Day 2: Patient Generated Content

Refreshed and ready for Med 2.0 day two.  One of the topics that I’m finding most interesting here is the discussion about online patient support groups and patient generated content.

Yesterday, while presenting his study of people living with HIV/AIDS use of online support groups, Neil Coulson challenged the assumption that those receiving support online are feeling more supported, and thus experiencing better health outcomes.  Although he mentioned that there might be some difficulty with his study methods, his results indicated that there didn’t seem to be much difference between people who were frequent, infrequent or non users.

On the other hand, though, this morning Joanne Mayoh made a case for patient generated content, citing Darwikinism (the rigourous patrol of content by online peers and experts) as the main reason to trust it.

I realize that I can sometimes judge technologies based on the theory, rather than reality.  Closer looks is what this conference is all about.

Day One: Medicine 2.0 Congress

First day of Medicine 2.0 today.  In general, the conference hasn’t focused on my global health and tech interests but is looking at practical solutions for Western health issues.  It was probably naive of me, but I didn’t expect such an academic focus: the presenters keep reminding us that they’re not tech people, but rather sociologists, anthropologists and epidemiologists.  In my head, technology is this explosive, creative, exciting thing that constantly surprises and challenges me.  The approaches highlighted here are pragmatic rather than mindblowing.  So I’m missing the global health elements, but learning a lot about practical approaches to public health and physician support online.

I always need a few days to process, but for now here are some links:

Jason Bonander from the Center for Disease Control presented on his research into how people are presenting their health behaviours and risks online by collecting data from 100 open Myspace profiles (eg, people who identified their body type or who could be seen smoking in their profile pictures).  His view seems to be that people are already sharing health data online — lets build widgits to channel this info into prevention.  He also mentioned a project called RiskBot that seems very interesting but I can’t find any more online…

Canadian Medical Association’s online initiatives MyDoctor.ca and the just-launched Asklepios offer services for Canadian physicians including professional networking and web development.  The patient platforms are geared towards chronic disease monitoring and electronic health records.

OntarioMD offers similar and very responsive sites for Ontario doctors.  They have broken things down into three work modes and three corresponding sites: clinical, practice management and collaboration, acknowledging that physicians are spending significant amounts of time outside of clinical activities.

Bloggers Jen McCabe Gorman and Berci Mesko presented as well, though I only caught the end of the presentation.

More tomorrow!

AIDS 2006 Toronto –> AIDS 2008 Mexico City

One of the questions that I keep getting asked is how the most recent AIDS conference was from the last one. I met some people at the conference who had been to the last 7 or 8, so they’d be better at describing the conference’s evolution, but here are a few thoughts from me.

First of all, I was a very different participant in each. In 2006 in Toronto I helped Canadian Physicians for Aid and Relief with their booth in the Global Village but didn’t have access to the conference sessions. Elbow to elbow with other NGOs and activist organizations, I remember learning exponentially about the different aspects of the pandemic, about just how many social groups it affects. I also felt a lot of solidarity with the other civil society groups, the positive result of so many people in one spot trying to make change.

At Mexico City this month, my press pass allowed me beyond the Global Village and into the Conference itself. Being media made the experience totally different adding a distance between me and what was going on. Where the Global Village was the activism, the Conference was the institution. Its academics and international bureaucrats present themselves as the pragmatists, focused on treatment and cures as well as cost-effectiveness and scale up. I felt passive in sessions and plenaries, excited to hear the latest research and initiatives, but without the action and momentum that I’d felt in Toronto.

Where the Conference and the Global Village seemed to meet was on the topic of prevention. With much hype the Lancet released its first series on prevention, and with it the AIDS institution acknowledged that there won’t be a magic bullet response to the pandemic. At the last conference, it seemed as though universal fixes were still on the agenda. While vaccine and microbicide research continues, the “softer” approach of structural and behavioural prevention approaches were admitted into the private club of institutional solutions to AIDS.

To some, the fact that research hasn’t resulted in a cure or vaccine and that the battle against AIDS is going to require a combination of different approaches is disheartening. But the overall feeling of the conference was one of hope, of small successes, of understanding next steps.

International Development Undergraduates, writing.

The Undercurrent Canadian Undergraduate Journal of Development Studies publishes open source academic papers by Canada’s International Development undergrads, covering topics from indigenous land rights to microcredit to media representation of the developing world.

Undercurrent aims to:

• To raise the profile of undergraduate IDS
• To establish a venue in which young scholars may undergo constructive review and have work published
• To provide the best examples of work currently being done in undergraduate IDS programmes in Canada
• To stimulate creative scholarship, dialogue and debate about the theory and practice of development
• To provide a learning opportunity for contributors, staff and readers
• And to help students meaningfully participate in broader exchanges within IDS.

And I’ve just joined the team as the Editor-In-Chief! Look out for the December issue that we’re working on right now.

In other news, I’m headed to Medicine 2.0 at the beginning of September.  So excited to connect with people who are using the internet to give people more power over their own health, to manage health data, to work on prevention.  The final program came out yesterday and there doesn’t seem to have a lot of global health stuff, but I’m hoping to be pleasantly surprised!

Make Art not AIDS

As I mentioned in a previous post, there seemed to be a lot of visual arts components of the AIDS conference, whether it was aimed at raising awareness or used as an income generating activity for people living with AIDS.

My favourite!

Graffiti ribbon in the Youth Booth, part of the Global Village

The Empower project’s Kumjing dolls from Thailand traveled to Mexico to raise awareness of migrant workers.

Outside of the conference, at the cultural centre in Zocalo, there was a great exhibit on migration. Migration is a significant factor in the spread of AIDS.

