CREST.BDEmpowered Worldwide

Online Community (EWOC)

1. Origins of the Idea2. The Current Idea

3. Major Goals4. Major Issues

5. Initial Requirements6. Next Steps

7. Potential Funding Sources

Overview

EWOC

origins of the idea• arose during last year’s network meeting• began as an idea to do a large-scale international internet survey

using data visualization and social media as recruitment and networking tools

• grew into a larger idea that involves the creation and support of an online community

• with philosophies and goals that emulate those of CREST.BD

EWOC

the current idea• arose during last year’s network meeting• began as an idea to do a large-scale international internet survey

using data visualization and social media as recruitment and networking tools

• grew into a larger ivdea that involves the creation and support of an online community

• with philosophies and goals that emulate those of CREST.BD• in short: a site/tool similar to patientslikeme.com, but for BD and

with a different set of philosophies and goals

EWOC

major goals• a living library• tackle isolation and stigma• dissemination of treatments and interventions in hard-to-access,

marginalized, and/or rural communities• create and build community• a major international research platform• health and QoL improvements through research engagement

and dissemination of cutting-edge psychosocial treatments and interventions

• users as experts who are integrally involved in research• research and knowledge exchange

EWOC

initial requirements• built by professional designers and programmers• launched all at once (rather than iteratively)• ‘responsive’ web design (with an associated app?)• integrated social media capabilities• private chat system• social network and other visualizations

EWOC

major issues• multiple language support• defining BD for the potential user (to avoid excluding those who

don’t have a formal diagnosis)• a good research question for launch?• user privacy considerations

EWOC

next steps• identify interested CREST network members• identify current resources and barriers to support grant develop-

ment within the context of the 2014-15 workplan• further specify the philosophies of the site/tool• flush out the details for a grant application• identify suitable funders for such a grant application (or applica-

tions)• compose the grant application(s)

EWOC

potential funders• Canadian Institutes for Health Research (CIHR) Foundation fund-

ing scheme• CIHR e-Health funding?• Pharma?• UBC Peter Wall Foundation• Canadian International Development Research Centre (IDRC)• International Funding Opportunities?