Women’s Xchange Spring Event 2014 – CBR Panel, CHIWOS

Women’s Xchange Spring Event 2014 – CBR Panel, CHIWOS


the first 2 were a bit more auditory the second 2 will be a bit more visual keep to keep way okay so this is the title of our study, CHIWOS, the Canadian HIV women’s sexual and reproductive health
cohort study and we use a women center centered
community-based research model my name’s Mona Loutfy I’m an infectious disease specialist and
I work in Toronto and eighty percent of my patients are
women living with HIV I’m a clinical researcher at Women’s
College Hospital and Women’s College Research Institute
and I’d do research 1 topics that are most
important to my patients and based on that I
founded you the women and HIV research program at Women’s College Research Institute CHIWOS is a 5 year multi-site prospective cohort study that’s rolling out in
British Columbia Ontario, and Quebec. it’s funded thanks it’s funded by the at by CIHR at we received at close to 1.2 million
dollars at from a CIHR and and I’m gonna that and at the and I’m gonna talk about
one of the major challenges at I’m which and they’re all spoke about
which is finding and to carry out community-based
research it it tends to be very expensive
wouldn’t you say our target is to enroll 1400 women living with HIV across the
country and we’re operating using community act that community-based research
practices and GIPA which stands for the greater involvement
of people living with HIV we’ve had 2 phases, the formative phase and we’re now in the national formative survey phase these are our study goals among HIV positive women to assess the
barriers and facilitators women centered HIV service use and to assess the impact of such use on overall and sexual reproductive mental
and women’s health outcomes 0 yeah okay we are practicing from a critical feminist ani-oppression intersectionality social justice social
determinants of health GIPA and MIWA and community-based
research frameworks and principles it sounds like
a lot and and and luckily I don’t have to do
this Shazia is going to go through how we
operationalize at those frameworks in principles in an
actual project okay hello everyone it’s great to be here with all of you, My name is Shazia Islam and I am the women’s health and Support Coordinator at the Alliance for South Asian AIDS prevention prevention it is an AIDS service organization in Toronto and you’d like more information
about our program and services Vijaya is here and she will be here during the networking sessions sessions in pleads feel free to ask questions about ASSAP on with my job at ASSAP, I am equally proud to be one of ` 20 peer research associates associates for the CHIWOS study and my interests range from Community based research, that’s why i’m here and health and agency and of course
LGBTQ rights and advocacy, and I hope to see all of you at the on the streets during Pride, so happy pride. ok principles of community based research in terms of the CHIWOS content, there has been a lot of involvement with Women living with HIV AIDS, we are one of the primary agents and drivers of the research study that speaks to GIPA which is the greater involvement
people living with HIV it in terms of the hiring, the job postings were circulated applications reviewed and interviews completed we have about 20 PRA’s including one allied interviewer in Ontario 9 in BC and 9 in Quebec along with we also had a fantastic training, 3-4 day training detecting back in the spring of 2013 where peer research associate at the
opportunity to network and build relationships with their peers the curriculum itself the training was a
comprehensive which included framework and some of the things Mona mentioned including anti-oppression and feminist frameworks am and intersectionality we also went
over research principles and applies ethics. admit that logistics up actually
putting their survey out there, surveying techniques problem-solving as well as very
important one for PRA’s and that is healthcare. we also did follow up by phone and a lot of that had to do with
them navigating the online survey because we
are working with technology and technology is not always you know
guaranteed and we have our monthly PRA teleconferences a fantastic opportunity for PRA’s to come together to get updates to get feedback to express concern and ask questions about how to study its K and in terms of operational I think
CBR you see it takes a big team to keep CHIWOS running. so we have different committees and groups who are involved with national and provincial core team i am the OCRT rep for Toronto and I am absolutely loving this that position and we also have a
steering committee which again includes any women living with HIVAIDs we have the community advisory boards each province to further the collaboration and cater to local needs. again Peer research associates like myself have been hired to as partners and collaborators to guide the study and I will talk a little bit more about the KTE component in terms of the study update, the study was launched, the online survey was launched on October for its 2013 which was followed by the French survey on November 15th it since then it’s just been gaining and
growing in momentum, so Nationally, we have been able to reach 54 percent of our goal with 750 participants interviewed. in Quebec a 158, BC 196 again we’ve been receiving a lot of
positive feedback from PRA’s participants but the survey we’ve also
been getting some good constructive feedback which we
cam talk about later. there are ongoing support structures for our PRA’s appearing switch of them in terms of KTE, we are on on Twitter and so we like to tweet a lot so please follow us on our Twitter site. we also have a website that gives you a lot a detailed OG us and we also have a Facebook site
to you like us and I’m really happy that I’m using the social media lingo so
hopefully that connects with all of you we also have a national newsletter that is actually out and you can access and on the web 8 again pic we have our own PRA led KTE activities within our communities
within pale within my own network as a worker for ASSAP a stop in yeah and I think race right now only have I think one
minute yeah to discuss challenges and successes so I wanna really just share with
you 2 challenge as with 2 solutions the first one and at in not and not the
finding one which me it you know in terms of getting money wanna share is that at the institution I’m interested to see if
other others have this experience from an academic perspective in I I found at the beginning
institutions academic institute tution didn’t
necessarily understand community-based research and
how could you be hiring women living with HIV to be to be your
research assistants and so it took a lot of time having
meetings and and teaching and education educating at the institution stop the finance
about about about what community-based research ed
at the same time it took educating the community that we had to practice with in
institutional guidelines for finance so that my first and n and navigating the two side and being the person in the middle i fix
I find sometimes challenging I’m the solution I found is very clear
communication a constant communication education being a positive on both sides about it
so at now i can say that I Women’s College
Hospital and Research Institute are very supportive other projects and it’s really great when your when the
institution at staff and at ethics board say we love your project so and also at now the community really do
understand I that at that there’s procedures at the
institution for finance that the second a challenge that I wanna
go over has to do with self-care when you’re
dealing with community-based research project and all
I think all of our projects really do deal with vulnerable populations
vulnerable and marginalized women and we’re also
hiring peer research associates at your
gonna deal where at mental issues you’re gonna deal with breakdowns within it could be the
researchers right could be the Peer Research
Associate could be the participants so you have to be prepared to have solutions before that so we actually have a self-care and safety policy we have we’ve hired counselors that are available I and most most the time 18 hours yesterday I and
it’s just putting in procedures like that and even very methodical and I had to make sure I that on that
all these little aspects are covered thank you

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