By bluerasberry on 2009-02-22
Twice a year our HVTU CAB (HIV Vaccine Trials Unit Community Advisory Board) meets for fun and to review our mission as a CAB. Part of what we do as a CAB is review the development of HIV vaccine research protocols to the extent that they involve the general public. Whatever information the general public should have access to when they are considering volunteering to participate in HIV vaccine research, we also consider and advise about whether it contains the information necessary for a person to make an informed decision as to whether to participate in the experiment.
To me, it seems like a volunteer CAB should be a social institution integrated into any kind of human research, but in fact most research rarely uses them. A CAB is distinct from an IRB (Institutional Review Board), which is a professional set of reviewers who ensure that the experiment complies with legal standards. Legal standards are not necessarily comprehensible to all persons who might be legally fit to sign their consent to research. Also, what is legal may not be ethical; persons who join clinical research often come from vulnerable populations and only community members who are more disconnected from the research motives can judge whether clinicians are asking too much of their test subjects. Every member of any CAB would have their own explanations of its need for existence; I have others but the ones I stated come to mind first.
When I first joined this CAB in summer of 2007 I did not know much about research, but now I am beginning to appreciate just how powerful of a social investment it is to foster a connection between community members and researchers. The researchers have a list of demands for data – typically they have a drug and they want someone to take their drug and then provide blood samples periodically thereafter. The researchers typically have no contact with the people who provide the blood samples. There is a study recruitment team that encourages people to participate in the study. Ideally, these people would understand the research, but in practice, the skill set that enables one person to convince another to volunteer to take experimental drugs is unrelated to those skills that invest a person with understanding of the research. I happen to think that our recruiters understand the research, but I have seen situations where corporations have trained their recruiters to use sales technique to reel “volunteers” in and rewarded their recruiters with financial bonuses for high draw rates. Again, FHCRC does not do that, but some places do, and although I do not think this is inherently bad practice, the added complexity does increase the likelihood of corruption in the system. In any system that I can imagine, a CAB could do well to advocate for the community with the major drawbacks being the need to attract and train CAB members and the need for researchers to take the CAB’s advice seriously. I am happy with the status of the CAB that I am in because I feel we make a difference with minimal effort from our end.
This CAB retreat we just had followed a simple but pragmatic formula. The first item on the agenda is coffee, then a review of our relationship between the CAB (us) and the HVTN (the organization which we review), then training about how to do our work, and ending with a review of HIV epidemiology, which for most of us the topic that caused us to get involved in the CAB. Looking at this agenda now after the event is over it seems obvious that we should talk about these things and to do things like this. CAB participation is a 4-6 hour per month commitment; what else should a volunteer organization like us do?
I am blogging about this for others who might be interested to learn what it means to review research, and how decisions get made in high-budget, high-profile multinational research projects. In different places, a group of community members with no particular academic expertise have to sit in a room and come to understand the nature of the recruitment process for the research study, and they have to give opinions about the fairness of it all. This is a fundamental part of citizenship in an information-based economy and I am not sure that this important practice is undertaken widely enough. I feel like it is important that I do my work for this CAB that I am in right now, but also in the future, I would like to institute other CABS for other kinds of research projects. In particular, as I get more established with my research in India, I would like to set a precedent of having it reviewed by a CAB in each community where the research happens.
Posted in education, HIV, research, rights | Tagged CAB, ethics
By bluerasberry on 2009-02-08
I had been thinking about applying for graduate school for a long time, but I decided I would not apply for admission in fall of 2009. I started questioning myself when I asked for a recommendation from a mentor of mine and he replied by asking me some hard questions about my goals.
I’ve got this research job right now that I like and that is teaching me; I am not sure that I want to give this up, especially when it can lead me into other similar work, and that’s why I wanted to go to graduate school anyway. Also I have a good Hindi tutor and if I start graduate studies, I know that my less-academic studies will have to stop. I spend a lot of my free time trying to learn to use various computer applications; this is time consuming because it is self-taught and cannot be streamlined, and definitely this kind of learning would have to stop for schoolwork. On the other hand, if I learn more about computer work, that would be a huge benefit for me for the rest of my life. I am continually having major disruptive problems because of my inability to manage and process data.
There is a common theme that is giving me trouble; I am finding a need to collect videos, pictures, and text descriptions of the same, edit them slightly, and post them online in a way that they can be manipulated. Flickr and youtube work wonderfully, but I really would like to be able to host this info on my own server. I see a huge demand for large collections of this kind of data, and I know that I can provide it because Nandan can hire Indian labor to collect it.
