bluerasberry

Types of patient information in clinical research

By bluerasberry on 2014-02-10

Elsewhere I talk about clinical research.

Suppose that a research participant wants information about a clinical trial. What types of information would this person want? I was thinking to model information types as follows:

Logistical information
Research participant rights
Health information
Information about the particular clinical trial

Logistical information refers to all the metadata about the clinical trial, including the fact that the trial exists, who is managing it, where it is, what commitment participants make in joining, who qualifies to join, and who to contact for more information. Pharma companies are exploring being more open with this data even though they wish to withhold a lot of it too. At least they want the fact of the existence of the trials to be more available to potential participants, which is a long overdue concept to support. It is a matter of justice to allow stakeholders in the development of medical treatments to be able to find and volunteer for trials relevant to their interests. Pharma organizations also want this for benevolent reasons and because it advances their business model. Every single trial will have its own logistical information; perhaps all of this information could be sorted into short uniform fields and go in a database.

Research participants rights are whatever every research participant should know before participating in a clinical trials. These are not well articulated anywhere, and they certainly are not presented in a uniform way at every trial, but there is some unwritten set of rights which are universal and which could be better presented and discussed. I would like for absolutely everyone conducting clinical research to acknowledge some presentation of research participant rights, probably which would be either endorsed by a government or some major nonprofit. Presumably they would agree with those rights but if not, then still they could say something about rights. Participants have some kind of rights and this ought to be a global conversation to be presented in about a page of text.

Health information is less on the agenda of clinical researchers because it is complicated, seems distant from the research itself, and is troublesome to explain. The idea here is that if research seeks to solve a health problem, and participants agree to participate in that research, then the researchers ought to make sure that the participants understand the health problem. So for example if someone has a cancer drug they want to test, and they recruit people to test the drug in their bodies on the premise of researching a disease, then the researchers have some obligation to provide education about the disease fundamentals even if those are unrelated to their research. I am expecting the researchers to provide a layman explanation of the disease. Maybe they write this if they like no existing explanations, or maybe they just recommend an existing explanation. These materials would be made per disease, and if multiple research projects all focused on the same disease, then they could share this base set of educational tools.

Lastly the researchers share information about their particular clinical trial. They say what they will. Every trial would be different. Researchers are good enough at doing this.

Researchers typically want to improve 1, think 4 is good enough, and do not expect that 2 or 3 matter much at all. I would like to increase the obligation for all researchers to give the second and third information types because those most benefit all research participants personally.

Posted in clinical research, drug, education, health, rights | Tagged pharma | Leave a response

The asset of lesser worth

By bluerasberry on 2014-01-25

For traditional educational organizations, it is easy to create high quality information content but difficult to disseminate them to the right audience. For Wikipedia, it is easy to disseminate information to the right audience, but difficult to create high quality information content. I argue that the power to disseminate information is the more scarce and more valuable asset than the creation or acquisition of the information to be shared.

Consider information, education, communication, and the concept of media. Consider as an example the act of sharing information related to health, because I like health information, but apply the analogy however you wish. Imagine that there is some entity which wishes to propagate some health message. I see two parts to what this entity must to do achieve its aim – it compiles its message, and then it arranges for the message to travel to its target.

Consider a common message, like “If a person tests positive for an HIV infection, then if they take certain antiviral drugs under certain conditions, then the count of virus in their body can be lessened and their health may be expected to change in certain ways.” HIV is a major public health concern, so I use that example as an issue with which people in every society should have some understanding.

Much work and expense are expended in compiling a message. For a health message to have value, ideally it should be derived from evidence-based medicine research, if one is biased to favor science. The entirety of the costs of research, the establishment of international networks of universities, medical schools, research foundations, commercial developers, government offices, and the whole of whatever is called medical infrastructure has to be created just to be able to make simple statements about evidence-based medicine. It was not so long ago that there was no scientific method, and when that was established there was no academic publishing to share the ideas, and publishing existed for some time before peer review decreased the power of arguments from authority, and randomized controlled trials came to be proposed as a tool for further greatly weakening biases. We still do not actually let all researchers have open access to scientific research but we are getting there, and it still surprises a lot of scientists and non-scientists alike to realize that the systematic review (the concept of combining the results of multiple research projects) is a new concept which came to be only because of cost decreases associated with electron publishing. Some other tools are being developed which are very cool, and open science will be very interesting when everyone can check the methods and results of everyone elses’ work and also remix and build upon human knowledge. Putting all this together to some minimal extent is a prerequisite for making science-based statements about health, and when these individual pieces are strengthened, the message becomes more scientific and for people who like the science that means the message has more value. So once the science is done and a message is created, like for example the one above, it needs other maintenance. It has to be updated along with new science, and it has to be translated not only among languages but also within any given language to be relevant to its target audience. Much investment goes into crafting health messages. The social and technical infrastructure built around establishing and publishing health information is a modern miracle into which massive amounts of money, professional lives, and human thought have been poured, but the sum of it all as it exists today is contained within isolated isolated media systems which are not sufficiently available so as to be found upon request. Once any message is created, it does no good if it is not transmitted to be available to the people who need it when the message is needed.

Wikipedia certainly does not solve the entirety of the dissemination problem but it has proven itself to be a successful platform for penetrating the zeitgeist. It makes health information available to people whom no one even expected would want health information, and it presents it in a way in which its audiences consume it in great amounts. The pageviews that Wikipedia get establish it as an equal in popularity to any other health communication channel, and although I lack complete data or the ability to interpret the significance of the data I have, I am comfortable in suggesting that Wikipedia might be the most popular source of health information in the world, and that it is likely to become even more popular and pervasive. If it is not the most popular source of health information, it is at least extremely popular overall and overwhelmingly utilized by certain large demographics of people who are in communities with access to Internet information.

The traditional health organizations spend some amount of money to produce the health information they disseminate, but actually this is only an afterthought to the production of the information for professionals who need it intimately for their current work. I think that everyone agrees that the professionals need their research, but the extent to which second-tier users of the information should have access to it is moderated by the cost it would take to craft it and deliver. By “second tier users”, I include consumers of medical textbooks, like medical students, who are reading educational materials as a path to becoming equipped to read actual published scientific articles. Right now, the model we have for distributing medical textbooks is to commercially create and publish them, then to sell them to individuals. I feel that this is done only because of historical precedent, and that this is not a sustainable model for delivering all the information in all medical textbooks to all medical students and other interested persons in the world in all languages and to continually update them as needed. When I think about the investments of all regional health education and communication organizations, and how often they independently produce health information content with a copyright on it based on other copyrighted work that they could have copied if it were without copyright restrictions, and then when I think about the costs of trying to disseminate this information through society packaged in copyright to preserve the old restrictive model of dissemination, I try to imagine what would be different about the funding model if dissemination were perceived as the more valuable asset and the quality of the message were perceived as the asset of lesser worth.

