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Identifying and Disseminating Best Practices for Health e-Communities
Executive Summary of Findings
From an E-mail Needs Assessment Survey of ACOR Listowners
July 2006
Andrea Meier, PhD #a
Elizabeth Lyons, MPH #b
University of North Carolina at Chapel Hill
School of Social Work
School of Public Health
Contact Information
We welcome your questions and comments!
Send them to: Andrea Meier ameier@email.unc.edu
Contents |
[edit] Acknowledgements
This survey was funded as part of a dissemination grant from the Robert Wood Johnson Foundation. We are also grateful for the collaboration of Gilles Frydman, the founder of ACOR for implementing the survey, the ACOR listowners who helped to design the survey, and all the other listowners who participated in the study.
[edit] Introduction
Relatively little is known about the challenges faced by listowners (LOs) of health eCommunities when managing the technical and social dynamics of their lists. The conference "Identifying and Disseminating Best Practices for Health e-Communities (June 18-20, 2006, Chapel Hill, NC), was organized to address this and related issues. To obtain preliminary data for discussion at one of the conference workshops, the team of researchers at the University of North Carolina conducted an exploratory survey of listowners of ACOR's 154 mailing lists.
We surveyed listowners about their experiences and challenges on ACOR lists, including:
- Facilitation challenges associated with structural characteristics of ACOR lists. Structural characteristics included the number of subscribers, volume of messages, group composition, and rate at which members joined or left the lists.
- Facilitation challenges associated with group dynamics of ACOR lists. Here we included issues related to group cohesion and how members related to each other and listowners. Cohesion is members' sense of identification and satisfaction with the group, their ability to stay focused on the purpose of the list, and perceived levels of mutual support. In addition, group dynamics include conflict among list participants and how members and listowners react when confronted with cancer-related debilitation and death.
- Challenges in management of ACOR lists as virtual organizations. These challenges included issues related to developing and sustaining listowner teams and managing interactions with researchers.
- Listowner use of Oncolists and issues in the governance of ACOR. (ACOR offers LOs a mailing list of their own, Oncolists, as a forum for discussions about list ownership.) Participants were asked to reflect on how well Oncolists worked as a source of informational support on the technical operation of their lists and management issues, as a source of emotional support for their leadership roles, and as a way to provide feedback on ACOR governance.
The survey was developed in collaboration with Gilles Frydman and three ACOR listowners, all of whom were participants in the conference. The UNC team developed the survey items based on research on problems in group facilitation and grass-roots community development. These items were then reviewed by the listowners for appropriateness and readability and revised in light of their feedback. The final version of the survey was posted to Oncolists on May 8, 2006. Email is ephemeral, so email surveys are likely to get lost in the flow of messages in LO inboxes. Following one of the consulting LO's suggestions to counteract the problem of message overload, LOs were given one week to respond. Mr. Frydman actively encouraged listowners to participate and posted reminders to Oncolists two days before the end of the data collection period. Ultimately, 21 LOs from 13 different lists completed the survey.
The survey was composed of 31 items and was divided into three sections. The first section contained five open-ended questions that covered LOs' background experience with their lists. The second section, containing 23 items, asked LOs to describe the challenges associated with being a listowner on an ACOR mailing list. Twenty-two of the items in this section were framed in terms of “How much of a problem has [situation] been in the past 6 months?” The 4-point Likert scale ranged from “not at all” to “very much.” Respondents could also choose “Not applicable.” In the last section, LOs were asked to comment on their experiences with ACOR's mailing list for listowners, Oncolists, and assess that list's strengths and limitations. This section contained five open-ended questions. The last question on the survey gave respondents an opportunity to add any comments they thought would help researchers understand their roles as list owners, how their lists work, or how ACOR works.
[edit] Findings
[edit] Listowner Characteristics
The listowners who responded to this survey tended to be experienced as members on their respective lists and as listowners. Many invested substantial amounts of time and energy running their lists, typically about a day and a half per week. Most LOs reported that they had the benefit of at least two other people helping them with list responsibilities. One of the benefits of being part of the ACOR collaborative of lists was that LOs had access to a network of other listowners willing to serve on LO teams, thereby reducing the load on any one listowner.
