OncoLink's Senior Editor Julia Draznin-Maltzman, MD interviews Mark Salzer, PhD, Assistant Professor in the Department of Psychiatry at the University of Pennsylvania School of Medicine and Director of the University of Pennsylvania Collaborative on Community Integration to discuss his Internet peer support study for women recently diagnosed with breast cancer.
= Julia Draznin-Maltzman, MD, OncoLink Senior Editor
MS = Mark Salzer, PhD
OncoLink is proud to interview Mark Salzer, PhD. He is an Assistant Professor in the Department of Psychiatry at the University of Pennsylvania School of Medicine. He also serves as the Director of the University of Pennsylvania Collaborative on Community Integration: The Rehabilitation Research and Training Center (RRTC) Promoting Community Integration of Individuals with Psychiatric Disabilities (www.upennrrtc.org). In addition, he is the principal investigator for an Internet peer support study for women recently (within the past year) diagnosed with breast cancer. Dr. Salzer offers OncoLink readers a detailed explanation of the rational for the study, its design, research end points, and ultimate goals.
Thank you for agreeing to participate in this interview. We are very excited about the trial that you are running on our site and wanted to explain it to our readers in greater detail. I am certain that people have seen it but were not quite sure what it is and whether or not they were eligible. Please tell us about your trial: what are you looking for and how are you conducting it?
MS: We are examining and analyzing the peer support offered via the Internet by women who were recently diagnosed with breast cancer to others in the same medical situation without a health professional intermediary. Let me first explain that I have long since held an interest in peer support. I am a licensed psychologist and have had spend much of my research efforts studying peer support groups. There exist a number of studies suggesting that peer support, for breast cancer in particular, may lead to positive outcomes. These data point out that support provides more hope to the individual and a positive outlook. However, most of what we know about peer support comes from studies that analyzed face-to-face interactions. A recently published report noted that about 45% of women are familiar with face-to-face support groups, and only 25% of those actually attend these groups. It is our hypothesis that patients do not attend support sessions due to time constraints, the effort required, and the energy needed to actually get dressed, and go to the peer support group. Women who maybe undergoing chemotherapy treatment for their breast cancer, may not have the energy needed to do even simple things like get dressed and get out of the house. Not to mention the logistical obstacles such as money for transportation, parking, etc. There is also the potential embarrassment that someone may see you attending a support group. There maybe a myriad other personal factors contributing to why a patient may not attend the peer support groups despite their proven benefits.
Today, with the explosion of the Internet, its accessibility and availability, and the ease with which people obtain information, I thought that this might be a perfect solution for the patient who may want to participate in a peer support group but who cannot or does not want to travel. The Internet has filled the gap for women who don’t have the energy, time, resources, or personal inclination to travel in order to seek peer support. On a more global scale, the Internet has really provided us with a unique opportunity to address public health needs. With this as the background, we launched a feasibility and a demonstration study to examine the impact of the Internet on peer support. Given my background and expertise in peer support for individuals with mental illness, I was very eager and excited to use the same skills and knowledge and apply it to the breast cancer patient population.
I would like to see if we could use the Internet to recruit and randomize women into participating in a study that would critically analyze issues such as: Did peer support occur? How do participants share information and provide support for one another? How do they validate each other’s experiences? Do topics issues such as alternative therapies come up? How are they dealt with? The most fascinating aspect about this from a research perspective is that this interaction is totally unmonitored. A professional health care worker usually moderates face-to-face peer support groups. This individual often steers conversations in certain directions or provide professional advice on various issues that may arise.
The other unique aspect of our trial is that the peer support that goes on in this setting is totally unmonitored by a health care professional. There is no one facilitating discussion or moderating it in any way. There is no one to edit the comments that are made – everyone is free to speak their minds on whatever topic is significant to them. Even when I analyze the data, I look for the how women give and obtain support, not the content of the messages conveyed.
How does the study work technically? Is everyone on line at the same time? Are there regular updates of information distributed to all the members?
MS: Yes, there are a number of ways to do this. You could use the idea of a chat room, where you decide on a particular time and all of the participants log on at a specific time. The other way to do this is using a bulletin board. The option we took is a list serve. I felt that this was the best option to allow for passive participation. If women choose not to "talk" but rather just listen, or in this case, read, what others are saying. In chat rooms and bulletin boards people need to sign in via a password, a list serve just emails participants the comments. Another advantage of a list serve is that it uses email rather than a Web site. Most people are familiar with email – they use it, they are familiar with it and not intimidated by it.