For example, there’s the public health survey work that I do. There’s this other guy who wants some public service announcement videos made in various languages. I have another friend who needs photos for aesthetic reasons. I have been talking to this Australian sex worker who is on board to work with Nandan and produce whatever crazy things she produces. I want to start using GPS to create a comprehensive map of where certain plants and animals can be found. It boggles me to think that I can get involved in so many varied projects, and from my perspective, the skill set required to make all these things happens depends on my being proficient in the same user-level technology.
I am continually enthralled with the power of the internet and the ways in which it disrupts previous social orders. I feel so fortunate to be alive at this point in history; blogging makes my head swim even when I am just rambling.
Posted in personal
By bluerasberry on 2009-01-27
Today is Rabbit Hole Day because of Lewis Carroll’s birthday. To celebrate this holiday one is supposed to write on a topic about which one does not usually write, thus jumping into a rabbit hole.
The first time I read Alice in Wonderland and Through the Looking Glass I was about 14. For whatever reason, I could not come up with about $25 to buy a library card, so there was this period when I would bike a couple of miles to the library, and read for a while, then go home without having the option to get books. The problem was that even though I lived two miles away it was outside the area that paid tax to the library, so I had to pay to check out books. Small towns are so weird for making it hard for kids to read; it was a thrill when I found that Seattle would give me a library card as soon as I arrived here, despite not establishing residency or any of the other dumb things that I could not do where I grew up.
Anyway, I read this book and I loved it. I started tripping hard on every part of it, like trying to find meaning in it all. I reviewed it repeatedly like kids do with their media and about this time, internet had become available. When I got my first computer one of the first things that I remember doing is finding an online text of Alice and thinking how wonderful it was that books could be online. I also remember having questions about the meaning of the book, and being able to search and find relevant information. Besides downloading advance copies of the Harry Potter books and certain textbooks that I could not afford, I never really took to reading online, but the Alice books to me are connected with my realization of how different the internet made my prospects for study.
I still biked to the library just to hang out and study, but I was less jealous of their outdated, underfunded collection when I had dial-up at home.
Posted in education | Tagged Rabbit Hole Day
By bluerasberry on 2009-01-25
Last night I went to Cocoon House in Everett and met with Marty Arellano, the director of youth operations there. Cocoon House is a non-profit organization that provides care – particularly housing – to homeless persons under age 18. I had met Marty a few months ago when the PI (Janet Walthew) for the study I am doing introduced me to her at a community forum to discuss increasing county funding for drug court programs. I became more interested in meeting her lately, because I needed to learn more about non-profit management and funding.
We spent over an hour together as she showed me around their main complex and took me to her office to chat and let me ask questions. I was interested in the management of the organization. Her division – youth operations – executes the primary mission of cocoon house – serving youth. Other divisions include administration and development (which includes research and fund-raising). Their primary complex is a converted motel with rooms for 16 kids. They have 6 full-time case managers who work in shifts so that always there are case managers on site. They keep two full-time masters-level counselors, have a cook who is also their gardener, and they have an Americorps worker who arranges for other volunteers to provide for them.
Each kid works one-on-one with a case manager to set some personal goals, with two goals being to get education (usually at Everett High School) and get a job. There are four rules for the complex – curfew, no fighting, no drugs, and no sex. The kids divide maintenance duties so that they learn self-care. When they turn 18 then they have to leave unless they are finishing high school, but in any case Cocoon House has transitional housing elsewhere for kids 18-21. Ideally, the counselors will be able to meet with the kids’ parents or family and work out an arrangement for the child to return home, and usually this can happen, but the door stay open for kids who want to leave at any time and who want to return at any time.
They have four full-time outreach workers in different districts who recruit kids to come use services. Besides the Cocoon House complex, they also have drop-in centers and temporary shelters for youth who do not need permanent housing.
Marty told me that they get funding from about 25 different agencies, accounting for 75% of their funding. These agencies include mostly government sources, but non-profit and commercial entities also contribute. In all cases, agencies require huge data output about where funding goes, and with their relatively small Cocoon House organization getting funding from so many organizations with so many different reporting requirements, the net result is that they collect a broad range of survey data about many aspects of operation. The remainder of their funding comes through fund-raising efforts from private sources.
I started asking her questions about how she collects this data, because I am so fond of survey information. She told me that the county licenses data input software and gets assigned a set of questions to answer. Marty used to work in some county agency – I remarked that I thought it was unusual for someone to have a career change from supervising fund distribution to non-profits to directing a specific non-profit, and she said that it was unusual. She worked her way up the government hierarchy to be at the highest level of her interest, and I think it is very fortunate for Cocoon House to have such an insider working for them. I felt tickled to meet her myself, because I know how often that unqualified persons with spunk and a dream found non-profits and then set precedent for a legacy of incompetence in management. Surely Marty could make a lot more money elsewhere, but how fortunate for the kids that she took interest in being at Cocoon House.