[edit] Structural Factors
According to most participants in this study, socio-structural factors (list size, message volume, group composition, and member activity levels) did not pose facilitation problems. Typically, their lists had enough new subscribers to keep the discussions “fresh” and enough older members willing to answer questions. Listowners were comfortable with the idea that a large proportion of their lists' membership lurked--reading messages but posting only rarely. Many of the LOs represented large lists (median list size: 1057 subscribers; range: 126 to 2522 subscribers), so they were realistic in recognizing that if too many members were active contributors, their lists would be at risk of information overload.
[edit] Group composition
ACOR lists are heterogeneous in terms of the characteristics of their subscribers. They are composed of members who are cancer survivors at various stages of their disease and treatment. They are also diverse in their health status. On many, family caregivers are represented in significant proportions. This characteristic heterogeneity appears to contribute to the resilience of the lists. Some members who go into remission stay on the list to help others. In other cases, family caregivers participate on the lists and develop relationships with other listmates and concern for their lists as a whole. After the death of the family member with cancer, these other family members remain on the list as active members and in some cases join LO teams.
[edit] Task focus
In general, participants reported that they had little difficulty keeping their lists' discussions on topic. Some LOs cited instances of a few members who would occasionally persist in bringing up topics not relevant to the list. In those instances, the LOs would put the offending member “on review”--reviewing each message sent by that member for appropriateness before allowing it to be sent to the list. Such strategies were aimed at minimizing disruptions.
[edit] Group Dynamics
The 13 lists represented in this study appeared to be quite cohesive. In addition to staying on task and maintaining low levels of conflict, members were open about expressing their appreciation for their lists, both while they were active and in their responses to the automatic exit query message when they were leaving the lists.
[edit] Conflict management
Participants in this study viewed some conflicts among list members as part of normal group behavior. However, to protect their lists, they were careful to keep conflicts from escalating. They contacted contending members offline to ask them to be more restrained, occasionally put them on review, and--as a last resort--removed them from the list.
Most of the participating LOs reported that they were able to maintain good relationships with members and that LO conflicts with members were rare. When they do occur, such conflicts can arise for a variety of reasons. Members may get angry if LOs prevent their posting about topics they feel strongly about, most often religion or alternative medicine; or if an LO tries to stop them from offering inappropriate medical advice. One attributed the conflicts to the personalities of “unusually difficult members.”
The LOs who commented on this issue appeared to be pragmatic about conflicts. “These things seem to happen with a certain inevitability, and one must just deal with them, though not always without feeling stressed about it.” In managing conflicts, LOs may try to shape the behavior of “difficult members” rather than actively confront them. One LO reported that members were encouraged to take their debates offline. Another commented, “I usually avoid direct conflict or contradiction and strive to bring the bigger picture to light. There is no one right answer for everyone, especially when folks are dealing with an often serious, rare disorder and their local medical options.”
Some problems arose because of internal conditions of the groups. Three LOs noted that discussions in which a few members had strongly expressed religious views had upset other members, as well as the LOs who had to calm things down afterwards. In another list, the LOs had to deal with the distress caused by hurtful messages written offlist to the spouse of a member who had terminal cancer.
[edit] Emotional support
Although the primary mission of ACOR lists is to provide information about cancer and cancer treatments, LOs reported that their lists are also reliable sources of emotional support. On larger lists, some members assumed responsibility for providing this kind of support.
[edit] Changes in list composition
Problems could also arise because the composition of a list's membership changed over time. On one list, the shift was from a group of adult survivors to a greater proportion of parents of newly diagnosed children. The LO noted that the parents had become very strong at supporting one another, “but it took a few years to get to this good point.”
[edit] Coping with grief and loss
A majority of LOs in this study reported that their lists had not had to cope with grief and loss over members within the past six months, although two LOs had apparently had been confronted with quite a lot of challenges in this area. How much of a problem grief and loss pose may be related to the type and lethality of list members' cancers. In general, list mates are able to help each other weather these sad events. However, LOs noted that, when several deaths occur in a short period of time, some members find the emotional burdens of participation too heavy to bear, resulting in a flurry of requests to unsubscribe from the lists.
Because many of the listowners are also survivors, they are at risk for recurrence or metastases of their cancers. This is another reason why it is important to have listowner teams who can compensate if one LO becomes ill. If LO teams are functioning well, members may not even know that a LO is ill.
