Recent rapid responses
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Eysenbach et al reveal the lack of research into electronic support groups (ESGs) despite the large number of groups in operation. They note that Yahoo!Groups, a major provider, lists almost 25,000 support groups . With little even known about what groups exist, we carried out an audit of cancer-related groups at Yahoo!Groups in 2002.
Searching with cancer-related terms, we identified 1164 English- language groups relevant to cancer patients/carers. However, 748 were inactive (defined as <5 messages in the first quarter of 2002) and most of those had never been active. Of the remainder, 74 were about fundraising rather than support groups. With further exclusions, we identified 309 active discussion groups for support/information around the experience or treatment of cancer or cancer sequelae. On similar percentages, this suggests the figure of almost 25,000 in the paper by Eysenbach et al for Yahoo!Groups across all conditions is misleading and represents perhaps only 7000 active support groups .
That said, Yahoo!Groups is only one provider of ESGs. Given their nature, it is impossible to produce a complete list or total number of ESGs and estimates vary widely. For example, various resources offer lists of cancer-related ESGs, notably the Association of Cancer Online Resources <http://www.acor.org/index.html> with 132 groups. The National Alliance of Breast Cancer Organizations <http://www.nabco.org/index.php/index.php/353> lists 100 groups, most specific to breast cancer. However, there was only minimal overlap between these two lists and our results, suggesting over 1000 English- language, cancer-related groups could exist.
The diversity of ESGs is also very important. Although research has concentrated on ESGs for breast cancer [1, 2], we found 58 different cancer types represented. Many groups are very specific in their coverage: being for rarer cancers (e.g. chondrosarcoma, mycosis fungoides), specific stages or treatments of more common cancers (e.g. advanced thyroid cancer, hormonal ablation for prostate cancer), specific groups with cancer (e.g. Muslims, teenagers), or specific groups with certain cancers (e.g. war veterans with prostate cancer, lesbians with breast cancer). Of the 309 groups identified, 89 were not specific to cancer, but were of relevance to cancer patients/carers (e.g. chronic pain, bereavement). Overall, the median number of subscribed addresses (which over-estimates active participants) was 48 (interquartile range, 22-134).
1. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ 2004;328:1166-.
2. Klemm P, Bunnell D, Cullen M, Soneji R, Gibbons P, Holecek A. Online cancer support groups: a review of the literature. Computers, Informatics, Nursing 2003;21:136-142.
Henry W W Potts, lecturer in health informatics, Centre for Health Informatics and Multiprofessional Education (CHIME), University College London, Holborn Union Building, Highgate Hill, London N19 5LW; e-mail <firstname.lastname@example.org>
Amanda J Ramirez, professor of liaison psychiatry, Cancer Research UK London Psychosocial Group, Institute of Psychiatry/King’s College, London, Adamson Centre for Mental Health, St Thomas’ Hospital, London SE1 7EH
Competing interests: None declared
Competing interests: None declared
Centre for Health Informatics and Multiprofessional Education, University College London, N19 5LW
18 May 2004
I thank Barak and colleagues for his letter, which echoes many of the problems with quantitative studies we pointed out in the review. Contrary to what the letter suggests: I am not dismissing virtual p2p groups as ineffective – in fact, in this and other papers I made clear that I personally believe that p2p groups are perhaps the single most important aspect of the Internet with the largest impact on health . The systematic review was designed to answer the question whether we have evidence for this beyond testimonials.
Barak criticizes our “rigorous and unwarranted inclusion criteria”. Rigor is hardly a negative term in the context of a systematic review, especially in a field that is dominated by narrative reviews without any clear inclusion criteria, or editorials and viewpoint papers of self-help advocates selectively citing studies that seem to support their own biases or promote their books or websites on Internet based self-help. Barak argues that our inclusion criteria are “unwarranted” because they don’t take into account “combinations of online support and the use of other help resources”. This is wrong – our inclusion criteria did cover “combination studies” where online support was a co-intervention (we found 32 of those). Still, the majority of these researchers failed to show an effect. In order to support the claim that a “combination is most desirable” Barak cites the study by Cummings  which was a cross-sectional survey among a sample of p2p participants. Such surveys were in fact _not_ included in our systematic review, because cross-sectional surveys tend to be biased (self-selection bias, volunteer effect) and cross-sectional surveys (where one group of participants reports more benefits from online support groups than another group) raises questions of causality: an association of two variables is not causality.
We actually think that the scope of our review was very comprehensive, as we transcended traditional systematic reviews which focus on RCTs, by including all kind of comparative or longitudinal study designs, includigng before-after, interrupted times series, cohort studies, and non-randomized controlled trials. We also systematically extracted qualitative information (see online tables).
We do not doubt that surveys and qualitative/ethnographic studies add information and can inform the development of guidelines, but they were simply not in the scope of this review, which focused on effectiveness measures and aimed to highlight some of the problems in measuring hard outcomes beyond sampling opinions and testimonials.
