Trial Information

Health eCommunities - The Impact of Listservs on Cancer Patients

Abstract:

Internet-based health applications can have powerful positive health effects (e.g. IOM,
2002: Eng et al., 2000; Gustafson et al., 2000). Research has focused on Internet users as
consumers of information, not how they interact with one another, providing advice,
consolation, encouragement and pointers to resources. There has been little evaluation of
health-related mailing lists, email-based applications that connect millions of people, many
with chronic diseases, with one another. The Association of Cancer Online Resources (ACOR)
has teamed with The University of North Carolina (UNC) to assess the impact of participation
on patients, survivors and others (including caregivers) in 15 cancer-related mailing lists
managed by ACOR (www.acor.org). We are conducting a multi-method evaluation with several
elements. In the qualitative component, we are conducting a content analysis of a subset of
threaded discussions from archived mailing list pages to identify a comprehensive set of
themes and key outcomes. This information will provide a richer understanding of mailing
list processes and also will provide checks and balances on the quantitative survey. We
also are evaluating the impact of being a subscriber to ACOR mailing lists on a range of
outcomes by following a cohort of new subscribers for 4 months from sign-up (minimum
n=1680). Baseline, one and four month web-based surveys (with telephone as an option for
those who cannot do web surveys) will be administered to consenting subscribers. We also are
surveying ongoing subscribers who are patients and caregivers (minimum n=1680). We will
disseminate findings to several key audiences, including listowners and members as well as
to a broader audience.

Project Aims:

1. Develop a comprehensive set of potential chronic disease management outcomes and a
fuller understanding of the issues and themes that characterize mailing list
participation.

2. Assess the effects of participation in ACOR mailing lists one month and four months
after joining mailing lists and completing baseline surveys for new subscribers and
through one-time surveys to ongoing subscribers and caregivers.

3. Disseminate study findings to ACOR leadership, participants and the larger online
community.

Qualitative Component:

The main goal of the qualitative component is to systematically identify themes about cancer
disease management and cancer mailing list support group experiences and to use that
knowledge to develop a more refined understanding of mailing list use. The analyses also
include:

- Participation patterns within and across mailing lists over time;

- Mailing list group processes, the nature of online group social support, and the role
of mailing listowners in providing and helping group members support each other; and

- Emergent themes not previously noted in cancer-related stress and online group behavior
and communication research.

Eligibility Criteria:

Eligibility is based on joining one of 15 ACOR mailing lists over a 1 ½ year accrual period.
We defined eligible persons as:

- New patient/survivor subscribers aged 18 and over, have had cancer, and joined a
participating mailing list within the past 10 days; or

- Ongoing patient/survivor subscribers aged 18 and over, have had cancer, and have been a
member of a participating list for more than 10 days; or

- Caregiver subscribers aged 18 and over and care for a cancer patient or survivor in any
capacity (actively or passively).