Anyway, Marty is a major resource for county connections. She told me there was a demographer I should meet – I love it when people tell me they know a demographer I should meet – and she gave me his name as Bo Tunestam, office phone to the general secretary is 425.388.7200. She also told me to read this book called Street Dependent Youth by Jerry Fest, a social worker in Oregon. She said that I could talk about fundraising with their Americorps worker, Danielle Gadek at 425.259.5802×109. Finally she said that Oklahoma University sets a lot of the standards they have to meet, and that I should check out their Runaway and Homeless Youth website or write them about training at rhytraining@ou.edu.
Posted in education, non-profit | Tagged Americorps, homeless, youth, youth rights
By bluerasberry on 2009-01-13
I went to a meeting organized by the Washington Department of Health (DoH) to talk about proposed changes to the Washington Administrative Code (WAC). In Washington State (America) there is the Revised Code of Washington (RCW) which is a compilation of all the state laws in force. These laws were set in place at the state’s founding and the compilation can only be changed by a vote. The WAC is a set of rules that determine how the RCWs will be upheld. These are changed without a vote, generally by forming a committee which discusses a change and comes to a consensus.
The committee who was arranging these changes came to the Seattle Central Community College to get input about the changes they were proposing. The basis for the change was the CDC’s “Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Healthcare Settings,” so what they were trying to do was make the state administrative code more closely match the national standards.
To summarize, the proposed changes would make it easier for doctors to test people for HIV. As the law stands now, healthcare providers have an obligation to assume that their clients want a lot of privacy when deciding whether to test them for diseases. Because they make this assumption, they often do not do HIV testing unless a person asks for it. If doctors could assume that – for example – a person who comes in and says that they want a general checkup and testing for all common diseases will want to be tested for HIV as a part of this general exam, then more people will be tested. However, community members are often concerned about the meaning of mandatory reporting of positive HIV results to the Department of Health, so these proposed changes will conflict with some people’s personal rights. I do not currently have an opinion on this issue because it seems that both sides make convincing arguments, and because this debate is new to me.
There were 20 people at this meeting in addition to the DoH committee. I was the only person who was attending as a community member and not representing some agency. Most people were healthcare workers, and they all seemed in favor of removing restrictions on testing. The WAC contains rules that doctors must provide information about testing before testing, and their argument was that anytime a doctor has to do extra work it is more likely that he will avoid that work. So doctors do not recommend HIV testing because they do not have time to document that they provided the person with information, and furthermore some people do not want HIV testing because of the mandatory reporting that doctors do to the government whenever they find someone with HIV. The counterargument to these objections is that HIV testing needs to done to prevent the spread of HIV.
It seems to me that the best solution would be to remove barriers that deter medical providers from routinely conducting HIV testing on all their clients, however, there should be increased barriers on a person’s rights to keep their HIV status confidential after testing. I see nothing wrong with HIV status being reported to serve public health interests, but I can also imagine scenarios when a person’s rights could be harmed if non-public health interests had access to these records. I think that if there were a national database for collecting and protecting HIV status then that would be best, but a project of that scale would be as complicated as any national ID program and people would demand the same level of confidentiality as they would for their social security numbers or any similar tracking system.
Posted in HIV, rights, Seattle | Tagged public health
By bluerasberry on 2009-01-01
In my previous post I showed a picture of the view of Seattle to the south of where I live. Immediately north of where I live is what used to be a house where a lot of kids met until about three months ago, when this house was closed by the landlord and all the tenants were evicted. After that the house was used as a squat. Some time recently the police evicted the illegal residents and today they and a lot of other homeless kids were protesting not being allowed to live in the house.
The police were saying that the kids have no legal right to be in the house, and therefore they had no right to live there. This is true.
The kids were saying that they were not hurting anything by living in the house as the house is slated to be destroyed anyway. As it is, they are homeless and need to live somewhere. If they get sick from living in the snow then they will be miserable themselves and cost money to the city in healthcare, and they are just demanding access to a way to satisfy the basic human need for shelter. Their flyer referenced the current 700 billion dollar government gift to the wealthiest Americans.
homeless boy busted for dog
One boy had a dog and his dog defecated on the rainy road. There were about fifty kids marching a route between University Way (the business street of the area) and the squat. They were marching on the road with a police escort so this was not a typical walkway, and as soon as I saw the dog do his business I wondered if the police would try to hassle him for dirtying the tires of the cars that would surely drive over the mess. I followed the group and at one point it split with about ten kids leaving the main group. One of those ten was the boy with the dog, and the police stopped him and gave him a ticket. We all just stood by and watched. The police called the boy’s name in and the dispatcher said that he had a warrant for his arrest, but the police decided not to take him in. I do not think the police declined to arrest him because of any pressure from the group, but just because there is no sense in arresting a mostly non-disruptive homeless person for a minor charge.