As Gustafson & Wyatt mentioned in their editorial , testimonials, website hits (and – one may add – biased surveys of a self- selected subgroup of users) may not be enough to evaluate ehealth interventions.
In the second part of their criticism, Barak and colleagues seem to contradict themselves several times. On one hand they seem to accuse the researchers of the 45 studies we analyzed as being “paternalistic” for addressing questions on effectiveness in the first place, and seem to suggest that “professionals are not responsible for maximizing or delivering benefits in a self-help system“. On the other hand they put together guidelines for patients themselves, and they recognize that self- help does not exist in a vacuum.
While we also believe that some or most virtual p2p interventions may work equally well or better without a health professional, we do think that it is the responsibility of health professionals to understand and research these systems. As Barak said it himself, “self-help does not appear in a vacuum, and must be complemented by other systems of help”, and we need to understand self-help for exactly this reason. We think that – even if one agrees that self-help should be left to laypersons without any involvement of professionals or health service researchers -, it is a legitimate question and a legitimate call to arms for further research, to evaluate how the ideal self-help system should look like, for whom and under what circumstances it is beneficial, and what (if anything) professional systems can do to complement them or help people to help themselves.
In addition, as increasingly professionally led systems with p2p components are designed, such as web-based personal health records or support systems e.g. CHESS, it is legitimate and necessary to ask how these components should be designed in order to maximise benefits and reduce harm. Researching these systems does not automatically mean that professionals should become directly involved (i.e. moderate the communities), but at a minimum professionals need an understanding and awareness of the benefits and limitations of such systems and how they fit into the professionally led system. This includes questions such as under which conditions and for whom virtual self-help mechanisms work best, whether and for whom moderated communities are more helpful than unmoderated groups, or for whom face-to-face groups are more efficient than virtual groups.
The paternalism argument against researching the conditions of self- help groups is also ironic in the light that Barak and colleagues have developed guidelines for consumers on using self-help groups. If we agree that guidelines in principle are useful, shouldn’t these guidelines be based on solid research? Don't we agree that the current "guidelines" cited by the letter authors are quite coarse and leave many questions open? Putting together evidence for guidelines is hardly paternalistic. I agree that research does not only mean quantitative, but also qualitative research, but again, reviewing and reporting the vast body of qualitative research or putting together research-based guidelines was not within the scope of this particular paper, which may however serve as a useful starting point for future research such as doing a comprehensive qualitative review project and/or to compile evidence-based guidelines.
1) Eysenbach G. The impact of the internet on cancer outcomes. CA Cancer J Clin 2003;53: 356-71.
2) Cummings, J. N., Sproull, L., & Kiesler, S. B. (2002). Beyond hearing: Where the real-world and online support meet. Group Dynamics, 6, 78-88.
3)David H Gustafson, Jeremy C Wyatt. Evaluation of ehealth systems and services. BMJ 2004;328:1150
Competing interests: No competing interests. This includes that I do not publish any books on self-help, run no self-help websites, and earn no money with professional online mental health.
Competing interests: None declared
We commend Eysenbach and his associates for their intensive investment in searching, collecting, screening, and investigating studies on Internet peer-to-peer support groups. These online communities have become a common source of emotional support for millions of people in distress. The authors' exhaustive search and careful analysis have been badly needed, and warrant appreciation from the scientific and clinical community.
In some ways we are troubled, however, by the rigorous and unwarranted inclusion criteria used by these authors. For their analysis, Eysenbach et al. made a careful attempt to include only well-designed research studies that utilized specific experimental methodology. This approach, in their view, enabled valid assessment of the sole, incremental effects of peer-to-peer support. In our view, the authors have isolated online support intervention effects from reality. Emotional support is not provided in a vacuum. Online support—by all common theories, methods, and applications—is most commonly offered to people as an adjunct to other available resources. Actually, supported by empirical research, a combination of online support and the use of other help resources is considered most desirable (e.g., Cummings, Sproull, & Kiesler, 2002). We strongly believe that online emotional support may be an effective means of relief, but not as an isolated remedy. Although full control of variables is commonplace among experimental psychologists (for good methodological reasons in executing pure experimental designs), it is far less important in research that seeks to investigate the psychosocial effects upon real people in distress in their natural social environment.