A few LOs reported that several members of their teams had died over the past two years. In two cases, the people who died were the ones who founded the lists. The loss of a listowner can have long-term effects on the list community as a whole. LOs and list members cope with these losses in different ways. One LO established a memorial website, “which may have helped in our coping with his death and renewing of our dedication to helping each other out.” The LO of another list commented, “Each December we mark [the death of the co-founder] with a new round of getting to know new members.“ On another list, the spouses of deceased LOs have taken their places on the LO teams.
[edit] External factors
Three LOs mentioned problems due to conditions and situations external to their lists. In one case, members reported that there is simply very little information about or competent care available for members. In this case, the LO had to become very active in helping members locate whatever help was available. Another LO described wildly inappropriate behavior by the LO of a “competing” non-ACOR list that dealt with the same type of cancer who persistently tried to “stir up trouble” on the ACOR list. The “offending” LO “bad-mouthed” the founding LO of the ACOR list and the list itself. He also joined the ACOR list under a false identity to mine names of everyone who posts, spamming those members with email advertising the other list.
[edit] List Management Issues
[edit] Listowner Team Development
For the lists represented in this study, LOs reported that their teams were organized quite informally but were functioning well. In general, these teams seem to be able to make decisions about policies for the list without too much difficulty. While most of the participants had not been involved in adding any new features (chat groups, websites, etc.) to their lists, those few who did reported that deciding what to do and how to do it had not posed major problems. The team's decision about whether to make changes also depended on whether they or list members had the time and technical skills to implement the new technology. In one list, the development of a website had been initiated by a working group of members. Ultimately the project became a collaborative effort between those members and the listowners.
If a crisis occurs, and LOs believe that they need to impose more control over the list, they may consider changing the format of the list from unmoderated to moderated. However, based on reports from LOs in our sample, they may be reluctant to take any drastic action because of the extra work involved. As one LO wrote, “We had considered changing to a fully moderated mode recently, we discussed it among ourselves, and pretty much decided that this would require more time online than we have available. However, we could shift to this mode if a crisis (flame wars or whatever) developed.”
[edit] Managing Turnover among Members of LO Teams
In general, the lists represented in this survey appear to have stable management teams. Only three LO teams had lost members in the past 6 months. Team membership may change due to an LO's illness or death, but LOs may also decide to leave the team for other reasons. For example, an LO may be in remission and decide that he or she “wants to move on in life” and not stay immersed in the world of cancer. Or, an LO may “burn out” and simply not want to spend any more time attending to list management tasks.
LO team membership can change because new members are added or members decide to leave or are forced to leave due to health reasons. About half the teams in our study had attempted to recruit new members in the past 6 months. On seven lists, this was because they wanted to expand the team, not because any team members left.
[edit] Recruiting and training new listowners
LOs who had to recruit new members in the past 6 months reported they were very careful about whom they recruited because they only wanted to bring on to their teams “people who could handle the job well” and who could work well with the other members of the team. “Not a yes man--but open to discussion if we have a problem.” Finding the right person can take a long time. One LO commented that, after the death of the list's founder, she had yet to find anyone “who had either the medical expertise or the interest in taking on a larger role in management.”
Even when a new LO agrees to join the team, he or she may need to be trained. LO efforts at training appear to depend on how much experience new team members have had with the list and who among the more experienced LOs has time to do the training. For example, one LO noted that his list added two new LOs in the past six months, but since they were both long-term members of the list, they hadn't needed any formal training. An LO on another list said that he trained new team members because he had more time to do it than other experienced team mates. While our respondents did not provide much information about what new LOs needed to learn, comments in response to other questions suggest that much of this training is technical in nature, aiming to teach LOs how to understand and use L-soft Listerv commands.
[edit] Managing Researchers' Access to ACOR Lists
Because cancer survivors are heavy users of Internet support resources, researchers have viewed mailing lists as pools of potential research participants. ACOR is a nexus of cancer-related mailing lists, so researchers often contact ACOR LOs to ask whether they can recruit participants for studies through their lists. In this survey, only one participant commented about the number of requests for access the team had received. That LO estimated that the team had been contacted about 8 times in the past year.
