How new subscribers use cancer-related online mailing lists

Barbara K. Rimer, Elizabeth Lyons, Kurt M. Ribisl, J. Michael Bowling, Carol E. Golin, Michael J. Forlenza, Andrea Meier

Research output: Contribution to journalArticle

50 Citations (Scopus)

Abstract

Background: Online cancer-related support is an under-studied resource that may serve an important function in the information seeking, care, and support of cancer patients and their families. With over 9.8 million cancer survivors (defined as anyone living with cancer) in the United States alone and the number growing worldwide, it is important to understand how they seek and use online resources to obtain the information they need, when they need it, and in a form and manner appropriate to them. These are stated cancer communication goals of the US National Cancer Institute. Objectives: Our purposes are to (1) present background information about online mailing lists and electronic support groups, (2) describe the rationale and methodology for the Health eCommunities (HeC) study, and (3) present preliminary baseline data on new subscribers to cancer-related mailing lists. In particular, we describe subscribers' use of mailing lists, their reasons for using them, and their reactions to participating shortly after joining the lists. Methods: From April to August 2004, we invited all new subscribers to 10 Association of Cancer Online Resources mailing lists to complete Web-based surveys. We analyzed baseline data from the respondents to examine their perceptions about cancer-related mailing lists and to describe how cancer patients and survivors used these lists in the period shortly after joining them. Results: Cumulative email invitations were sent to 1368 new mailing list subscribers; 293 Web surveys were completed within the allotted time frame (21.4% response rate). Most respondents were over age 50 (n = 203, 72%), white (n = 286, 98%), college graduates (n = 161, 55%), and had health insurance (n = 283, 97%). About 41% (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62% (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42% (n = 121) strongly agreed they used mailing lists for support, and 37% (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9%), that they could relate to the experiences of others on the lists (n = 66, 27%), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27%). Conclusions: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps underused by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant.

Original languageEnglish (US)
Article numbere32
JournalJournal of Medical Internet Research
Volume7
Issue number3
DOIs
StatePublished - 2005
Externally publishedYes

Fingerprint

Joining
Health
Health insurance
Neoplasms
Electronic mail
Survivors
Communication
National Cancer Institute (U.S.)
Self-Help Groups
Health Insurance
Reading

Keywords

  • Cancer
  • Internet
  • Listservs
  • Mailing lists
  • Online communities
  • Online support groups
  • Patients
  • Survivors

ASJC Scopus subject areas

  • Medicine(all)
  • Computer Networks and Communications

Cite this

Rimer, B. K., Lyons, E., Ribisl, K. M., Bowling, J. M., Golin, C. E., Forlenza, M. J., & Meier, A. (2005). How new subscribers use cancer-related online mailing lists. Journal of Medical Internet Research, 7(3), [e32]. https://doi.org/10.2196/jmir.7.3.e32

How new subscribers use cancer-related online mailing lists. / Rimer, Barbara K.; Lyons, Elizabeth; Ribisl, Kurt M.; Bowling, J. Michael; Golin, Carol E.; Forlenza, Michael J.; Meier, Andrea.

In: Journal of Medical Internet Research, Vol. 7, No. 3, e32, 2005.

Research output: Contribution to journalArticle

Rimer, BK, Lyons, E, Ribisl, KM, Bowling, JM, Golin, CE, Forlenza, MJ & Meier, A 2005, 'How new subscribers use cancer-related online mailing lists', Journal of Medical Internet Research, vol. 7, no. 3, e32. https://doi.org/10.2196/jmir.7.3.e32
Rimer, Barbara K. ; Lyons, Elizabeth ; Ribisl, Kurt M. ; Bowling, J. Michael ; Golin, Carol E. ; Forlenza, Michael J. ; Meier, Andrea. / How new subscribers use cancer-related online mailing lists. In: Journal of Medical Internet Research. 2005 ; Vol. 7, No. 3.
@article{60dae32938194403ac829d945f7c3b98,
title = "How new subscribers use cancer-related online mailing lists",
abstract = "Background: Online cancer-related support is an under-studied resource that may serve an important function in the information seeking, care, and support of cancer patients and their families. With over 9.8 million cancer survivors (defined as anyone living with cancer) in the United States alone and the number growing worldwide, it is important to understand how they seek and use online resources to obtain the information they need, when they need it, and in a form and manner appropriate to them. These are stated cancer communication goals of the US National Cancer Institute. Objectives: Our purposes are to (1) present background information about online mailing lists and electronic support groups, (2) describe the rationale and methodology for the Health eCommunities (HeC) study, and (3) present preliminary baseline data on new subscribers to cancer-related mailing lists. In particular, we describe subscribers' use of mailing lists, their reasons for using them, and their reactions to participating shortly after joining the lists. Methods: From April to August 2004, we invited all new subscribers to 10 Association of Cancer Online Resources mailing lists to complete Web-based surveys. We analyzed baseline data from the respondents to examine their perceptions about cancer-related mailing lists and to describe how cancer patients and survivors used these lists in the period shortly after joining them. Results: Cumulative email invitations were sent to 1368 new mailing list subscribers; 293 Web surveys were completed within the allotted time frame (21.4{\%} response rate). Most respondents were over age 50 (n = 203, 72{\%}), white (n = 286, 98{\%}), college graduates (n = 161, 55{\%}), and had health insurance (n = 283, 97{\%}). About 41{\%} (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62{\%} (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42{\%} (n = 121) strongly agreed they used mailing lists for support, and 37{\%} (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9{\%}), that they could relate to the experiences of others on the lists (n = 66, 27{\%}), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27{\%}). Conclusions: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps underused by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant.",
keywords = "Cancer, Internet, Listservs, Mailing lists, Online communities, Online support groups, Patients, Survivors",
author = "Rimer, {Barbara K.} and Elizabeth Lyons and Ribisl, {Kurt M.} and Bowling, {J. Michael} and Golin, {Carol E.} and Forlenza, {Michael J.} and Andrea Meier",
year = "2005",
doi = "10.2196/jmir.7.3.e32",
language = "English (US)",
volume = "7",
journal = "Journal of Medical Internet Research",
issn = "1439-4456",
publisher = "Journal of medical Internet Research",
number = "3",