My guess is that if some organization were to expend perhaps 100 million USD to create or acquire copyright to fundamental textbooks for every branch of medicine and then apply free licenses to these, then Wikipedia and other public spaces on the Internet would host these and attract the community which would manage dissemination of all the information therein, and dissemination costs would drop dramatically just as Wikipedia itself has been able to deliver large amounts of health information to large audiences already. The alternative to this is persisting with current dissemination models, which still expend the same 100 million USD to create the market of health educational materials, only the rights to this material are kept in private hands plus added to this is the unfathomable international expensive of distributing it.

Posted in health, Open access, Wikipedia | Tagged text | Leave a response

Devyani Khobragade documents

By bluerasberry on 2014-01-13

President Obama and Prime Minister Manmohan Singh walking together

there should be good relations and mutual understanding between India and the United States, even when cultural differences make one country angry at the other

I am interested in the Devyani Khobragade incident just as an America who reads the news and who has lived in India. I also happen to live in New York, so perhaps since this happened where I live people talk about the case more here.

I have read enough of the articles to know that the following documents are not on news sites or circulating around the Internet. If you like these documents please download them and share them with people about whom you will discuss India-United States relations. I am sharing them here because a lot of people have a lot of opinions about the case, but they do not even have the basic information in these documents to be able to understand all the issues. I may get more documents – I am not sure. If I get something more then I would share it.

These documents are all copyrighted by Devyani Khobragade, because I expect that either she authored them or her lawyer or executive assistant authored them as work for hire under her direction. I am sharing them here because they have all been presented as evidence before a Grand Jury and thus are open for a certain amount of public disclosure, but please respect Khobragade’s copyright in viewing and sharing these.

Khobragade, I wish you all success in your work as a diplomat and I hope that this case leads to mutual understanding between people in America and India. Thank you for your work.

Posted in New York City, rights, service industry | Tagged Sangeeta Richard | 1 Response

Requesting informed consent documents

By bluerasberry on 2014-01-11

Wikipedia could be used as a channel for conducting and managing information requests. This has not been done previously. I would like for it to be done in the future. This post is three of three in a series, and this one talks about Wikipedia and information requests. In other posts I describe MuckRock as a model for comparison to Wikipedia and the idea of using Wikipedia as a channel for making information requests.

In this post I have one big idea – that informed consent documents for clinical trials to be available online for the public. This is not controversial because no one thinks about this and the idea would strike almost anyone as odd, because the request itself asserts that these documents are not public and should be. People who do not know these documents exist would not know what to think of such a request, and probably the traditional view of the entities which hold these documents is that they are already public and should not be. There is misconception and lack of attention on this issue, and I myself am unusual for talking about this at all. So far as I know, no one else cares at all.

I want this because informed consent documents are the layman explanations of a clinical trial which are intended for public consultation, and if these documents cannot be brought by participants into public forums for discussion, then their ability to give informed consent is lessened. As an example of what I think this would enable, it could permit a person enrolling in a clinical trial to share the informed consent document with their friends and talk among them about the trial, just as they might do with other health concerns. Right now, there are restrictions which discourage research participants from doing this.

The informed consent document sharing could happen with or without Wikipedia, but since I feel that Wikipedia offers several unrelated sets of benefits to doing this and that any of those benefits could be used independently of any others, I am writing from the perspective that the documents should be free and they should be on Wikipedia. If they are free in any form, then they could also be mirrored on Wikipedia, so in any case Wikipedia could have some role in this.

Researchers could have a lot of objections to the sharing of these documents. Most of their objections would have nothing to do with patient safety, and in any case, the system of secrecy has some major financial motivations which present a financial conflict of interest which impedes any researcher’s ability to think clearly about this issue. Whatever objections may exist, the strongest argument for sharing these documents is that any one community stakeholder of a clinical trial has a right to have oversight on the clinical research happening to people in their community, and no other arguments preclude anyone else’s rights to discuss this public information. If there is no available layman information available to peruse, then the right to oversight is blocked. This right to oversight was called “respect for persons” in the United States treatise called the ”Belmont Report”, and has always been fundamental to research. This right is newly relevant now, because for the first time, online communication is part of many people’s lives and the informed consent process needs to change to acknowledge the advent of the Internet.

Some people may argue that the information I want is not or should not be public, but from my perspective, a confirmation from the copyright holders that they do not want this information to be public would be extremely useful also. There is no bad outcome to making this request.

About this post

I am writing this post for a range of audiences which include Wikipedians, participants in the open movement, persons interested in online health information, and persons interested in clinical research. This proposal is a convergence of the interests of these groups, and since these groups do not themselves have much natural overlap in interests and background understanding, I am going to give information which would give the context and perspective of each of these to the others. I encourage readers to skip around if something seems too simple, because I present some basics here. While nothing I say here is too complicated, I expect that among other things, medical researchers would have little understanding of how online media rights affect unmoderated discussions among strangers on the Internet, and media rights advocates may not immediately gather that informed consent documents are intended for public viewing as they have been copyrighted and shared privately (only for lack of sharing technology, so I argue) for decades.

The problem: It is not possible to discuss clinical research in a human way and it should be

The problem which this proposal addresses is the removal of the artificial barrier which research participants have in discussing their participation in clinical trials with the people in their social communication circles who help them make health decisions. A familiar analogy is that when someone has a serious health problem for which treatment will not guarantee a favorable outcome, their physician may offer them a range of choices for addressing their health concern. For example, the physician may present a patient with the difficult choice of choosing between a stressful medical treatment without promise of positive result or declining treatment and continuing to bear the medical problem, but not having to endure the treatment. in this case, the physician will strongly recommend that the patient consult with their family and friends before making a decision. In a similar way, persons who volunteer for clinical research should be able to discuss their participation in that research with the people who help them make decisions, and right now, it is not possible for people to talk about their research participation in a normal human way through the normal communication channels which humans use. The informed consent process is designed for conversation in the context of inhuman organizational oversight and with moderation by an organizational protocol, and although this has benefits, these current research practices have not been revised since the advent of the Internet, and I would like aspects of the research process involving ICDs to be revised to acknowledge Internet communication. I would like for people to be able to discuss clinical research online, such as on any kind of website including forums, blogs, Facebook Twitter, email, or any other online service which people use, but researchers currently prevent this by inappropriately using copyright protection to restrict the way that people can discuss what published information about clinical research exists for layman use and discussion. I would like for stakeholders in any given clinical trial to be able to discuss that trial while having free access to the informed consent document, which is the layman document which exists only for the purpose of explaining the trial to the public. Because these documents are copyrighted and withheld from the public, the public is harmed and is disempowered from understanding the implications and impact of clinical research. I am demanding that these documents be made available for people to read, redistribute, remix (such as with annotations, questions, and emphasis), and discuss, even when their discussions are not moderated by the entities conducting the research.

