Dr. Barbara Rimer is the Principal Investigator on the project entitled Health eCommunities: The Impact of List-servs on Cancer Patients at the University of North Carolina.

What is unique and/or innovative about your study?
Health eCommunities is the largest study to date of online cancer mailing lists. Our study will provide the most comprehensive view about how the lists function and the effects they have on users. We also hope to provide much-needed information to other researchers about the challenges of Internet surveys so that more and better research can be done because of this project.

We have developed a number of interesting and useful innovations while developing project survey materials. For instance, by taking a “time stamp” each time someone enters the survey or clicks to the next page, we can track their progress. When we analyzed the time stamps during study pre-testing, we were able to identify the pages that gave respondents the most difficulty and changed them. The final baseline survey was on average about a minute and a half shorter than the original; this resulted in fewer break-offs (people who stop taking the survey and never come back to finish it).

Another innovation is the application of participatory research to an online community. The Association of Cancer Online Resources (ACOR) and UNC have been true partners in the research process. The President and CTO of ACOR have been involved in every step of survey development and implementation. Moreover, they are continuing collaborators who inform us about problems people are having with the instruments and the many ways in which features of the Internet present challenges to the potential respondents and the research team. The involvement of ACOR leadership, including the list owners, has made Health eCommunities a stronger project. While community-based participatory research is a popular concept, to date, there are no examples of the scope of Health eCommunities for how Community Based Participatory Research (CBPR) can be applied to online research.

How is your project progressing so far?
We have collected data for over 500 new patient subscribers to the 15 participating lists. We are continuing to recruit new subscribers as they sign up for the participating lists (until we reach our goal of 1680), and we are sending one and four month follow up surveys to the current participants. We also have collected data from over 700 ongoing subscribers, both patients and caregivers.

From these preliminary data, we have found several interesting findings. Subscribers seem to use the lists more for information than for support, although support is a very important aspect of list participation. Although there has been a lot of concern that information patients obtain on the Internet will undermine patient-physician relationships, our data provide some reassurance in this area. Subscribers say that the information they find on the Internet either does not affect their relationships with providers or improves these relationships.

We have also completed coding qualitative data from 10 lists. The qualitative findings complement survey findings, but also provide extra insight into the differences between the lists. ACOR list subscribers on all sampled lists ask for and provide quite a bit of information and support, but some lists are much more oriented towards one or the other. As a generalization, it appears that the lists for cancers that are less common are used more for information and support than those for cancers with higher incidence, such as prostate cancer. This is understandable in view of the fact that patients with rarer cancers may have fewer sources of information and support in their own support systems and communities.

What prompted you to explore this research?
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. There are many unanswered questions about online support and its effects on quality of life, patient-provider relationship and health outcomes. Also, though millions of people turn to the Internet for health information every day, much of the promise of the Internet remains just that. We are interested in exploring that promise to provide feedback to the online and health care communities about this major new force in health care. We aim to open a wider window on mailing lists, a world that is increasingly populous and yet not well understood by the general population. Because Gilles Frydman of ACOR and I had served on a health communications committee for the National Cancer Institute, it was natural to begin talking about a response to the RWJF announcement about new technologies.

How would a typical end-user utilize the final product/results of your research?
ACOR plans to use the results to better its practices in training, communication and policy. This research will have helped to improve the delivery of service to all people - the best form of continuous quality improvement. We are committed to helping to develop tools to disseminate our findings. The mailing lists are an organic, living, changing world; they will continue to evolve. As in so many other aspects of medicine, cancer serves as the model, but the lessons of this research will transcend cancer to the millions of others in online health communities. Because the research findings will have relevance beyond the list owners, ACOR and even the subscribers to the lists, we will publish study results in journals targeted to the different groups of interest, e.g. physicians with regard to findings about the influence of using the lists and the Internet on patient-doctor relationships.

What are the greatest challenges in eHealth and more specifically, your project?
eHealth research presents many unexpected challenges that are very different from those experienced in other types of research. Our major challenges have been in methodology, partnerships and response.

Online survey construction is especially challenging when creating surveys for ill populations. We had to consider how survey format might look and feel to patients who were very ill. Even something as apparently simple as clicking on a circle to indicate an item as the response choice can become difficult for a patient who is fatigued from the disease and/or treatment. To date, most Web design programs do not permit sufficient design flexibility.

When e-mail invitations are sent, many will not be delivered for a variety of reasons, such as powerful spam blockers, people who changed their addresses, people who no longer use the mailing list but have not officially unsubscribed and people who died or are now too ill to participate. Typical methods for calculating response rates have to be altered for Web surveys where the denominator may not be known and where there may be many people who would be ineligible for the survey were they to be interviewed.

Any partnership involves challenges, and this is clearly true for one between a university and a non-research organization like ACOR. The ACOR collaborators are all volunteers who are writing code for the survey or managing lists, in most cases, with no monetary compensation. This means that many tasks take longer than expected, and delays sometimes occur. We also have had to learn each other’s perspectives, cultures and languages.

Interacting with the Institutional Review Board (IRB) also has been a challenging experience, for everything from how we constructed the invitation to our requests to use incentives as a means to increase response.

In what ways would you like to see eHealth evolve?
eHealth must evolve in several ways. First, it must become more rigorous and best practices should be developed and shared. IRBs must become more familiar with the methods and distinguish research with real potential harm from studies that carry little potential risk. Also, it appears that list-servs may be under-utilized by minority patients. We aim to understand whether this is a function of their presence on the list and unwillingness to participate in research or under-use of the lists. In either case, there is a problem that must be addressed.

How do you stay informed of advances and innovations in eHealth?
We usually perform literature searches on PubMed, CINAHL, PsychINFO and other online databases on a monthly basis. We also review the major Internet-related research reports from sources such as the Pew Internet and American Life Project. The list owners of the participating ACOR sites are themselves great source of up-to-date information. For instance, when the recent Cochrane report regarding Internet research was released, the list owners began a discussion on our study-specific mailing list immediately. We share news articles among ourselves and also appreciate resources that are shared from David Ahern, Judy Phalen, Jen Neiley and others.

Great update – thank you Barbara!

We’ll hear from Aurora Health Care's Dr. Paul Hartlaub in January of 2005.