PERF RMANCE 04 - The Performance Portal - Ernst & Young

Coolfarming
Figure 1. Facebook social network of
IBD-related fan pages, each dot is a
person, each connecting line a friendship
link, different groups shown in different
colors. Note the fragmented structure
of the entire network, split into the
different groups, only the red dots are
people with membership in multiple
Facebook IBD-related groups.
We have tested new communication
approaches to create a successful
innovation network comprised of
patient advocates, public health and
social scientists, community organizers,
film makers, designers, informaticists,
engineers and social network researchers.
Our research shows that the IBD patient/
parent community is only loosely
connected, that patients experience
isolation and that the community is
not organized or activated around a
vision of improving health through
active collaboration with clinicians and
researchers. We have been able to create a
more engaged community, as measured by
number of patients/parents engaged in the
Collaborative Chronic Care Network and
in community leadership. Our patients
also form a more networked community,
as measured by the number and density
of community network ties. Finally, we
measurably increased collaboration
among patients/parents, clinicians and
scientists, as measured by number and
metrics of network centrality of patients
and parents as part of the research
team. Further improvements include
an increase in trust, as measured by
survey data and by consent rates for
participating in the IBD patient registry,
and an increase in data sharing, as
measured by number of patients willing
to share patient reported outcomes.
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