Statement of the request to clinical researchers
Suppose that you are a clinical researcher managing a clinical trial, and suppose that you are recruiting research participants from a certain community. A member of this community contacts you and asks you these things. How do you respond? I follow the questions with the answers I anticipate based on having received them lots of times.

Can I make an appointment to ask you some questions about your clinical trial?

I expect that any researcher would answer such questions and be grateful for the community interest.

I seem to be a suitable candidate for your clinical trial. May I have a copy of your informed consent document?

This question is currently the only route by means of which researchers would expect anyone to want or receive an informed consent document. The more usual case is that the potential research participant does not even want the document, but the researcher gives it to potential research participants during recruitment.

Can I, a non-participant in your trial but a member of the community of trial participants, have a copy of the informed consent document for your clinical trial?

I expect that any researcher would share this document, but public distribution of the informed consent document in this way would be memorably odd, and might only happen every few years to anyone working in the field. Still, anyone has a right to see the document, and a request like this would not be refused.

Can I have a copy of the informed consent document for your clinical trial, and will you grant me a license to republish and remix this document so that I can discuss it with others online?

I expect that any researcher would stop here and pass the request to others, who in turn would not know how to respond. The soft answer would be dissuasion, the next answer would be that harm would come to everyone if this happens, but I think that the hard answer is that the information is for the community to share and discuss and not for the researchers to withhold against community will.

Here is an example letter template that I would send to researchers.

Note that once the community makes the request to researchers, all possible outcomes are excellent for the community. Any of these may happen:

The researcher provides informed consent documents, and the community has more access to information.
The researcher declines the request, and then the community for the first time has explicit notice that this information is not available. The expectation that the information is available for public consultation is dispelled, and the relationship between researchers and the communities from which they recruit participants is changed just because of the new observation.
The researcher declines to answer the request, in which case all clinical trials conducted by the information withholding entity are in tension in a way which favors the rights of research participants. If I were a researcher, and I ever had any problem with a clinical trial for which the public had previously requested basic layman transparency, then I would not want to deal with my own past refusal to be transparent.

The place of the informed consent document in clinical research

Clinical research is health related research done with human volunteers as test subjects. These human volunteers are termed “research participants”, and any given instance of clinical research is called a “clinical trial”. Each clinical trial is managed by a researcher or researcher coordinator, with this person being a human (and not an organizational entity, for example) who does things including recruiting research participants and executing the study protocol. The “study protocol” is the manual which gives specifications for executing the clinical trial. “Recruitment” is the process by means of which a research coordinator requests a potential research participant to agree to participate in the informed consent process which would signify their entry into the trial. The informed consent process is an event during which the researcher and a potential research participant meet and discuss the trial with the expectation that if the research participant is willing to join the trial, is a suitable candidate, and can provide their informed consent to participate, then the researcher will invite the potential research participant to volunteer to enroll in the trial as a research participant. If a research participant provides their informed consent to enroll in a trial during the informed consent process, then that participant enrolls. Somewhere at the beginning of the informed consent process and definitely before a potential research participant can enroll in a clinical trial, the research coordinator will give the potential research participant a copy of the informed consent document (ICD). The ICD is a text, almost always published on paper, which contains certain text presented in a standardized way, and is necessary to the informed consent process but simultaneously – and this is the strange part that I am seeking to probe – somehow not containing any information which the public needs to have in the sense that practically all clinical researchers would hesitate to make this document too easily available for many people to read.

Lane’s premises about sharing the informed consent document – check Lane’s medical research sensibility here

What follows is a list of the premises which I hold about clinical research and which lead to my thinking in the way that I do. I present them here so that anyone can challenge them before reading too deeply in the rest of my idea, and because while I expect that others would accept my premises I also feel that I making an odd proposal outside of popular thought, and I want anyone to have access to the fundamentals from which I draw my conclusion.

Clinical researchers are bound by ethical duty and law to share some minimal amount of information about their research with the volunteers who agree to be research participants.
The informed consent document for a given trial contains the minimal amount of published information which the researchers see fit to share with research participants in its attempt to conduct the informed consent process.

No one would say that the informed consent document contains the minimum amount of information which researchers should share with participants, but it holds a unique place as the published information which passes from researcher to participant. Participants can request more verbal off-the-record information, but it would be exceptionally unusual and require complicated bureaucratic oversight to give research participants additional written information.
Additional information of major significance to study participation is shared outside the context of the informed consent document, and the usual case is that no information whatsoever about is presented in addition to the information contained in the informed consent document. If information is recognized as necessary to constitute informed consent then it is in the informed consent document.
Note that for various reasons, clinical researchers are not prepared to describe their informed consent documents as being “the minimal amount of published information…” and they would say that such a minimum does not exist, and that the informed consent document ought not be available outside the guidance and oversight of their appointed staff. They do not like these documents to be read by the public.

Participation in clinical research has benefits and risks. There is a concept in clinical research called “justice” which says that benefits and risks of clinical research should be fairly distributed.
The informed consent process and the conduct of clinical research is not only a private act between a researcher and a research participant, but it is also a community process wherein any community which provides volunteer research participants also has a right to have oversight over the clinical research which affects its members.
Communities have oversight on the clinical research for which their members volunteer, because communities share in the burden of the risks to which volunteers subject themselves by participating.
Right now, there is no particular communication channel for interested members of the community to have oversight over any clinical research happening in their community.

The nuance here is that there has been a cultural shift in expectations for communication since the advent of the Internet. People increasing expect public information relevant to their well-being to be available to them in a useful way.
The useful kind of oversight which communities would want but lack is the ability to participate

Harms of sharing the ICD
Undoubtedly, public access to ICDs would cause research harms, public health harms, and harm to individual research participants. I personally find these harms to be minimal and within the duty of the research coordinator to ameliorate, but I will comment a bit here.

Layman who read informed consent documents will not understand them outside the context of an in-person explanation from the researcher. This is true in many cases, but it is also true that researchers in partnership with something called an “institutional review board” do every reasonable thing in their power to make the documents as comprehensible as possible. Among other things, the documents are typically written in simple English (sometimes called international English, plain English, low-literacy English, or 6-8th grade level English), and everyone purports that the informed consent document is a necessary part of the informed consent process. All trial participants receive a paper copy of the informed consent document upon joining the trial, and they can already do as they like with this document, so long as they do not violate the copyright protecting it. This means that they discuss it with others in person, but not online.