What are the privacy implications? Could anyone just read this?
MS: No. Every woman who participates in this trial gives us her personal email account. The comments are emailed to all trial participants to read at their leisure. So, it is private in the sense that only those who are actively participating in the study are reading this. That being said, this is private only to the extent that your email is private.
How do you sign up participants? Is there informed consent over the Internet?
MS: No, the consent process is done over the telephone. Women sign up on line and provide their email address, telephone numbers, and other minimal demographic data. Then my staff contacts them to make sure that they are indeed eligible and we go over the consent form on the phone and well as the initial interview. The actual support group if you will, the discussions these women have are emailed to all participants.
The idea is, once the initial intake is done and a woman is found to be eligible to participate, she is randomized into a group of women who either participate in the Internet support group or those who do not participate but use the Internet as a resource for education and gathering information. This second group becomes the active control group for this randomized study. All interviews are conducted on the phone but all data to be analyzed is collected from the on-line interactions.
How did you recruit the participants and how many have signed up thus far?
MS: Well, we advertise on OncoLink and we have patient representatives who work with both patients and clinicians (doctors/nurses). They tell newly diagnosed patients about this opportunity. The study has been open from November of 2004 and thus far we have somewhere in the order of 40 women who are actively participating. We hope to get a total of 100 women for our study. Our inclusion criterion allows us to include only those women who were recently diagnosed with breast cancer. That is to say, those diagnosed within the past year. We decided that those who were recently diagnosed have higher distress and anxiety about their disease than those who are survivors and are many years out from their initial surgery and therapy. Also, to keep the analysis a bit cleaner, we allow only those women with early stage disease: stage I and II. The reason for this is that women with more advanced disease may have more complicated emotional issues. They are really dealing with morbidity and mortality issue. These are complicated research issue and would be difficult to analyze in such a model.
OncoLink: I suppose one potential critique of this study may be that it excludes a sizable population of women who may not be able to afford a computer and an Internet connection; or the elderly who are not technologically savvy and certainly those who cannot read.
MS: Yes, that is called the Digital Divide. It is still definitely exists but it is shrinking every day. Some of the more recent data suggest that what we thought were the "last groups" not using the Internet, are in fact, getting on-line. That is the non-white; lower income individuals are also using the Internet more and more. In the next five to ten years, I expect this divide will be virtually nonexistent.
OncoLink: What do you think are the weaknesses with this trial?
MS: Well, we did consider the possibility that some newly diagnosed women may not be ready to discuss their issues with others. Some individuals may need time to process the implication of their diagnosis and to deal with their treatments. The fact that we restrict our participants to be the newly diagnosed women may exclude some key participants. Also, some people may fault the Internet for being too impersonal for such a task (support). You can’t see any of the non-verbal communication, for example. Personally, I am not sure this is so. In fact, I would argue that the anonymity that the Internet affords, allows women to be more candid and less inhibited. And, not being able to see one another takes out the physical properties that could potentially interfere with communications. Once all this is removed, participants are free to really open up their thoughts and feelings. In many ways, this potential disadvantage may in fact be a benefit.
What do you consider the trial strengths?
MS: If Internet support is feasible, this opens up enormous possibilities for patients. Internet support groups are very attractive to patients as they could participate on their own time, in their homes, even in their pajamas. There is a tremendous benefit to have this tool that enables people to participate at their won comfort and leisure. Using the Internet will enable sick people and those who cannot travel to obtain the support that they may need. These may be in fact, the individuals who need the support the most. From the more pragmatic side, Internet support groups are cheaper than face-to-face interactions. Clinics, hospitals, and health care facilities do not need to rent space,
What is your vision for the future? How could we use technology and the Internet more?
MS: Technology and the Internet is a great potential toll that opens up resources for people with cancer. It allows individuals to share information, to validate problems, to normalize experiences. All these make us better and more engaged consumers. We become more engaged in our treatment and therapy. The Internet will enable us to ask more questions. Then wonderful thing about the Internet is that it is accessible and available to everyone.
would very much like to take my work in the direction of more mutual aid in cancer rather than support groups. This is more natural and what already occurs.