Health eCommunities - The Impact of Listservs on Cancer Patients

This study has been completed.
Association of Cancer Online Resources
Information provided by:
Robert Wood Johnson Foundation Identifier:
First received: July 6, 2005
Last updated: August 2, 2007
Last verified: August 2007

The purpose of this study is to assess the impact of participation in the Association of Cancer Online Resources (ACOR) mailing lists on chronic disease management for cancer patients, we are focusing on several priority areas. These include factors that influence the use of online interventions over time and the effects of patient-provider interactions on the use of eHealth interventions (as well as vice versa). We also are breaking new ground in a number of important methodological areas related to online survey research.

Our specific aims are:

  1. Conduct a qualitative analysis of a 10% sample of messages (approximately 5,200) obtained over 5 months from 9 ACOR lists to develop a comprehensive set of potential chronic disease management outcomes and a fuller understanding of the issues and themes that characterize list participation. The content analysis will identify important themes and issues in the messages. These themes and issues will help in survey refinement and ground our proposed quantitative survey questionnaire items. Survey analyses will also be enriched by the qualitative data. Finally, the qualitative analysis will stand as an independent body of work.
  2. Conduct a web-based survey of at least 1,680 new ACOR mailing list patient members and approximately 1,680 non-patient subscribers to assess the positive and negative effects of participation in ACOR lists at one month and four months after joining the list and completing a baseline survey.
  3. Disseminate study findings to ACOR leadership, participants and the larger online community.
  4. Develop a plan to convert the findings into training, recommendations, tools and policies to improve list processes. We aim to answer real world, practical questions using methodology that is at once rigorous, practical and ethical. The components are inter-related and complementary.

Condition Intervention
Behavioral: Participation on the ACOR Listserv

Study Type: Observational
Study Design: Observational Model: Defined Population
Time Perspective: Longitudinal
Official Title: Health eCommunities - The Impact of Listservs on Cancer Patients

Further study details as provided by Robert Wood Johnson Foundation:

Estimated Enrollment: 3360
Study Start Date: September 2003
Estimated Study Completion Date: August 2006
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Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes

Inclusion 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).
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Please refer to this study by its identifier: NCT00119951

United States, North Carolina
The University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States, 27599
Sponsors and Collaborators
Robert Wood Johnson Foundation
Association of Cancer Online Resources
Principal Investigator: Barbara K Rimer, DrPH University of North Carolina, Chapel Hill