If informed consent documents are shared then the public will come to know what research is happening where, and this will radically and fundamentally change the nature of clinical research because right now it has huge financial dependence on being able to conduct research on human volunteers in secrecy. This is also true, but this is an unrelated issue taken up by other activists who are doing other things. There is a movement called AllTrials, for example, which wants “all trials registered, all reported reported”. AllTrials is a great cause, I hope they achieve their aim, but they do nothing to directly benefit research participants and communities because even if all trials were registered and results were reported, that still would not free any layman explanation of what the trials mean. The informed consent document is the only media within clinical research which attempts to do this. Incidentally, I feel that AllTrials is overly science focused.

The greatest counterargument to avoiding harms and continuing the restriction of access to informed consent documents is that any one individual has a right to publicly discuss clinical trials in their community. That harm could come to others does not prevent others from having the right to exercise their own rights, especially when the harms which exist are solidly within the power of research coordinators to address and the benefits to participants for sharing the documents are great.

Read more
Again, my only idea is that information associated with clinical trials should be clearly designated as being for the public or not for the public, and that the information which is for the public should actually be accessible by the public.

I have another manifesto of this on Wikimedia Commons as ”Visualize Everything”. I also have something in Wikipedia workspace as WikiProject Clinical Trials. I am always ready to talk about this with anyone who feels passionate about participant rights in clinical trials.

Prototype
Most clinical trials do not meet Wikipedia’s inclusion criteria for discussion, so although Wikipedia would have some part in explaining the concept of clinical trials and connecting informed consent documents to the media archive listings for Wikipedia articles about research entities, this project would not lead to the creation of Wikipedia articles for most trials. Sometimes it would. I made a Wikipedia article for the PARAMOUNT trial because I was able to get an informed consent document for it.

Posted in biobanks, clinical research, research, Wikipedia | Tagged informed consent | Leave a response

Information requests on Wikipedia

By bluerasberry on 2014-01-04

Wikipedia could be used as a channel for conducting and managing information requests. This has not been done previously. I would like for it to be done in the future. This post is three of three in a series, and this one talks about Wikipedia and information requests. In other posts I describe MuckRock as a model for comparison and describe my own personal desire for a certain kind of medical information that I think about requesting through Wikipedia.

In this post I propose making information and media requests to organizations by posting the request on the talk page of the Wikipedia article covering them. I propose this on the following premises:

The talk page of the Wikipedia article on any given organization is the most popular and highest profile public place in which any such request can be posted
The information request process could be routinized here based on existing processes and years of related precedents
When the information requested advances the mission of Wikipedia, it would be welcomed by the Wikimedia community in this space
The infrastructure of Wikimedia presents the best available option for guiding the target of the request to upload or share the information by putting it into the Wikimedia collections
The process on Wikipedia could be modeled after similar request processes, such as that of MuckRock
A request on Wikipedia would more strongly compel a response than a request anywhere else

What follows are more details about these premises.

Wikipedia is a lot of things. Everyone knows it is an encyclopedia. Everyone knows it is a great publication to read when anyone wants an introduction to topics which can be summarized in encyclopedic format. A lot of people know with some degree of understanding that it is a wiki, which is a radical modern publication platform distinct from other publication platforms in that any reader of the publications content is invited to make any changes to the publication’s content as they like, with the expectation that other people may in turn make their own changes subsequently. Something about Wikipedia which is not often imagined is that it might be the world’s most popular communication channel for discussing any given topic. It is my opinion that the Wikipedia project is undervalued and the Wikimedia Foundation – either intentionally or not – perpetuates that undervaluing, and right now and since its founding practically all stakeholders in the existence of Wikipedia have been content to sustain a perception of Wikipedia that it is either not significant or exceptionally significant, but in any case, not to be compared with any other communication channel. I can understand why both Wikipedia project supporters and competitors would want this; however, a result of this is that Wikipedia and related projects are not utilized by persons doing communication and not even considered as communication tools.

The Wikimedia Foundation for a long time, perhaps since about 2007, has been happy to say that Wikipedia is among the top ten most popular web properties in the world. This is not controversial and is universally accepted; data for entities including comScore, Alexa Internet, and others back this. The Wikimedia Foundation has so far declined to say more than this, and while it is impressive to say this, most people have no particular directed response when hearing this. Something that I like to think about is the extent to which Wikipedia might be the fifth most popular source of information for any given topic. What, for example, are the most popular sources of information for a given topic, a given issue, a concept, a person, an animal, a law, a work of art, a field of study, or perhaps any given organization? For various reasons, although Wikipedia is the fifth-most popular web property, it is also the world’s most consulted source of information for almost any topic. This is because the more popular web properties are not actually publishing information of the sort which competes with Wikipedia, and also because web properties are much more popular than any other single communication channel. This has a lot of implications, but consider for example Wikipedia as the most popular source of information about companies or organizations.

Wikipedia is so popular because it has the favor of all search engines and any communication channels which make an information request that in any way connect to the Internet. If someone types the name of an organization into a search engine, then it is likely that the organization’s home page is returned first and then the Wikipedia article about them is the first returned result which is not an official website for the organization. This has been the case for nearly 10 years. One might say that an organization’s own website is the most popular source of information about the organization, and organizations’ own public relations staff certainly have a professional interest in making their employers think this is so, but increasingly, people understand that organizations will tell one story about themselves, and that information elsewhere on the Internet may tell another story. There are places on the Internet which are public space outside the moderation of people, organizations, and entities which are discussed, and sometimes, conversations may happen about an entity in a place where the entity is not empowered to hold complete control over the conversation.

Many people have never noticed this despite reading Wikipedia articles many times, but supplementary to every Wikipedia article, there is a discussion or talk page for that article. Anyone can view an article’s talk page by clicking the “talk” tab at the top of any Wikipedia article. The talk page is a place for discussing the development of that one Wikipedia article. It is emphatically not a public forum for discussing the subject of the article, and any such discussion is deleted to keep the community focused on the goal of developing the encyclopedia. Right now and historically, the talk page has been a place for Wikipedia contributors to talk with other Wikipedia contributors about developing articles. There have been historic attempts to have some discussions on talk pages with some organizations, in which sometimes Wikipedians ask in a haphazard way that organizations do something on Wikipedia. Typically the request is for organizations to kindly leave Wikipedia and quit trying to use the Wikipedia article about themselves as a place to post biased promotional content about themselves. Elsewhere on Wikipedia, typically not the talk pages about organizations, sometimes Wikipedians talk with organizations about some other kind of Wikipedia partnership. Examples of this include Wikipedia talk forums about arts, for example, where Wikipedians talk a bit with museums and ask them museum to grant them access to their digital collections so that Wikipedians can integrate those collections into Wikipedia. There has been some success in doing this but is a largely ungratifying exchange. The benefits to organizations doing this are limited, uncertain, and of dubious value, and the Wikipedians who manage these exchanges work very hard without getting the kind of support from institutions that they are expecting. None of this is relevant to the kind of information request which I have in mine, but such as they are, these are the kinds of information requests which happen on Wikipedia now. This kind of exchange has happened in a significant way probably not more than 2-300 times since 2001. It is something which does not happen spontaneously or in a routine way, and takes love and dedication to make it work.