Secondly, although clinicians and scientists strive at obtaining reliable evidence, we question whether certain types of quantitative research on Internet peer support groups are desired, needed, or even possible. Eysenbach and associates wrote: "Given the abundance of unmoderated peer to peer groups on the internet, research is required to evaluate under which conditions and for whom electronic support groups are effective… (p.1166).” However, as we see it, research of online peer-to- peer support groups by professionals is rather paternalistic, and it completely misses the point that the Internet environment is viewed by its users as a self-empowering medium. Users do not necessarily want, or need, professional researchers present in peer-to-peer support groups, which are run by ordinary people for ordinary people. Many of these groups thrive precisely because there are no professionals in them. Moreover, we question whether researchers can truly “evaluate under which conditions and for whom (p. 1170)” online groups are effective given the inherent nature of these groups, characterized by minimal control, open-door approach, and unidentifiability (e.g., Wright & Bell, 2003). Eysenbach et al. also stated that research is needed on “how effectiveness in delivering social support electronically can be maximised (p. 1166)" but disregarded the given non-paternalistic, self-help nature of these groups. The problematic attributions made by Eysenbach et al. make the premise of their analysis shaky, perhaps unjustified. Moreover, we argue that professionals are not responsible for maximizing or delivering benefits in a self-help system and ought to practice appropriate boundaries. The online peer-to-peer support group environment would apparently benefit the most by nurturing, respect, and privacy, rather than intrusive external interventions in an emotionally vulnerable setting. Thus, qualitatively- oriented and ethnographic methodologies (Hine, 2000) seem to better fit this special area of research in cyberspace.
Members and leaders of online groups could, however, benefit from guidelines derived from extensive field experience. Published indicators of quality would help them educate themselves on factors that might improve their online peer-support experiences and minimize their risk. Examples of such guidelines are provided by Grohol (2001), Madara (2004), and Pector (2004). These resources, as well as other writings on online support groups which based on experience and appropriate research (e.g., Alexander, Peterson, & Hollingshead, 2003; Lieberman & Russo, 2001 -2002; Till, 2003), note that the tone of interaction depends on the quality of moderation by either naturally emerging leaders or professional moderators. Most of the studies in Eysenbach et al.’s review, however, involved professional moderation, whereas the vast majority of Internet groups are unmoderated. Indeed, the rapid disclosure of intimate personal details fostered by the online disinhibition effect (Suler, 2004) may leave participants vulnerable to deception, coercion, anger, and criticism that can arise in unmoderated groups. We believe a review of existing qualitative and quantitative studies would offer valuable advice to self- help communities on how best to create a positive, healing environment and avoid abuse.
Numerous systematic and nonsystematic observations—and our own clinical experiences—reveal that online support groups provide much relief to people who struggle with a variety of mental- and health-related difficulties. Most of these people do use other resources of variable quality, from personal therapy, to medications, to support by family, to worship, to use of amulets, to escape into drugs or gambling. An investigation that aspires to closely study effects of online support should not ignore or adjust for these other resources, but should integrate them into the research design. This results in ecological validity, documenting the extent to which the conditions under investigation reflect real life and natural circumstances. Contrary to Eysenbach et al., we believe that interaction effects of participation in online support groups and other sources of help have significant impact and should be included in systematic analyses. Lastly, we encourage thoughtful methodical reviews of qualitative research already conducted on online groups. Qualitative studies have described characteristics of those who use such groups, the process by which self-help occurs, perceived benefits, potential risks, and the types of individuals that may be helped or harmed by online support communities. Such information, in addition to appropriately- and specifically-designed quantitative studies, will help health professionals intelligently advise patients who use online support resources.
Alexander, S. C., Peterson, J. L., & Hollingshead, A. B. (2003). Help is at your keyboard: Support groups on the Internet. In L. R. Frey (Ed.), Group Communication in Context: Studies of Bona Fide Groups (pp. 309-334). Mahwah, NJ: Erlbaum.
Cummings, J. N., Sproull, L., & Kiesler, S. B. (2002). Beyond hearing: Where the real-world and online support meet. Group Dynamics, 6, 78-88.
Grohol, J. (2001). What to look for in quality online support groups. Retrieved on May 16, 2004, from: http://psychcentral.com/archives/support_groups.htm
Hine, C. (2000). Virtual ethnography. London, UK: Sage.
Madara, E. (2004). How to develop an online support group or Web site. Retrieved on May 16, 2004, from: http://mentalhelp.net/selfhelp/selfhelp.php?id=863 Azy Barak
Pector, E. (2004). Internet support networks: Suggestions for a safe & sound experience. Retrieved on May 16, 2004, from: http://www.synspectrum.com/support.html
Suler, J. (2004). The online disinhibition effect. Retrieved on May 16, 2004, from: http://www.rider.edu/suler/psycyber/disinhibit.html Till, J. E. (2003). Evaluation of support groups for women with breast cancer: importance of the navigator role. Health and Quality of Life Outcomes, 1, (16). Retrieved on May 16, 2004, from: http://www.hqlo.com/content/1/1/16. Wright, K. B., Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer- mediated communication theory. Journal of Health Psychology, 8, 39-54.
Azy Barak, Ph.D.
Fellow, International Society for Mental Health Online
Departments of Psychology and Education, University of Haiha, Haifa 31905, Israel
John M. Grohol, Psy.D.
Fellow, International Society for Mental Health Online
39 Colby St. Bradford, MA 01835
Elizabeth Pector, M.D.
1220 Hobson Road, Suite 216, Spectrum Family Medicine, Naperville, IL 60540
Competing interests: None declared
Competing interests: None declared
Departments of Psychology and Education, Unversity of Haifa, Haifa 31905, Israel