It’s too bad he got a fine. And it’s really a shame that with today being a holiday, at least 15 marked police cars, 5 unmarked ones, and fifty police officers had to escort this pitiful group of homeless youth to make sure that they did not try to go into the house and rest. I would guess that with today being a holiday the police got double pay, and then also probably they were called in for overtime for this special event. All those kids wanted was a mat on the floor and a blanket so that they could sleep and not get snow or freezing rain on them. In my opinion, it would have been better for the city to rent a warehouse for them to sleep in for just this one cold month than to have police form a human barrier around an owner-abandoned eyesore of a building.
The kids were organized through Team Victory Anarchist Collective.
Posted in health, presentation, Seattle | Tagged homeless, police, protest, youth
By bluerasberry on 2008-12-20
7th and 45th in U-district...
I live at 7th and 45th in u-district and this picture was taken from the 10th floor of the apartments at the northwest of that intersection. I could not go to work today because of the snow.
In the top right of the picture is Queen Anne hill; just to the right of the top center is the Space Needle; that’s Interstate 5 cutting across the picture and leading to and from downtown Seattle in the top left; down the picture from downtown is the foot of the Ship Canal Bridge which is between U-district and Capitol Hill. There are two buildings on the left foot of that bridge, and in front of the nearer building is my small house which can only been seen as a roof with snow on it. In the bottom center of the picture is the bus stop I take to commute north to Everett for work.
Posted in Seattle | Tagged landscape
By bluerasberry on 2008-12-13
Last night I went to see a screening of the 1929 Phantom of the Opera accompanied by live music. Here is the blurb:
Phantom of the Opera,
film with live accompaniment
presented by Aphonia Recordings
The 1929 classic silent film “Phantom of the Opera,” starring Lon Cheney (man of 1000 faces) and featuring a live soundtrack.
Rachel Carns – Piano/Organ
Heather Hall – electronics/misc percussion
Derek M. Johnson – acoustic/electric cello
Daniel Buscher – flute/misc percussion
This was put on by a small art room called Gallery 1412 in Capitol Hill. Aside from getting a grand piano through single doors it was a low budget production. I am going to have to go back sometime and see if that piano stays there, because the gallery is obviously a venture of love and not money. It looks like they just moved into a vacant storefront and started doing art without wiring, painting, or lighting, or even sweeping the place.
There where about 60 people in the place and most of us had folding chairs. The person doing drums was in front of the projector, which was resting on the original box in which it was shipped. Her head sometimes got in the way of the video, which for me showed that they were sharp enough to make a judgment call to get the movie started on time rather than make everything perfect. For me, it made the experience more real and I did not mind at all, even though I would have if it had been in a more institutionalized gallery. The girl at the piano and keyboards seemed to have trouble lighting her music sheets in the dark room, and again, I thought it was cool that she could navigate with rent sails. I had never before heard flute with drum and bass, and the cellist’s bow was inches from the front row. It was crowded.
Lee is always clever about taking initiative in crowds. It was hot in the room, and everyone was uncomfortable, and no one was doing anything about it, and obviously the staff were more artists than management. So Lee went and opened the vent, and instantly the cold night air made the room pleasant. It is strange how a group of people can come together and always assume that someone else will take care of details, even though anyone could have fixed the problem. It was an interesting vent, also. It was a 12-inch space above and as wide as the door, and it was horizontally hinged on the bottom with a chain on the top to limit its drop-down to 60 degrees.
The event was using a cheap project to show the movie on a white bedsheet tacked to the wall. They wrote a new soundtrack, like for example in the masque at the opera after the Phantom lets girl-o out of the basement, they replaced the French ballroom music with techno, and again, I had never heard a flute accompany techno before.
It was a donation event and the sign said sliding scale, 5-15 requested. I have been in Seattle since 2001 now and it still thrills me to know that I live in a place that can sustain independently-produced shows like this; it is so much more fun to go to things like this than corporate ideals of fun.