Suppose that for whatever reason, there existed some organization somewhere that held some kind of media or information which it owed to the public. This already is an odd supposition, because many people do not imagine that organizations often “owe” the public anything. Governments could be a model for this, but in thinking about this, exclude governments because governments already have communication channels for the public to make requests for their information. Instead imagine that somehow a non-profit or commercial organization somehow has information or media which belongs to the public, or which it is obligated or under pressure to give to the public on request, and there is currently no particular communication channel by means of which members of the public can make a request to this entity to receive this public information. This would mean that the default action is that if anyone requested this information, then probably it would be their own private communication to the entity to request the information, and then that entity could reply back also privately. Before the advent of Internet it was possible for average people to think of no other way of communicating requests for information.

Since the advent of Internet there have been other options for making such requests. One option would be that an individual could make public requests, perhaps from their own website made for the purpose of making the request. Another option could be the MuckRock model, which I described in this post, and which MuckRock uses to make public requests for information from the US government. But the reason why MuckRock works is that there is such a thing as the Freedom of Information Act which compels the government to respond to information requests, and their model could not work the same way to get a response from entities which are not bound by law to respond to requests for information. When an entity is not bound by law to respond to a request, they are likely only to respond to it in a way that is favorable to them. Suppose that a person wants information, perhaps from a commercial organization, and both the commercial organization and the requester agree that the information being requested is owed to the public. Consider possible outcomes that may result depending on whether the request is done privately or whether it is made in a known, public, timestamped form.

Private individual request

The organization may give media in response to the request if they feel that it serves their interests to favor the requesting individual
If they fail to respond then no one except the individual requester would ever know
If they decline the request then no one except the individual requester would ever know

Public timestamped request

The organization may give media in response to the request if they feel that it serves their interests to favor the requesting community
If they fail to respond then it will be forever known to anyone who ever thinks to request the same information that an outstanding timestamped request is pending
If they decline the request it will be forever known to anyone who ever thinks to request the same information that the information requested was denied

I am not suggesting that Wikipedia be used to make any request for information which is not owed to the public, and in fact, organizations rarely owe or feel compelled to share any information with the public. But it sometimes happens, and if it does happen and someone wanted to use Wikipedia to make the request, then I think that is an idea worth exploring.

Some advantages of using Wikipedia to make the request are the visibility that Wikipedia can give the request, its trusted timestamp infrastructure already in place for all communications, the fact that Wikimedia projects themselves can host a broad range of information including casual conversations; media files of all types including images, audio, video, and entire archival documents; Wikimedia projects present a range of tools for media processing, categorization, and sorting; and best of all, if there is anything worth sharing through the encyclopedia, then Wikipedia is a natural place for presenting the information shared.

Posted in computer, research, Wikipedia | Tagged MuckRock, request | Leave a response

Background on MuckRock

By bluerasberry on 2014-01-04

Wikipedia could be used as a channel for conducting and managing information requests. This has not been done previously. I would like for it to be done in the future. This post is one of three in a series, and this one talks about Wikipedia and information requests. In other posts I present the idea of using Wikipedia as a channel for making information requests. and describe my own personal desire for a certain kind of medical information that I think about requesting through Wikipedia.

On 17 December Sue Gardner visited New York to receive a journalism award from the Knight Foundation. As part of her award, she was granted the opportunity to herself award $25,000 in Knight Foundation funds to the organization of her choice. She choose MuckRock, which is an organization which keeps infrastructure on their website for making information requests to the United States government.

The background to this is that the 1966 federal law called the Freedom of Information Act (FOIA) permits citizens to ask for public information from the United States government. In the 60s when this law was passed it had a different context; everyone assumed that the government would be the keeper of public information, and no one imagined that there could ever be a way to serve the entirety of all public information to all citizens on request. People like Carl Malamud with his Public.Resource.Org and Aaron Swartz with for example the PACER database have managed their own projects to free public information they wished to make more available; this is a movement and lots of people are thinking about this. This is only about giving the public online access to information which everyone – the public, government, and everyone – unanimously agrees ought to be available for free online for anyone.

Since the advent of Internet people began to make Freedom of Information requests online. For various reasons, the government’s online interface for making requests is difficult for average people to use. Most of the people historically who made requests through this system has some kind of specialized bureaucratic training, and when the request process was translated online, it had non-intuitive peculiarities distinct to the culture of the class of bureaucrats which formerly were the primary class of users operating the request process. MuckRock on their website set up a more user-friendly interface designed to assist any kind of person to make government requests for information under the Freedom of Information Act. They then invited anyone to make FOIA requests through their system.

MuckRock is doing a bit more than an interface supplement. Since every kind of request is different, when they receive a request through their queue, they have an actual human with specialized training and understanding review and reformat the request to conform to bureaucratic standards. They actually have not simplified the request process in total; rather, they are accepting low-quality and malformed requests, but using their own staff’s understanding to fix them, and then with that help the request becomes compliant with FOIA expectations.

Then MuckRock is doing some other interesting things. When they make requests, they make it themselves, and do not send it back to the requester for the requester to make the request. Since they are making the request themselves, they are managing it, so they get the reply. When they make the request they publish it on their website, and time stamp it, and publish any replies they get in a way threaded to the original request.

In summary, here is the old request process, and compare it with MuckRock’s new process:

Old way

An individual requester desires public government information
An individual requester learns the Freedom of Information Act request process
That requester alone makes a request according to complicated standards
In private correspondence, the requester mails a request to government agents for processing
In private correspondence, the government agent replies. The following may happen

The requester gets the information requested
The requester does not get the information requested – could there have been a mistake? What happened?
The requester does not get a reply – could there have been a mistake? What happened?

The requester gets some reply or non-reply. Though this information is public for anyone, the knowledge of the outcome and any information received is only held by the requester.

MuckRock way

An individual requester desires public government information
This person knows nothing in particular about anything, and at a minimum only needs the sort of skill set used to request information from a library
That requester alone makes a request for the information on MuckRock’s interface
MuckRock staff reform the request to comply with complicated Freedom of Information Act standards
MuckRock staff publish the request on their website with a timestamp, so that anyone can see the request and when it was made
The timestamped public request is sent to the government
Any reply which comes from the government is likewise timestamped and published in a thread which connects it with the original request. These things could happen:

The information requested is now available on the MuckRock website. Anyone who is searching for this information on the Internet can find it without making another FOIA request for it.
The request is denied. This is very interesting also, and it is of immense public benefit to be publicly aware that data does not exist or that it is not available.
The request gets no reply. Since the request was public and timestamped, getting no reply also becomes a public benefit, because it creates a tension in which government agencies will be more forthright in publicly denying requests than letting them sit in queue unprocessed indefinitely.

