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Seeding Research:Sprouting Change

Sarah FlickerDirector of Research

March 30, 2006

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A bit about me

• Born & bred in Montreal• Medical Anthropology (BA, Brown U)• Epidemiology & Maternal and Child Health

(MPH, UC Berkeley)• Social Science and Health (PhD, U of Toronto)• Director of Research, Wellesley Central

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Capacity Building Initiatives

•CBR: Certificate Program

• Leadership Capacity Building: Certificate Program

• WC-Maytree: Public Policy Training Institute

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Wellesley Central Grants

• Enabling Grants• Up to 10K• Start-up funding

“The biggest outcome was that we found out that the community did not want what we thought they wanted.”

• Advanced Grants•Up to 80K over 2 years•Operational funding

“We are incredibly lucky that we have an academic who very much supports the work that we're doing and doesn't have an ego and you know, it's just amazing and very helpful. … He's got kind of his own research going on, but … he supports, you know, community-based research.”

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Enabling Outcomes

Anticipated: completed literature reviews, developing research questions and applying for research funding. Many grantees were successful in leveraging new research and program dollars.

Unanticipated outcomes: finding new and unexpected research and program partners, developing new advocacy networks & engaging on a new level with policy makers.

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Advanced Outcomes

Anticipated: Developing new partnerships; building new skills and capacities; developing best practice model resources and communication materials; making policy and program changes; and, attracting the attention of key stakeholders, including politicians, decision makers and the media.

Unanticipated outcomes: building strong partnerships with community agencies and members; building strong linkages between agencies; connecting individuals with resources in the community; engaging community members in research; sharing research with other agencies; and, learning more about research processes and practicing reflexivity.

Challenges: difficulty building and sustaining strong partnerships, finding appropriate funding and trouble with dissemination and knowledge transfer.

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Ottawa Charter for Health Promotion, 1986

“the process of enabling people to increase control over, and to improve, their health”

Macro Meso Micro

E.g. health communication, education, self-help/mutual aid, organizational change, community development and mobilization, policy development, advocacy & research

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Common Problems in Traditional Research

• Irrelevance or insensitivity to community• Research is not giving back• Communities feel over researched• Communities feel coerced• Direct benefits to community are minimal

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CBPR

“CBPR is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change”

Israel et al, 1998

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AHRQ Report: CBPR: Assessing the EvidenceJuly 2004www.ahrq.gov/clinic/evrptpdfs.htm

How has CBPR been implemented to date with regard to the quality of research methodology and community involvement?

What is the evidence that CBPR efforts have yielded the intended outcomes?

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““High quality research and intense community involvement are High quality research and intense community involvement are not contrary to each other.”not contrary to each other.”

Bottom Line:

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CBPR: Why Now?

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CBR in Canada…

Flicker & Savan, 2005

Characterize CBR in Canada

Explore relevant CBR barriers and facilitators and possibilities for change

Advocate for creating more CBR-friendly policies in the academy, community and funding programs

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I. Methodology

Extensive literature review of facilitators and barriers to CBPR

Individual interviews with key CBPR practitioners

Advisory committee of leading CBPR practitioners from North America

Online survey of a wide cross-section of those involved in CBPR in Canada (n=308)

Three focus groups of interested practitioners (Sept.’05)

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Sample Characteristics (n=308)

CBR Experience n %

<3 yrs 127 48%

3-10 yrs 80 30%

>10 yrs 58 22%

Organization

Academic/Hospital 143 54%

Non profit/Citizen 79 30%

Government 27 10%

For profit/funder 16 6%

Role of Project

Principal Investigator 89 35%

Co-Investigator 56 22%

Paid Staff 45 18%

Advisory Committee Member 20 8%

Other (including community partner) 43 17%

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II. What resources are they working with?

