “634,500 volumes of publications on East Asia in Chinese, Japanese, Korean, Tibetan, Manchurian, and other languages.” Other libraries also just describe their collections with a number and say that is their holdings, and they may also list a number of subscriptions. But that is hardly useful information, and it is almost moot considering that very soon all out-of-copyright texts are going to be available online. The information I really want is what kinds of holdings they have. In the case of the East Asia Library at UW – perhaps there is some theme to these books? Is a representative mix of the publications of those cultures, or do they have notable special collections? I asked a lot of librarians this. I am not sure that they understood me. In any case I got no answer of how to qualify the collections of libraries.

I am not sure what the solutions to these problems are.

I had never heard this guy’s name but I was familiar with a lot of his work, and I never knew that it was all coming from the same team. I am going to describe his projects and then their common relevance. I am not sure exactly what part Minello had in all these, but he was intimately involved.

The Blair Witch Project was a 1999 American horror movie. The premise of the film was that three college students were using their own camera to make a documentary about a witch in a forest, and the witch haunts them. The movie is shot not as a professional would, but as if the students in the movie were actually filming each other. The movie gives the idea that it is a real documentary. To go with the movie, there were websites set up wherein people could talk about the Blair Witch, and collectively visitors to the website all pretended together that the movie was real, and that the witch has a long history, and that they had evidence of haunting. All of this was a complete advertisement, but in 1999, people were just discovering internet and being able to participate in both watching a movie and talking about how the movie was real excited a lot of people. As an advertising campaign it was successful. This low-budget movie became one of the hits of the year, out-competing Hollywood movies. The interesting part about this was that the general public became free advertisers for the movie because when they participated in discussion, they were advertising. Minello said that the online fanbase was about 1000 people, and they sparked national attention. Minello compared their treatment of Blair Witch’s fanbase to the Hollywood company Paramount’s treatment of theirs – they were sending cease and desist legal threats to people who were discussing the popular show Star Trek on their websites, because they wanted to have total control of all discussion.

In 2005 he was involved with another ad campaign which I knew very well – Audi’s “Art of the Heist”. Audi is a car company and they had this new car they wanted to advertise. Instead of presenting they car at a national car show as is traditionally done, they promised to present it but then in its place put up notices that the car had been stolen. They had a website setup where they gave evidence of where the car was, and public could respond to that evidence. This was the campaign – the car was not really stolen and the evidence was fake, but participating in the recovery of the car was a game. Instead of showing the car around the country, they had actors staged pretending to be detectives at public festivals who would get people involved in finding the thieves, who would be scheduled to make an appearance. The campaign was set up so that it would look real, but as soon as someone asked a single question on the website or pressed the actors, they would come to know that it is a game for them. The campaign was very successful – more than 10,000 people took time out of their lives to post “clues” or report evidence about seeing the stolen car.

Minello also did the ad campaigns for HBO’s tv shows True Blood and Game of Thrones. True Blood is a show about vampires who drink fake blood from laboratories so that they do not have to kill humans. The ad campaign for this was that they sent this fake blood from the tv show to popular YouTube vloggers and asked them to drink the blood on webcam. People did, and so again they got volunteer advertisers. Game of Thrones is a show which takes place in medieval times, and they sent ancient scrolls out for popular vloggers to discuss. Again, people did this on camera. They had fun, so did their viewers, and HBO got cheap personal advertising.

Minello ended by talking about the history of using the public to advertise among themselves. He cited the stories of Don the Beachcomber and Trader Vic, the two restauranteurs who developed the concept of a Tiki Bar. A Tiki Bar is a bar, club, or restaurant decorated in Polynesian theme which encourages guests to pretend that they are on a tropical island while they are visiting. The attraction to the bar is not primarily the bar itself, but the fact that the patrons are supposed to all pretend among themselves that they are beach explorers.

The other example he gave was of the exit to the funhouse at Steeplechase Amusement Park on Coney Island. The situation was that there was a funhouse where visitors would pay to enter and then be continually disturbed with moving floor, strange lights, and various distractions as they walked through the house. At the end there was a place where the public could see people in the house looking scared or confused, but the people inside could not see their audience. When they left the house, they would come to know that people had been laughing at them and they themselves could join the audience and laugh at the next to arrive. The attraction was the customers, not the premises.

At question time I asked Minello the most pressing question I had and one that I had trouble holding in during the talk – “What does your company promise to your clients in terms of metrics of success, and how can you predict whether a campaign will work?” His answer was that he had no metrics and made promises based on no science. The only promise he could make was that if he did a campaign similar to a previous campaign, then presumably the interests of society have not changed and a similar result will come.

After the presentation I talked to some people about this guy, and many of them said that he talked too much and gave too many examples. I myself did not get enough.

I heard Nam-ho Park from Forum One speak. He had asked so many good questions when I gave the Wikipedia presentation at the Institute for Health Metrics and Evaluation. Forum One is a company that does marketing for health agencies, and in particular, they know how to make visual representations of statistics. After his talk I asked him how I could get started in this and he said that I should check out Tableau Software in Fremont.

I met this guy named Chris Sheats who was interested in learning WordPress and promoting the Washington Pirate Party. Many people are confused about what pirate political parties mean – it has nothing to do with software piracy. Among other things, it refers to establishing software and information rights where currently no law exists, and many people do quite innocuous things which could easily be done in books but which become less legal if done online. Instead of leaving these people to, I might say, “pirate uncharted wild seas,” the pirate party asks for legal reform to move the careers of practically everyone who works with computers from an ambiguous area to the legal area. I hope I get to work more with him in the future – he seemed like someone with good ideas who needed practice with his delivery.

I met a software guy who had worked a little for the Wikimedia Foundation. He implemented a program called Living Voters Guide which was an example of how people can use crowdsourced discussion to help people sort their thoughts on political issues. I like the idea but the platform needs work.

I gave a Wikipedia talk at this event. Some people came and they asked good questions and at this point I am confident in my ability to talk about Wikipedia for hours in front of a crowd. There are different talks I am able to give, and I am in the process of sorting my talks so that I can be sure to cover the most important points in the least time in the future. I invited the people there to a meetup on October 25 so I will see how that turns out.

I got contacts for lots of other people. I have a lot to follow up on!