The requester and everyone else in the world have access to whatever reply or non-reply the request has gotten.

Of course, the goal of MuckRock is not to sort requests, but rather, to eventually call for free public access to all free public information. Nothing which MuckRock requests was ever intended to be private or barred from public access.

Posted in computer, non-profit, rights | Tagged MuckRock, request | Leave a response

the Devyani Khobragade incident

By bluerasberry on 2014-01-03

I am interested in India and this post contains a perspective on a story happening in India and Manhattan. There is a news-making diplomatic argument happening now and for some months, but it has gotten more tense lately because of many Indian politicians seeking to escalate it. I wanted to write about this because I find fault with both sides for not having better communication with the other. I see a lot of problems and not much good coming from this event, although I wish and hope that it leads to better communication in the future.

There is an Indian consul in Manhattan named Devyani Khobragade who recently had an argument with her domestic servant. The Devyani Khobragade incident has escalated into a major political row between India and the United States. What is interesting about this story to me is that the major media of neither country finds it favorable to tell much about the story at all. Both sides tell different parts, and both sides are obscuring most details of the version they want to tell, any reasonable explanation of the views of the other side, and what is happening in community conversation.

The story told in Indian mass media is that Devyani Khobragade is a respectable female government official. She brought a woman named Sangeeta Richard from India to be her domestic servant. By the laws of the United States the the servant was to be paid $9.75 per hour for 40 hours per week. In India sometimes laws like this are a formality which can be ignored, and privately Khobragade and Richard arranged a mutually agreeable work contract to replace the US law, and the servant gave her informed agreement of her own free will to waive US protections and accept Khobragade’s offer. Between November 2012 and June 2013 the servant worked for Khobragade, but then there was some disagreement between them because of the servant wanting to cancel her previous agreement with Khobragade and request more money for the same work. The servant went to the police, and for various reasons including racism and antagonism to Indian people in the United States, higher government officials became involved in supporting the servant to make trouble for Khobragade. For unnamed reasons the Americans decided to arrest Khobragade, but officially, they said that the reasons was visa fraud even though that was not really an issue. They arrested her at her daughter’s school to maximize the public shaming of her so as to make all other families with children at school shun Khobragade and her child for being among the social class which gets arrested. After arresting Khobragade, instead of processing her through the high-class arrest queue the Americans force her into the low-class arrest queue in order to further insult her. The arrest included unnecessary strip searching, body cavity searches, and her being put into a dirty jail with the drugs of society including drug users. The charges must be fake, because if they were really following the legal rules, they would have put her into the VIP jail and given her a VIP arrest. Indian politicians protested in the strongest ways and called for stronger government action. The US consul had been given special favors beyond the law and it had been expected that in return and for the sake of diplomacy, sometimes cultural differences must be overlooked for important people staying in other countries. If Khobragade is not vindicated from the charges and the shame then all of India is shamed.

The story told in American media is that Khobragade is an Indian consul who was underpaying her domestic worker Sangeeta Richard. After coming to the United States, somehow Richard came to talk to other other domestic workers, and came to know that there were unions through which such workers secure their rights. She asked for leave to go seek another job for more money, and rightly, Khobragade knew that Richard’s visa would not allow this as it was a diplomat’s entourage visa. Richard left the home anyway and sought work illegally. In response to this, Khobragade – very strangely by American standards – attempted to file a missing person report to the police to have the police return Richard to her. Of course in the United States employers do not have the right to file these kinds of reports on their workers, and if they do report missing workers, police are disallowed from reporting back the person’s whereabouts. Richard got a lawyer and demanded backpay by American law. Khobragade refused, citing that the prior agreement could override American law. When Richard pressed the issue, Khobragade had an arrest warrant for Richard issued in India and used her consular position to make an extradition request from India to the United States for Richard as a wanted criminal. When Richard did not appear, various forces put pressure on her husband and family in India to make her appear in the United States. At this point a serious misjudgement had been made, because top people in America have less power to stop bureaucratic processes than top people in India, and the extradition request went through its channels and a lot of unrelated offices were expecting a response. By United States standards, the extradition request was improperly formed and strange otherwise. Upon questioning Richard it was found that there was a claim of underpay, and what would immediately come to mind of any American hearing this situation is that a person was compelled to work below minimum wage for an employer who could deport an employee to jail, and that this situation seems like human trafficking or slavery. Also, because of Khobragade’s request, it would seem like any of the 100 Americans responsible for the case at this point would be personally supporting slavery if they were to arrest and deport Richard without her proper pay to be jailed in India. When Khobragade was arrested, it was by special police who arrest diplomatic workers. Khobragade was given every concession possible aligned with an arrest, but to an American who was arrested, I think they would only feel indignity if they feel like there was no cause for the arrest and if they were actually busted doing something suspect they would not make public statements about how dirty other inmates were. For someone who is accused of mistreating a servant insulting other lower classes, even prison populations, seems very inappropriate. When Indian officials sought to escalate the issue further and for Khobragade to be let free, I am sure the American response was just, “Why?”

Somehow I doubt that India even has special police who are employed only to arrest diplomats to India, and may not be expecting that such police are in place in the United States. Based on some of the news reactions, I think that many politicians commenting on this case also underestimate how much time and thought the United States puts into police actions. The United States may do a lot of bad things but when it needs to do so, offices in United States can follow establish workflows and follow designated processes.

This story fascinates me. I would like the result of it to be increased understanding between India and America. I wish that India could be positioned somehow to trade compassionate views with the United States and that this case could be framed as something other than America teaching India lessons. There are many injustices in the United States which never happen in India, and I wish that Indians had more voice to share what they do well. My sympathy is with Richard. It is unfortunate that some Indians feel that it is a fundamental right for them to have servants and for the servants to accept any kind of abuse. In India there is a concept of a “crorepati“, which conceptually is like a millionaire. Right now one crore rupees equals $160,000 USD. I think that anyone making even $10,000 annually in India must have house servants work for them at least several times a week. Anyone who makes $160,000 per year in India must have several house servants continually attend to them. In Manhattan it is unlikely that anyone making $160,000 would have a single full-time servant, because 40 hours a week * $10/hour * 52 weeks = $21,000 per year, or more than 10% of salary. America just is not designed to have full-time domestic help for anyone but the ultra rich. I suspect that most Indians, including the rich and middle class of all education levels and regardless of their travel experience, never imagine that outside India servants are uncommon and that few societies are set up to promote and sustain blatant hierarchy like India. There is hierarchy everywhere of course, and of course the United States has great disparities, but in the United States it simply is not as easy to recognize someone’s social class as it is in India; that is not good or bad but it is only a difference. I think that if the Indians who are in the media seeking to escalate tension were more aware of this then they would be more restrained in expecting to change American minds by protests. I regret that somehow that American diplomats were unable to do whatever necessary to resolve the conflict in a way fair to all involved, especially for the poor housekeeper’s sake.