Duration Budget

<1 year29%

1-3 years49%

>3 years22%

N = 240

<$20,00031%

$20,001-$100,00032%

>$500,00014%

$100,001-$500,000

23%

N = 265

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III. Involvement

Involvement in the CBPR Research Process

2.1

2.7 2.72.7

2.3

2.2

1.3

2.1

1.8

1.92.0

1.8

2.1

2.0

2.1

2.1

2.3

2.0

2.3

2.5

1.61.5 1.5

1.3 1.3

1.7

1.5

1.7

2.3

2.5

2.6 2.6

2.22.2

2.42.5 2.62.5

2.5

2.6

1.0

1.2

1.4

1.6

1.8

2.0

2.2

2.4

2.6

2.8

3.0

Supporting theproject

financially

Defining theresearchquestion

Developing themethodologyto answer the

question

Planning theresearch

Data collection(e.g.

interviewing,surveying etc)

Analysis andinterpretation

of the data

Disseminatingthe results

Offering skillbuilding

opportunitiesto build the

Using thefindings foradvocacypurposes

Using thefindings to

change policyor practice

I nvolvement Category

Mean

In

volv

em

en

t S

core

(1

-3,

3 in

dic

ate

s h

igh

est

level of

involv

em

en

t)

Academic Researchers Community Members Service Providers/NGO Government/Funders

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IV. CBPR as an Effective Tool

The rate at which respondents cited ‘negative’ outcomes was far lower than that for ‘positive’ outcomes

Outcomes Outputs

47.8% 45.9%

40.0%36.3%

30.4%

12.6% 11.5%6.7%

3.0% 2.2% 1.9% 1.5% 0.7%

57.0%

41.1%35.9%

14.8%

4.8%

Incr

ease

dco

mm

unit

y c

apaci

ty

Pla

ns

for

futu

repro

ject

s

Cord

ial w

ork

ing

rela

tionsh

ip

New

coalit

ions

Change in a

gency

pro

gra

mm

ing/p

olic

y

Incr

ease

d f

undin

g

Change in

govern

ment

pro

gra

mm

ing/p

olic

y

People

were

upse

tw

ith e

ach

oth

er

Incr

ease

ddis

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onm

ent

am

ong p

art

ners

The p

roje

ct d

id n

ot

resu

lt in a

ny

changes

Incr

ease

d m

istr

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Incr

ease

dpola

riza

tion

Alie

nati

on f

rom

funders

Pre

senta

tion(s

)

Publis

hed p

aper(

s)

Polic

y d

ocu

ment(

s)or

reco

mm

endati

ons

Not

applic

able

I don't

know

Frequ

en

cy (

%)

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V. Facilitating CBPR

Facilitator Importance

4.46 4.404.22 4.19 4.19 4.16

4.06

3.60

1.00

1.50

2.00

2.50

3.00

3.50

4.00

4.50

5.00

Funding Support Tenure Credibility Trianing Advocacy Ethics PoliciesRevision

IndependentCBR ERB

Facilit

ato

r S

core

(1

-5)

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VI. Barriers to CBPR

3.83 3.75 3.683.45

3.33 3.303.07 3.06 2.98 2.98 2.89 2.83 2.81

1.00

1.50

2.00

2.50

3.00

3.50

4.00

Sca

rcit

y o

f fu

ndin

g s

ou

rces

availa

ble

to s

upport

CB

R p

roje

cts

Lack

of

inst

itu

tion

al su

pport

for

CB

R (

e.g

. re

ward

str

uct

ure

s)

Too m

an

y c

om

peti

ng d

em

an

ds

tom

ake t

ime f

or

CB

R

Lack

of

reso

urc

es

(e.g

. sp

ace

,co

mpu

ters

, ti

me)