}

TY - JOUR

T1 - How new subscribers use cancer-related online mailing lists

AU - Rimer, Barbara K.

AU - Lyons, Elizabeth

AU - Ribisl, Kurt M.

AU - Bowling, J. Michael

AU - Golin, Carol E.

AU - Forlenza, Michael J.

AU - Meier, Andrea

PY - 2005

Y1 - 2005

N2 - Background: Online cancer-related support is an under-studied resource that may serve an important function in the information seeking, care, and support of cancer patients and their families. With over 9.8 million cancer survivors (defined as anyone living with cancer) in the United States alone and the number growing worldwide, it is important to understand how they seek and use online resources to obtain the information they need, when they need it, and in a form and manner appropriate to them. These are stated cancer communication goals of the US National Cancer Institute. Objectives: Our purposes are to (1) present background information about online mailing lists and electronic support groups, (2) describe the rationale and methodology for the Health eCommunities (HeC) study, and (3) present preliminary baseline data on new subscribers to cancer-related mailing lists. In particular, we describe subscribers' use of mailing lists, their reasons for using them, and their reactions to participating shortly after joining the lists. Methods: From April to August 2004, we invited all new subscribers to 10 Association of Cancer Online Resources mailing lists to complete Web-based surveys. We analyzed baseline data from the respondents to examine their perceptions about cancer-related mailing lists and to describe how cancer patients and survivors used these lists in the period shortly after joining them. Results: Cumulative email invitations were sent to 1368 new mailing list subscribers; 293 Web surveys were completed within the allotted time frame (21.4% response rate). Most respondents were over age 50 (n = 203, 72%), white (n = 286, 98%), college graduates (n = 161, 55%), and had health insurance (n = 283, 97%). About 41% (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62% (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42% (n = 121) strongly agreed they used mailing lists for support, and 37% (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9%), that they could relate to the experiences of others on the lists (n = 66, 27%), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27%). Conclusions: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps underused by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant.

AB - Background: Online cancer-related support is an under-studied resource that may serve an important function in the information seeking, care, and support of cancer patients and their families. With over 9.8 million cancer survivors (defined as anyone living with cancer) in the United States alone and the number growing worldwide, it is important to understand how they seek and use online resources to obtain the information they need, when they need it, and in a form and manner appropriate to them. These are stated cancer communication goals of the US National Cancer Institute. Objectives: Our purposes are to (1) present background information about online mailing lists and electronic support groups, (2) describe the rationale and methodology for the Health eCommunities (HeC) study, and (3) present preliminary baseline data on new subscribers to cancer-related mailing lists. In particular, we describe subscribers' use of mailing lists, their reasons for using them, and their reactions to participating shortly after joining the lists. Methods: From April to August 2004, we invited all new subscribers to 10 Association of Cancer Online Resources mailing lists to complete Web-based surveys. We analyzed baseline data from the respondents to examine their perceptions about cancer-related mailing lists and to describe how cancer patients and survivors used these lists in the period shortly after joining them. Results: Cumulative email invitations were sent to 1368 new mailing list subscribers; 293 Web surveys were completed within the allotted time frame (21.4% response rate). Most respondents were over age 50 (n = 203, 72%), white (n = 286, 98%), college graduates (n = 161, 55%), and had health insurance (n = 283, 97%). About 41% (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62% (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42% (n = 121) strongly agreed they used mailing lists for support, and 37% (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9%), that they could relate to the experiences of others on the lists (n = 66, 27%), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27%). Conclusions: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps underused by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant.

KW - Cancer

KW - Internet

KW - Listservs

KW - Mailing lists

KW - Online communities

KW - Online support groups

KW - Patients

KW - Survivors

UR - http://www.scopus.com/inward/record.url?scp=29144510622&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=29144510622&partnerID=8YFLogxK

U2 - 10.2196/jmir.7.3.e32

DO - 10.2196/jmir.7.3.e32

M3 - Article

C2 - 15998623

AN - SCOPUS:29144510622

VL - 7

JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

SN - 1439-4456

IS - 3

M1 - e32

ER -