The centre also exhibited a public health project for rural women — participants were given a disease to study and then had to make a larger-than-life crafty representation.

The Bead for Life booth in the Global Village had bustling sales of their paper necklaces made by poor women in Uganda.

Fancy Stitch is another income generating project for low income women in South Africa with amazing AIDS-based needle work. It doesn’t look like you can buy these ones, but they’ve got other products for sale online.

One of the friends I made a the conference from the large Canadian contingent works on Body Mapping where HIV positive people use self portraits to explore their status.

Mobile Projects at the International AIDS Conference

More on the Reaching Millions: Youth, AIDS and the Digital Age session for MobileActive.org.

AIDS 2008: Big Names or Big Ideas?

Here at the AIDS Conference, with sessions for more than 20,000 people, attendees have to choose their time wisely. I find myself often wishing that I could be in two places at once, and struggling to decide whether I should go to the sessions on topics I know nothing about, or those that I’ve already got an interest in. Should I go for the big names or the niche experts or the hands-on activists? In keeping with the dominant theme at the conference, I’m taking a combination approach.

Monday started with the big names, including a session with Bill Clinton, full of metaphors about us foot soldiers having to slay the dragon of AIDS in the absence of a Saint George equivalent. Those who know me will understand that I like anyone who makes a Saint analogy. The content was fairly rhetorical, and could have all been found on the Clinton Foundation website. In the stereotypical American way the former president ended his speech with a “God Bless You!”

In the afternoon there was a great session called “Reaching Millions: HIV, Youth and the Digital Age”. The head of Voxiva spoke about a project in Rwanda called TracNet that helps the Ministry of health use mobile phones to collect data on ARV roll-out and a new partnership with Carso Institute in Mexico to support people living with HIV/AIDS using mobile phones (for example, daily dose reminders). TakingITGlobal (who does the Youth Force site for the conference) and the Global Youth Coalition HIV/AIDS spoke about their social networks that connect and provide information for young activists. A young woman called Thembi from Cape Town presented clips from her audio journal that track her journey through AIDS diagnosis and living positively which are available at www.aidsdiary.org. We also heard from Punto J, a dynamic site in South America to help youth access info about HIV/AIDS and sexuality, with lots of comics, etc. Finally, loveLife from South Africa’s new mobile phone project (very low bandwidth) was presented as an alternative to web-based engagement in the face of SA’s high mobile phone use among youth (74 percent own a mobile) versus internet (6 percent of youth access the internet regularly).

On a personal level, attendance at this conference is like stumbling upon that perfect article for your research that you didn’t even know you needed, but making the transition from learning to action is the hard part. I keep on thinking, “What now, what next?”

(I have been recording most sessions so I will have audio files if anyone wants them)

AIDS 2008 Day One: Crafts for AIDS

First impressions:

 So excited to be a part of this conference.  Like two years ago, its just AMAZING to have so many people working for change in one spot.  Getting to know the four activists in our little group at the hostel, and so excited to learn about each of their projects (body mapping, harm reduction, youth and community health, and the internet…more later?).  We made it as far as the Global Village and checked out the various booths.  The craft-based approach to awareness and income generation caught my eye the most, including a project that aims to put a human face to migration statistics by creating papier mache migrants (ultra visible).  Their dolls even have passports.  I am still not quite sure of the goal/outcome, but the brochure is in my bag along with tons of other things to read.

We have been insipred to have a collaborative craft for a cause for event…stay tuned!

Preventing HIV/AIDS through Microeconomic Development

HIV/AIDS in sub-Saharan Africa is increasingly understood as a disease of poverty, inequality and marginalization.  In this conceptualization, some groups and individuals are more at risk for infection than others as a result of their place in an “environment of risk” that affects vulnerability beyond individual behavior.

This study assesses the impact of grassroots microeconomic development projects on reducing the environment of risk for adolescent orphans living in slum areas of Addis Ababa, Ethiopia. It looks at a group of HIV-affected adolescents who inhabit multiple vulnerabilities as a result of their age, socio-economic status, proximity to HIV/AIDS, and often their gender. Through the CAPAIDS Safe Livelihoods project, this group received vocational training and micro-finance to help reduce their vulnerability. This case study suggests that these types of projects can increase income and income security, provide alternatives to risky employment, decrease dependency, reduce community stigma, improve social networks, and raise self-esteem for participants. As a result, microeconomic empowerment is an important new tool in the battle against HIV/AIDS.

Link to full article based on my thesis research in Ethiopia here (6 pages).

WikiProject: International Development

Lately I’ve been getting really into how people are using Web 2.0 for global change.  I’ve been learning more about sites and projects from socially-conscious social networks (like TakingITGlobal, Change.org, and Razoo) to mashups for humanitarian crisis reporting (like Ushahidi and Sokwanele) to global blogging hubs (like Global Voices).

Today, while trying to find examples of international development academics who are using web 2.0 tools to gather research data, I came across this wikiproject on International Development.  At the moment, its more of an idea for a project than an actual project, but it aims to create “a powerful, practical and empowering resource which people everywhere can use to improve their own lives. Other people can also improve their understanding, whether they are involved in aid and development, or in politics, or in the broader public, thus raising awareness and understanding of the issues.”  The wiki nature of the project means that the template is there, but its still got to be filled in.  There’s a to-do list that users (ie, you and me) can take on parts of until the project is complete.  I’ve never contributed to a wiki but perhaps I might start.

In other news, I’m headed to the XVII International AIDS Conference in Mexico City this August and will be posting here during and after.  I was able to attend the last conference’s periphery (the Global Village) but not the sessions, so I’m very excited!