Perc

epti

on

th

at

CB

R lack

sm

eth

odolo

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al ri

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r an

dobje

ctiv

ity

His

tory

of

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eelin

gs

an

dm

istr

ust

betw

een

aca

dem

icin

stit

uti

on

s an

d c

om

mu

nit

y

A C

BR

pro

ject

takes

too m

uch

tim

e t

o c

om

ple

te

Lack

of

repre

sen

tati

on

or

perc

eiv

ed t

oken

ism

am

on

gco

mm

un

ity m

em

bers

Belie

f th

at

resu

lts

will

not

be

dis

sem

inate

d o

r act

ed u

pon

Ch

alle

nges

of

gett

ing p

roje

ctappro

ved b

y e

thic

s

Too m

an

y p

ow

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imbala

nce

s to

overc

om

e

Diffi

cult

y fi

ndin

g a

ppro

pri

ate

part

ners

Lack

of

skill

s an

d c

on

fiden

ce t

oen

gage in

CB

R

Barr

ier

Score

(1

-4)

Barrier Importance

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Bottom line

CBPR is an effective strategy – but special attention needs to be paid to minimizing barriers and maximizing facilitators in order to support this approach to research.

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Positive Youth Project

Our goal is to improve the lives of young people living with HIV, in Canada and beyond.

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Background

•11.8 million youth (15-24) live with HIV/AIDS; 1/2 of all new HIV infections occur among youth.

•As of June 2004, 15,000 youth and young adults under the age of 29 had tested positive for HIV in Canada

•HIV-positive youth experience multiple forms of disadvantage.

•yPHAs have a wide range of specific service needs.

•There is a profound lack of resources for HIV-positive youth in Canadian urban centres.

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Project Partners

ACCESS AIDS Network SudburyAIDS Committee of Newfoundland & LabradorAIDS Committee of SimcoeAIDS Committee of TorontoAIDS Thunder BayAsian Community AIDS ServicesCanadian Aboriginal AIDS NetworkCanadian AIDS SocietyCanadian AIDS Treatment Information Exchange (CATIE)Canadian Foundation for AIDS ResearchChildren's Hospital of Eastern Ontario (CHEO)Fusion Studios Inc.HIV Society NorthJASE

Les Enfants de BéthanieOntario AIDS NetworkOntario HIV Treatment NetworkPauktuutitPlanned Parenthood of TorontoPositive Youth OutreachSomerset West Community Health CentreTeenNet, University of TorontoTeresa GroupThe Hospital for Sick ChildrenVoices for Positive WomenWellesley CentralYouth AdvisorsYouthCoYouthlink City

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Methods

We interviewed 70 diverse HIV positive youth (12-24) across Canada and held telefocus groups with 30 service providers to uncover:

How can we better support HIV-positive youth?

Principle Investigators

Project Coordinator

Working Group(once a month)

Youth meetings(once a week)

National Advisory Committee(quarterly)

Focus Groups with Youth[Across Canada – 1 year]

Co-Investigators(intermittently)

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Youth-led methodology

• Setting the research agenda• Designing the questions• Designing the protocol• Analysis• Dissemination

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Major Themes: Isolation & Stigma

• ASOs are not seen as youth-friendly institutions. “The atmosphere was not good. It looked too… like it was for sick people. … It was just not a good atmosphere. The colors of the walls were awful, people were grumpy...”

• YSOs are not seen as HIV-friendly institutions.“I can’t go to E-- and talk to youth there though because some have it and some don’t, you don’t know who does, everyone is quiet about it, you know what I mean…”

New models of collaboration are necessary to reach HIV positive youth.“Like maybe have a youth drop in centre where its just like people with HIV especially coming down and then they can just talk about whatever and they can just hang out because they’re one of them …”

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Major Themes: Isolation & Stigma

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Major Themes: Treatment Confusion

• Why take treatment if it can’t cure?

• What are the different options?

• What are the different side effects?

• How can I afford them?• What impact will they

have on my life?• How come I can’t just

stop and start when I want?

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Major Themes: Treatment Confusion

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Major Themes: Internet

high rates of Internet use & access, especially among most impoverished youth;

issues around public and private terminals;

youth use the Internet primarily for communication and entertainment;

health information seeking behavior is rare; and

youth want “one-stop shopping” from an e-health site.

The Internet may be a viable way to impart ‘youth friendly’ health information: anonymous, confidential, interactive, 24 hour access, connectivity

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Major Themes: Internet

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More Results - questions

What is HIV? How does it work?