Posted in art | Tagged ghost, opera, silent movie
By bluerasberry on 2008-11-23
This week I went to a conference for Fred Hutch’s HIV Vaccine Trials Network (HVTN). The network has been slow with bringing in new research for the past year because of the disappointing results in the STEP trial and the lack of funding in HIV issues which has been characteristic of the Bush administration. Time has passed since that last troublesome trial, plus the Obama presidency has promised more funding for this kind of work, and for Seattle at least, our node has partnered with another clinical trials network that tests HIV microbicides, so likely busier times are coming.
I met this guy from the San Francisco CAB named Steve Oxendine. He told me about the Legacy Project, which is an effort to get African Americans more involved in HIV issues. Talking to him made me realize how white our group is.
I went to the presentation for laymen and met this man named Dr. Spies, who works at Fred Hutchinson. He cleared up a lot of confusion I had about the mechanism by means of which the experimenters are expecting an HIV vaccine to work and how developing an HIV vaccine will be different from developing other vaccines. I want to make time to write him and ask him more, even though we talked for quite a while. Dr. Spies asked me for my personal opinion about this new trial which is similar to another one which we did. I had read so much about the researchers being interested in public opinion on this, but it made it more real to get confronted by one of the actual researchers looking for a clue as to whether his field was getting community support. I did not give him a straight answer because I was thinking I wanted to talk to the CAB.
I met this lab guy from the Hutch named Barry Robinson. He invited me to come take a tour of his lab and see what equipment they use to get data during the trials we talk about. I will bring this up at the CAB meeting this week and see if anyone else wants to go with me, even though I probably will not have time until about February.
Ian always has a lot of say and he lets me ask lots of questions in a hurry, stepping on his words and driving the conversation without hearing him out. It just seems natural to do this with him because he doesn’t mind at all, even though I would not do that with most people. He and I had a short talk about various trials and I think we are going to talk about it again at the meeting tomorrow. He brought up that one of the people asking a rather strange question (“How do you decide where to build a church?”) to a preacher from Boston who had come to talk about mobilizing his church community to fight homophobia and promote HIV awareness was the global CAB rep, Rick Church in the NYC CAB. I had wanted to meet this guy, and Ian pointed him out to me. I cut Ian off and ran to meet Rick, and again I am sure that Ian didn’t mind.
After meeting Rick my impression was that he was the kind of person who could deeply sympathize when he wanted to and not care when he had other things on his mind. It just surprised me that someone at a conference like this would reframe the issue of how to decide which populations get public health aid as being analogous to building a church, even though of course that is exactly what the issue is. We only talked for a few minutes and he told me I should start getting on the global CAB calls, so I will talk to Ian about that (he is our site g-cab rep).
Coincidentally, I had just meet Ian a few days before the conference at an open house for a place that takes in sick homeless kids for the night. I went there to try to get involved, and Ian was there telling me that he is on one of their organizing committees. I had no idea because it seems unrelated to his work. I talked some more to the people there and found out that its funding comes from the UW and that this guy named Caleb Banta-Green founded the project, and he is in the Alcohol and Drug Abuse Institute, which is the office that manages my project. I asked Sharon and Betsy (my project directors) if they knew they guy, and they said he was in their office.
This homeless kid program is called MedRest, and it is a UW faculty position so if I got it then I would just have to be on call to show up if anyone was sick (2 nights a month max). It is a few blocks from my house, so no problem for me to do this. The big benefit is that I would be UW faculty, so I would have library and journal access among other small things that go to people at universities. I really miss that library, but I would want to join MedRest just for fun even if it was a volunteer position.
Posted in health, HIV, non-profit, presentation, Seattle | Tagged conference, HVTN, jargon, MedRest, microbicide, vaccine
By bluerasberry on 2008-11-02
I met this Indian at a coffeeshop the other day. I was practicing Hindi writing (my tutor Ali at http://www.zabaan.com/ is awesome!) and he came up to me and asked me if I spoke Hindi. I answered him in Hindi and asked him if he spoke Hindi, but he just said he did not speak any. His name was Kheer (or something sounding like that) and he said that he wanted to learn Hindi someday, and that his parents spoke Hindi, and that he goes to India to see relatives at least every other year. He said that he was getting his master’s degree in computer science at the university.
I asked him where in India his family was from and he said Gujarat. He asked me if it was hard to write Hindi and I told him no, and asked him if Gujarati language uses the same characters as Hindi. He said that he did not know but he thought so. I looked this up later and Gujarati has its own written language, and it does not seem to have much in common with Hindi.
Situations like this happen to me regularly. I often meet Indian people my age, and I almost always know more about India than they do. In India, lots of Indians come up to me because they can speak English but in America, Indians come up to me because I speak more Hindi than they do.
Posted in education, encounter, India, Seattle | Tagged coffee, Hindi