Listowners varied in how knowledgeable they were about research. Most are not experienced at all with research. At the other extreme two LOs reported that their lists were quite experienced. One list had collaborated in two major research studies. Another had been formed as part of a research study, so the list composition included a relatively high proportion of health care professionals and researchers in addition to cancer survivors and caregivers. On this list, members shared information about studies--both recruiting and results.
To help all LOs protect their list members, ACOR established a policy regarding researcher access to a list and another internal research privacy policy regarding access to list members' email messages. Posting surveys and copying messages for data are not allowed without the permission of the writer. However, LOs report that sometimes unethical researchers do not ask for permission, but join lists to harvest members' email addresses. In those cases, the LO may not know what is happening unless a member complains. If an unauthorized researcher is detected, he or she is banned from the list.
Note: ACOR General Manager adds: In most cases of abuse of one list for research purposes, all other list owners are promptly notified of the violation of ACOR rules through ONCOLISTS.
[edit] ACOR Governance: Listowner Participation on Oncolists
As the number of mailing lists affiliated with ACOR increased, it became clear that LOs needed a venue for to discuss common problems associated with the technical operation and management of their lists. In 1996, ACOR's founder, Gilles Frydman, implemented ONCOLISTS, a mailing list specifically for LOs. In the survey, LOs were asked to describe how they participated on that list. They were also asked to comment on what they found most helpful about the list, what were the list's most significant challenges and to recommend ways for making the list more helpful.
The data in this section of the survey had the most unanswered questions and the fewest comments. Possibly, this was because answering open-ended questions was more work, or because these questions were at the end of the survey.
[edit] Listowner Participation Levels
The typical LO in our sample spent less than a half hour per week corresponding with peers through Oncolists (range 0-2 hours). Of these, three LOs reported spending 2 hours per week in this activity. Oncolists functions in much the same way as other ACOR lists: A few members post frequently; the majority post rarely. Two of the five LOs who added comments to their answers to this question reported that their levels of participation had fluctuated over time. One commented that she had been more active on the list in the past, but she had had to cut back due to health problems.
LOs' reports of relatively low levels of participation may be due to the way the question was phrased. (In a typical week, how much time do you spend each week corresponding with other LOs through Oncolists?) The aim of the question was to obtain information about how much time, overall, LOs spent reading, initiating, and/or responding to messages. However, participants appeared to have interpreted the word “corresponding” to mean only the amount of time they spent actually composing and posting messages to the list. Three LOs who added comments pointed out the difference between actively corresponding to Oncolists and tracking the discussion. These three wrote that they read all the messages, but posted to the list only when they had a problem or when the topic was relevant to them. One noted she “would not hesitate to comment on any topic where I could make a contribution.”
[edit] Factors Affecting LO Participation on Oncolists
The seven LOs who answered this question described a range of factors affecting LO participation on Oncolists. Four commented they became more active on Oncolists if the topic under discussion was personally relevant. That is, they would post messages only when discussions addressed current problems on their lists, or if another LO asked for information they possessed. One LO reported that his participation depended on how busy he was and whether any of his lists were having “more than the usual little problems.” Another wrote that her LO team tried to work out problems together on their own first. They would consult with other Oncolists members only if they were unsuccessful in their independent problem-solving. Another commented the level of participation of her LO team depended on whether the issue is a technical or group-management problem. When the list had technical problems, another more technically savvy LO on the team would bring the issue to Oncolists. Only one LO commented about being motivated to participate on Oncolists by “a spirit of sharing common problems, and feeling good about doing good works.”
[edit] Helpful Aspects of Oncolists
Of the ten LOs who answered this question, five noted the value of the technical information available through Oncolists. Three mentioned that the list provided moral support for weathering “LO woes” including emotional support when a listowner died. Various LOs commented generally that the list helped them with a variety of list management challenges by providing information about alternative models for running mailing lists. Two commented they appreciated that Oncolists members alerted them about “problem members.” Others mentioned they appreciated the list as a forum to discuss ethical issues, as a place to consult about researchers' requests, and simply because it helped to know that others “are devoted.”