CoinfectionsMedication &

TreatmentHow will HIV change

my life?Disclosure?

Choosing a docAdjusting to the newsLiving wellPregnancyGetting good help

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Taking Action

www.livepositive.ca - a bilingual resource was developed for HIV-positive youth and ASO’s.

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Actions to date

• Revitalization of the national “children, youth and families HIV network”• Trained a group of local HIV-positive youth and agency service providers to become co-researchers• Developed workshop templates to be used nationally by CATIE to address youth treatment needs•Hosted Canada’s largest youth & HIV roundtable •Developed youth-lead training modules for ASOs and YSOs seeking to become more youth/HIV friendly•Advised key local and national funders and institutions regarding youth needs and treatment issues• Conducted, presented and facilitated numerous academic and lay presentations regarding our research findings and process• Published 4 peer-review papers and 4 youth zines•Developed bilingual Web site, www.livepositive.ca / www.viepositive.ca

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Contributions to CBPR

YouthCommunity-based

organizationsAcademic Researchers

Time, hard work, commitment

• knowledge of community, • ‘lived experience,’ • devotion, • hands-on work,• analysis & dissemination

• knowledge of community,• funding proposals• recruitment• analysis, dissemination,• program development, • community concerns

• research experience• funding proposals• project administration and

guidance, • day-to-day operation,• ethics review, • analysis & dissemination

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new networks new skills

mutual learning‘the research itself’

personal career advancement

new programs& services for youth

Youthmentorship opportunities

grants, tenure, promotionaccess to new communities, ‘cultural competence’better data & interpretationnew dissemination outlets

research skills, being heard and feeling usefulnew information, new opportunitiesfinancial remuneration

Academic Researchers

Community Based Organizations

research skills, credibility, new partners, new programs, data for advocacy

Benefits CBPR

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Youth: Strong dose – response!

Just coming to be a part of something was… good for me...I think helping out on a research project, well for me anyway, like makes me feel like I've done something, you know, and that's good for me. You know, maybe I didn't do a lot of stuff, you know, but I did something, you know. Do the best I could and I try. (youth, b)

The way I put my vigour into it, it took up a lot of my energy...But it took up my energy in a very good way. It gave me something to do and I felt like it was like a part-time job. So it wasn't overwhelming. It wasn't too much. (youth, a)

Ah, like it gave me renewed sense of purpose that I'm doing something good; that I'm not only helping myself but I'm helping others and I guess you can say it gives you that warm, fuzzy feeling…It made me feel useful. That was something since being diagnosed that I couldn't feel… I looked forward to the meetings that we had every Tuesday, not so much for the pizza or the money; it was, uh, it felt like I was contributing to a team again. (youth, f)

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Another beneficiary… The research itself

• Better Questions. • Better Recruitment. • Better Data Collection.• Better Analysis. • Better Dissemination. • Better Action.

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More Critical Concerns

“CB” “P” “R”

• Who represents community?

• What does it mean to represent community-based concerns?

• What about intra-community conflict?

• Wide range of on extent of “participation”

• Efficiency arguments

• Empowerment arguments

• Participation & empowerment ideology can inadvertently depoliticize groups

• Subjectivity greatest strength and weakness

• Academic freedom?

• Methodological rigor

• Internal vs External validity

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Some advice on collaborating with youth…

• Go where the youth are. • Be yourself: be honest. • Build incentives to participation into your grants. • Respect difference and diversity. • Be clear about your limits. • Provide training and support, be patient, and then raise the bar. • Research is only one small part of the solution. • Where there is power inequity, adopt a 2:1 rule. • Empowerment can be a double-edged sword. • Find Supportive Environments.

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Questions, comments

Sarah Flicker, PhDDirector of ResearchWellesley Central Health Corporation45 Charles Street E, Suite 101Toronto, ON M4Y 1S2 phone: 416 972-1010 X 225fax: 416-921-7228

www.livepositive.ca or www.viepositive.ca