The study is a joint research project of the University of North Carolina at Chapel Hill (UNC-CH) and the Association of Cancer Online Resources (ACOR).

We want to learn what, if any, are the measurable effects of participating in ACOR's cancer-related mailing lists.

Here are some examples:

• Does participating in listservs affect cancer patients, survivors, and caregivers' quality of life?
• Does it affect their attitudes about health and health care?
• Does it affect their relationships with their physicians?

We know that online discussion groups are becoming more and more prevalent, but we know little about how being in these groups affects people. Health eCommunities will be the largest study to date of online participation in support.

The Robert Wood Johnson Foundation (RWJF) awarded grant funding to UNC-Chapel Hill and ACOR for a two and a half year project. RWJF received 600 "letters of intent" from organizations planning to submit proposals. This was one of 18 projects funded under their Health e-Technologies initiative. For more information about the grant program, visit #2

We believe that what we learn can be used to improve online information services and communities, and to make them even more useful to people with cancer and those who care for them and about them. This is very practical research that is aimed not only at understanding but also at improving processes.

Yes. This is a study of subscribers on 15 ACOR listservs and their experiences. We selected these listservs, because ACOR listservs are the largest anywhere, cancer is a vitally important topic, and ACOR is a highly respected, valued research partner. However, we believe that what we learn, and the methods we use, may be of use to others, both inside and outside of ACOR and the cancer community.

Limited funding means that we can only handle information from a limited number of people. We chose specific listservs to provide as broad a range of participants as possible. For research purposes, we have to get enough people from any one listserv to compare one listserv to another when we get to the point of statistical analysis. It is possible that, for example, people with different kinds of cancers have different experiences, needs and expectations.

Yes, protecting privacy is our highest priority. We have taken extraordinary steps to make certain that survey data cannot be connected back to individuals who filled out a survey questionnaire, not even by our own researchers. Security for these data will be substantially greater than what is required by any of the regulations governing data privacy. There are several levels of privacy protection. Our project and survey are approved by the Institutional Review Board at the University of North Carolina at Chapel Hill. The board exists to protect the rights of the people being studied by University researchers and has very rigorous standards of privacy protection. In addition, ACOR itself has adopted very strong privacy protection. We will do everything possible to assure the protection of every participant.

We will conduct two kinds of research:

• We will gather data via a survey questionnaire that most people will complete online. We are especially interested in such topics as patient-provider communication and relationship, quality of life, how members use the listserv, and methods members use to cope.
• We will perform expert analysis of archived messages to the lists. The analysts will be looking for similar topics to the ones above, but will also be able to see these issues in their normal context.

First, the survey will be pilot-tested to make sure that all of our procedures and software are working well, and that the survey questionnaire is as easy as possible for participants to use. A small number of cancer patients who have just joined a list will participate in this pilot.

Next, the full survey will be conducted. There will be 3 separate times when participants will fill out survey questionnaires. This allows us to measure changes that take place over time. Both new list members and experienced list users will be invited to fill out the online survey. For those participants who are cancer patients and who live in the United States, we have a modest budget to offer telephone interviews as an alternative to completing surveys online. However, because of budget implications, we must restrict telephone surveys only to those people who absolutely cannot complete the forms online.

The message analysis research will be performed by analyzing what people say on the lists. Researchers, aided by special computer software, will "code" the messages in selected list archives so that we can learn more about what people talk about in the lists, and what the health experiences of various list users have been. By combining this method with the survey, we will best be able to understand the experience of listserv members.

Some listmembers do include personal details, including their names and parts of their medical histories. None of our reports or analyses will contain any of these personally identifiable data. People who wish their messages to be left entirely out of the analysis will have their messages pulled from those we are analyzing from whatever date they notify us. (However, we can't go back and "un-analyze" any messages we already have. We will also follow the policy in #2, but we should point out that ACOR wants all its subscribers to be aware that archives are essentially public, and the only way to absolutely guarantee anonymity is never to post a message.

As mentioned above, no names, including screen names, or personal information will be used in the reports of the analysis. You have the right to ask for any future messages to be ignored by analysts. Your wishes will be respected. However, there is no way to eliminate your earlier messages from analysis after the fact, just as there is no way to prevent anyone from visiting the archives and reading them. This is one of the properties of listservs. The person leading this part of the project, Dr. Andrea Meier, is a highly trained social work researcher, who is very respectful of participants' privacy. The main purpose of the archive analysis is to learn whether there are important issues that we have missed on the surveys.

We hope to see things that we might not have anticipated when we created the survey questionnaire, or things that we might have had to remove from the questionnaire to keep it from being too long. It's hard to predict those, but experience shows that, for example, sometimes events in the news, events that we could not have anticipated with questions on the questionnaire, can have an impact on what people talk about on listservs and even how they feel toward a listserv.

No. If you can visit a website with your Internet browser, you should be able to take the survey.

Our testing so far indicates that, on average, it will take 15 minutes to complete a survey questionnaire. Most questions are very easy to answer and will go quickly. The 3 questionnaires will be separated by several weeks. Participants will be reminded when it is time to take the next survey.

You will be able to save your questionnaire and come back to it. But we would prefer to have it completed within a few days of beginning it, so it can provide a better snapshot of that point in time.

As with many constraints, the short answer is money. The purpose of offering the telephone option is to permit people to take the survey even if they don't feel well enough to sit at a computer. Limited funds mean that we can't make international calls. We absolutely must constrain these resources to those who must need the telephone call to participate. The RWJF does not permit funds to be spent outside the U.S.

Yes. Gilles Frydman, ACOR's founder and President, suggested the project to UNC and has been a partner from the beginning. ACOR is producing the online survey software, and ACOR will be responsible for accumulating the survey data, maintaining the anonymity of survey participants, and transmitting the data to UNC-CH. Listserv owners have been involved since before the original proposal was submitted to the Robert Wood Johnson Foundation. We will continue to consult with list owners throughout the course of the study.

While we welcome any suggestions and comments, most of the questions have been "validated" in their current form. That is, they have been used on other studies and have been shown to measure what they are intended to measure. Changing them would mean that we couldn't compare this study's participants with other people, which would limit the things we could conclude about being in a listserv versus other forms of activity that might affect health experience. That being said, we always welcome feedback. While we may not be able to change wording for this survey, we might for future ones.

We had planned to offer participants a chance at winning one of several $20 gift certificates. However, the UNC review panel that approves study designs has recommended against offering these incentives unless everyone can have one. Unfortunately, funds don't permit a prize for every participant. We have decided upon a fair solution in which everyone gains something from participating. We have arranged to make a monetary contribution to ACOR for every person who takes the study. This way, ACOR subscribers can give back to their online community. The donations will help ACOR grow and serve its users even better. Also, we will prepare summaries of the results and share them with all ACOR subscribers as soon as they are completed. As articles are published about the study, list owners will be notified so that they can notify their lists. These days, most of the articles will be available electronically.

Your best first contact will be Tara Strigo, the study coordinator, at Question #2 (Please mention ecommunities in the subject field of your email.) Ms Strigo will direct your question to the person most able to answer it.

We value your ideas and input. Health eCommunities is a partnership between ACOR and the University of North Carolina at Chapel Hill. It cannot be done without the active participation of listowners and subscribers. Please get in touch with us anytime.

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Page title: Health eCommunities - FAQ
Revision ID: 3679
Date accessed: Tuesday, January 6, 2009
Stable URL: http://lo-wiki.acor.org/index.php/Health_eCommunities_-_FAQ
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