[edit] Challenges to Oncolists Functioning
Eleven LOs answered this question. Six reported that difficulties accessing ACOR's administrator and technical staff posed significant problems, especially when technical problems arose. Two mentioned ACOR needed “more backup for problems and plans for the future.” Although LOs were accustomed to managing conflicts on their own lists, they had more difficulty resolving conflicts among themselves on Oncolists. One LO captured the sense of five respondents' comments, noting that, as an eCommunity, Oncolists faced the “same [problems] as on all lists--high volume, getting off topic, dragging out topics, spats.”
[edit] Recommendations for Making Oncolists More Useful
There was no consensus among the six LOs who answered this question about how well the list was functioning. Two commented they thought the list worked well and didn't need to be improved upon. “I think this group has a life of its own. I just watch the life process unfold.” Of those who made recommendations, two recommended that the list should provide more organized support for training new list owners, including a site with a summary of list commands. Three made recommendations for improving the ways LOs interact with each other on the list. Two commented the list would be more useful if some members were less judgmental and more tolerant of differences in members' opinions. One recommended that when LOs write to Oncolists, they should adhere to the policies they had on their own lists of limiting the amount of material quoted from earlier posts.
[edit] Conclusions
While this survey was intended to be a needs assessment, the information we obtained was more useful in characterizing LO views about factors that contribute to well-functioning lists. In our sample of ACOR lists, it appears these lists are meeting their goals of providing members with information and emotional support. They have adapted to the medium of asynchronous Internet text communication and to large group sizes, accepting the fact that relatively small, core groups of active members can serve the needs of a larger community of “quiet members” who monitor their lists but post only rarely. These lists appeared to be cohesive, with no unusual levels of conflicts between members. The lists also appear to have developed strategies for managing the emotional impacts caused when members face recurrences of their cancer or die, although these crises also result in some members leaving the lists because they can't tolerate the emotional burdens.
Clearly, LOs are key elements in the success of ACOR lists. In our sample, LOs' facilitation and management skills were developed through their experiences as members of their respective lists and through collaboration among LO team members. Their dedication to the technical management of their lists and their work behind the scenes are all necessary to sustain supportive electronic milieus. Further, well-functioning LO teams, the willingness of LOs to work on multiple LO teams, and access to technical assistance through Oncolists all contribute to list viability and resilience.
ACOR lists are run by volunteers, so making the commitment to be a listowner requires a strong altruistic motive. Some data suggests that motivations for being in the role change over time. While the intrinsic satisfaction of helping others is a strong motivator, in the absence of financial incentives it may be helpful to help find other kinds of rewards to acknowledge their service.
It is also important to find ways to minimize and manage predictable causes of LO role-related strain. Having enough team members to monitor lists is important. But LO comments suggest also that LO teams need to have the right composition. Teams need to have members who can contribute knowledge of cancer and skills in facilitation, group management, and the technical management of Listserv software. Team members also need to have the interpersonal skills to work well in informal virtual groups and to make decisions for their lists, including whether and how to intervene with difficult members when conflicts arise on the lists. Because LOs' ability to carry out their roles may change if their health status or interests change, the LO team needs to be on the lookout for members who might be appropriate to recruit to the team so that team strength is sustained. However, in this survey we did not obtain information about how LOs go about identifying and recruiting potential new team members and integrating them on their teams.
Many LOs reported Oncolists was serving a valuable role in helping them manage role strain by providing access to expertise to solve technical problems; by enabling cooperation across lists to maintain team strength; and by sharing information about how to manage their lists as eCommunities. Oncolists has the potential for playing a larger role in the governance of ACOR as a collaborative organization, particularly in strategic planning for its future development. However, because no participants commented about LO discussions on Oncolists about ACOR as an organization, we do not have data to know whether they occur or, if they do, the extent to which ideas generated through such discussions have been adopted.
[edit] Limitations of this Study
Fewer than 1 in 10 ACOR lists are represented in these data, so readers are advised to consider the summary presented above as suggestive rather than conclusive. In general, participants in this survey reported that their lists were functioning quite well. While this is encouraging, we do not know anything about ACOR lists that may be struggling. Similarly, even where respondents to the survey gave clues to challenges they faced, usually only a few listowners added comments to their rating answers, and in most cases, their comments were brief. Further, comments in response to any given question often addressed a variety of issues, so it is impossible to determine which might constitute dominant concerns across the lists. Because of these limitations, we invite ACOR LOs to contact us if they have questions or comments about this report.