Posted in New York City, rights, service industry, work | Tagged women's rights | 6 Responses

About Broadway

By bluerasberry on 2013-12-23

I did not have a clear idea of how Broadway worked before living in New York. I understand better now but still it is something more complicated than I expected.

Broadway refers to the live theatre culture in New York City. It is also the name of a street running diagonally south/north across the grid of Manhattan. Around 42nd Street and Broadway is Times Square, and all major theatres are there. When I first moved to New York I lived on Broadway at the north of Manhattan, so not all of Broadway the street is expensive. The Broadway part of the Theatre district is perhaps the most crowded place in New York. There are Broadway theatres and Off-Broadway. These designations refer to seating capacity; Broadway theatres can accommodate more than 500 and off-Broadway 100-499. I have read that there are 40 Broadway theatres, and most or all of these are in the Theatre District. I am looking at the Sunday edition of The New York Times. I count 55 shows running live right now, plus one big show soon to be released. I recognize the names of perhaps 40 of these and could give a description of 30 of them, so perhaps I have some familiarity with the theatre here but I would not say that I care too much. In addition to these shows I expect that smaller venues must be presenting another 30-40 shows only in Manhattan.

I am from Seattle. In Seattle, I think there are two theatres of a size equivalent to a Broadway theatre (the 5th Avenue Theatre and the Paramount, with the latter being a general performing arts space and not just for theatre), and I expect that at any time in Seattle, perhaps 3-4 shows would be performing in these and some smaller theatres which seat at least 100. I could be wrong about my numbers but this is my guess. Seattle has about 4 million people in its metropolitan area, as compared to New York City’s 20 million. New York is much bigger, but still, there is proportionately a lot more interest and infrastructure for this kind of culture in NYC than Seattle.

I am surprised about the amount of theatre here. It must mean that a lot of people are going to these shows because they operate on a commercial model, and these buildings are in Manhattan’s best real estate and it takes a lot of professional crew to maintain them. Something else surprising to me is how many bad shows there are. It takes months to prepare a show, and if a show has 10 actors, 10 singers, 10 dancers, 10 musicians, and 10 crew people – I cannot guess at how many people a musical would take, but somewhere around this number I expect – and then if at the end that show is found to be bad and does not sell tickets, then what kind of financial risks are there in starting new shows? Most shows are mediocre at best and typically bad. In the rest of the United States the biggest theatres often have traveling shows which formerly were on Broadway, but typically, only a good show would travel. Many shows die in New York.

I went to see Big Fish last week. It was a big musical, and tickets typically sold for $90 each, but I unexpectedly got 2 free tickets for buying a $100 membership in a club which allows people to buy tickets to poorly attended shows for $5. Big Fish was poorly attended and is about to close after about 100 shows. If there were were 5 shows a week, then I expect that means the show ran for 5-6 months, and no doubt to write a play, compose music, assign choreography, build a set, design costumes, rehearse, and everything else, it must have taken at least 6 months. The show was okay. I would not recommend it. There were plenty of empty seats in the big theatre. Did someone lose their investment on this? Did the script look as mediocre on paper as the play did when performed? Who funds these things? This is the usual fate of most Broadway shows, I think.

Many off-Broadway shows are not musicals and have small casts. It seems like New York hosts enough performers to staff every show, then many more performers who cannot get work or who are willing to perform for whatever compensation at off-off-Broadway shows. Some time ago I had gone to a piano bar in which anyone could play a piano there and anyone could sing along. It seemed like plenty of guys could play the piano and all of them could sing because they all had worked on Broadway. In Seattle I was often to find that everyone in a coffeehouse would be a science person. I am sure now that coffeehouses like this are not in Manhattan, but there certainly are places here in which everyone singing karaoke covers is more technically proficient than the original artists who performed the songs.

Lisa and Victoria were here at the end of October. On 30 October Lisa and I went to see Waiting for Godot with the famous actors Ian McKellen and Patrick Stewart as Vladimir and Estragon. I got discounted tickets presumably because the show was not so popular. I would expect that most people know this show because it is highly referenced in western culture, and also these are two actors currently at a sustained height in their Hollywood careers. Still, the theatre was not full. This play is intended to be a limited run because it is an old script and the actors are just doing this for fun.

Some other shows, like Phantom of the Opera, Book of Mormon, and Lion King have been running for years and will continue to run, playing I think 8 times a week. It surprises me that someone could want to be a performer, then they get to the height of their career and get a part in a Broadway show. Success for them would then be doing the same performance every night for many years, whether playing the same songs as a musician, acting the same roles, or whatever else. I would have expected that the best performers would want the most variety in their roles, but either they do not want this or the work structure has not way to permit this. Or maybe it does permit this.

Yesterday I was on the subway going downtown and these two Broadway boys were standing next to me talking about work. I listened in on their conversation without participating, and one was telling the other how to audition. From their conversation I gathered that both were early in their careers, both had studied music and dance for perhaps 10 years, both had done some Broadway shows but had never performed in whatever their ideal role was, and while both were optimistic about their prospects of getting a job, I was struck by how workers with so many years of training would need to continually circulate to find jobs. Apparently they both regularly got invitations to audition, but still, for the professional investment each of them had made I was struck by – what seemed to me and I could be completely misunderstanding the culture or their situation – their seeming to not be assured of employment.

I think I go see about a show a month. I would like to go more, perhaps, if I had time. Evidently archiving my thoughts on this blog seems more interesting to me than going to shows.

Posted in art, New York City | Tagged Broadway, theatre | Leave a response

Lee visits me in NYC

By bluerasberry on 2013-12-05

Lee visited me in New York from Thursday 21 November until Tuesday 3 December. I went to work on the weekdays except 27 and 28 November, which I had off for Thanksgiving. He had some time on his own. On the 23rd he went alone to the Natural History Museum. Together we went and saw a couple of plays, went to the Met, went to MoMA on a Friday night, and walked around the city.

It was really relaxing to have him here. Pat was gone on vacation to Peru so we had the place to ourselves. We talked a lot about the pet caretaking work he is doing. He volunteers with a network which places homeless pets with a particular focus on pets of the deceased. It seems that sometimes people die living only with their pet, and when this happens, the poor animal needs a new home. He also does petsitting and does foster care for animals in transition. From what he tells me some of the people in this line of work keep lots of animals, but for him, he rarely takes any home and then not for long. He always has his own two hamsters.

The day before he left Pat came home and they got to meet.

Posted in animal, New York City, tour | Tagged Lee | Leave a response

October visit to Seattle

By bluerasberry on 2013-10-16

On Friday 4 October I went to Seattle and returned Sunday 13 October. I wanted to visit friends and have coffee.

On 5 October Lee and I went to the zoo to visit animals. It felt good to go there but I was very tired. I missed Lee a lot. I went to Evan’s place that night. I miss him a lot too.

Sunday 6 October I had lunch with Jonathan in Capitol Hill. He had just finished his PhD and had begun working full time at the Wikimedia Foundation. He listened to my pitch about requesting informed consent documents and he told me that Aaron the data researcher had just gotten a job with the WMF. I told him that Aaron and I had been talking about the Research Committee and setting good practices for how research should happen on Wikipedia when it affects community volunteers and especially when it is conducted by visiting non-Wikipedian researchers. That night I met Mark and Kristina and we went to a religious service at the local chapter of the Ordo Templi Orientis.

Monday 7 I met a communications person at PATH in the morning. For some years I had been asking them to contribute to Wikipedia. They went through USD $330 million in revenue in 2012 on global health projects, but they have very little Internet presence. They sort of depend on public support for their projects, in the sense that they are supposed to partner with grassroots community groups when they go into a region and conduct health interventions, but in practice they are secretive about all their work in the way that lumbering international superpowers in plain sight are. They distribute some interesting health products for which I made Wikipedia articles and I had asked them for more information about these things include basic information explaining what they are above the level of a press release and for pictures to distribute. The fundamental problem with organizations is that they hate the idea of anyone discussing them if they are not present as the focus of discussion, so while they develop social media outreach strategies, they simultaneously do whatever they can to prevent people from talking about them and direct people to talk to them on new communication platforms but according to the old media model. I have heard this all before. I pitched their new media guy, showed him what I did to their Wikipedia article, talked to him about health traffic, and suggested to him as PATH’s introduction to new media they find a single promotional image which shows the world what they do and put a free license on it so that it could be distributed through Wikipedia and elsewhere. They could judge the impact of that photo, think about it for a few years, and then if they ever became ready to make a jump to new media (i.e. acknowledge the existence of the Internet) then they could have a base from which to consider precedent. The guy said that sounded reasonable and that he would see what he could do. I will write him again in a few months and ask him again for the picture.

I met Kelly at Roy Street Coffee in the evening. Kelly also heard me about about the informed consent document thing.

Tuesday 8 October I met with Christian at Microsoft for lunch. We talked for a while and he explained the concept of data centers to me, because he puts them together. Microsoft has given him a nice career and I wondered how my life might have been different if I had gotten a paying job rather than done volunteer work for years, and if I would have liked to have years of career money behind me. I am sure that I would – sometimes I think of starting a family and the way I imagine that it costs money. Christian was mentioning how he might like to go to school, and how he wanted to volunteer for things and get involved in issues that mattered to him. His financial success was attractive to me but I was repulsed by the thought in my own life of delaying school for work or of not being able to have free time for travels and reading when I was younger, and how much I would resent myself had I not had time to explore my own interests. Many times in India I met older people who had worked during their lives and were just now after a lifetime finding time to sort their thoughts by traveling and doing all the things I always wanted to do. I was also reminded of my dear Aunt Vicki who told me for ten years about how she looked forward to her retirement then watched herself die of cancer over the space of a year immediately after she retired and before she was able to enjoy all the money she had saved during her life. Of course there should be a balance between spending in the present and saving for the future, and perhaps I wish I had worked and saved more, but I cannot think of any way that I wasted my time in the past and even when I think of my failures I feel that I would feel even worse had I not attempted to do what I wanted to do despite the failure. It seemed to me that Christian was a little trapped. He said that if he could go to a non-profit organization which met his salary demands that he would, but he is an expert on managing the logistics of the physical design of data centers and he makes a lot of money doing that. It is inconceivable that he could make as much money in a non-profit sector using only his most valuable and most scarce expertise, and then also if he went into the areas of activism which most attracted him he would be on an experience level of someone from a technical professional background who has not had years of leisure and student time to think. He is very smart for sure, and I am in awe of his talent and the work he has done, but if I had gone his path and found the success he had, I think that I would feel a bit of regret for what I left behind and also feel bound to the paycheck because I am not sure that I could ever give that up to start volunteering. I really hope he could find an activist issue which could pay him what he wants, but otherwise, I feel like he could be happy at Microsoft indefinitely.

On the 9th I met Brian in the morning. We talked for hours about Open Science Federation, Open Knowledge Foundation, and Wikipedia. At 2pm I went back to Roy Street to meet Cyan. She and I talked about personal stuff. She is another one with a new PhD in something related to bioethics.

Thursday the 10th I went to Portland in the morning and met Rigel and talked about medical school and the informed consent thing, then later Aaron from Snowdrift. That night Aaron, Jason, and this OKF guy Tom Johnson who is a librarian and many other things related to information science. I stayed at Jason’s that night and finally got to meet his partner Adam. The next morning Jason and I met Roman for coffee and I talked with them both about Wikimedia Cascadia and Wikimedia LGBT.

On the 11th I met with Christie Koehler whom I had previously met through Sumana in Hong Kong at Wikimania. She gave me a tour of the Portland Mozilla office and we talked about her very successful community project, Open Source Bridge. This is a Portland conference for people who talk about open source software and politics around free culture. She explained parts of Mozilla’s business model and the market strategy for Firefox OS in the context of consumer rights in the marketplace. I offered that if she ever met anyone at Mozilla who would like to explore consumer issues with Consumer Reports then she should introduce them to me.

On Sunday 12th I went to Infocamp and presented Wikipedia and medicine. It was an unconference so everyone was supposed to pitch their talks to the audience so that everyone would come. I have no idea what I was doing when everyone was presenting their introductions – I should have been on stage and apparently they were calling looking for me, but the wind must have been calling me as I have no excuse at all for not being there and must have been nearby tripping on something. Jonathan introduced me in my absence and assured everyone that I would present, and he must have done a good job because people attended my presentation despite my rude lack of appearance. My talk went well. I did appear for that.

The next day I went back to New York. On my way out I went to Patrick’s place in Capitol Hill and went for breakfast with him, and he is still as charming forever. Previously he was studying geography in school and now he is studying political science, which seems right because what he really wants to do is wander around, chat people up, and introduce them to each other. His social fluency with so many circles of people always impresses me, as does the way he seems to know someone for every purpose. I try to be as positive as I can and I am happy with what I am able to do, but still I wish I could have more of the positivity of his perspective. He rode with me to the airport as he did on a previous visit I had to Seattle.

Seattle still seems to me more civilized than New York City.

Posted in clinical research, Open access, Portland, research, Seattle | Tagged Brian Glanz, Christian, Cyan, Evan, Jason, Jonathan, Kelly, Lee Haertel, Mark, meetup, PATH, Patrick, Roman | Leave a response