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Journal of Communication in Healthcare Volume 3 Number 3-4

Promoting and participating in online health forums: A guide to facilitation and evaluation for health professionals Laura O’Grady*, Jackie Bender**, Sara Urowitz***, David Wiljer**** and Alejandro R. Jadad***** Received: 20th February 2010 *Departments of Health Policy, Management and Evaluation; and Centre for Global eHealth Innovation, University Health Network, Toronto M5G 2C4, ON, Canada Tel: +1 416-978-7994; E-mail: [email protected] **Dalla Lana School of Public Health, University of Toronto, Centre for Global eHealth Innovation, University Health Network, Toronto M5G 2C4, ON, Canada Tel: +1 416-340-4800 x 8116; E-mail: [email protected] ***Educational Informatics and Caring Voices, Oncology Education, Princess Margaret Hospital/University Health Network, Toronto M5G 2M9, ON, Canada Tel: +1 416-581-8616; E-mail: [email protected] ****Knowledge Management and Innovation, Oncology Education/Radiation Medicine Program, Princess Margaret Hospital, University Health Network, Toronto M5G 2M9, ON, Canada Tel: +1 416-581-8601; E-mail: [email protected] *****Departments of Health Policy, Management and Evaluation; and Center for Global eHealth Innovation, Toronto, Canada; and Anesthesia; and Dalla Lana School of Public Health, University Health Network and University of Toronto, Toronto M5G 2C4, ON, Canada Tel: +1 416-340-4800 x 6903; E-mail: [email protected]

Journal of Communication in Healthcare Vol. 3 No. 3-4, pp. 246–257 © W. S. Maney & Son Ltd 2010, 10.1179/175380710X128706237 76478

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Laura O’Grady is actively researching the use of collaborative learning theories and Web 2.0 applications such as wikis and other social networking tools to build online environments that support collaborative learning. Other areas of expertise involve means of depicting credibility in web-based health content. Laura specializes in a variety of techniques designed to improve quality and performance of knowledge translation networks, including quantitative and qualitative measures as well as usability testing. She was a Canadian Institutes of Health Research (CIHR) post-doctoral fellow at the Centre for Global eHealth Innovation, University Health Network and obtained a PhD in education and a Master’s degree in Measurement and Evaluation from the University of Toronto, as well as a Bachelor’s degree in psychology from McMaster University. With varied experiences in hospitals, research institutes and the non-profit sector

Laura is committed to both interdisciplinary work and research. She has collaborated with a wide variety of researchers and clinicians and been funded by CIHR, Social Science and Humanities Research Council (SSHRC) and the Canadian Breast Cancer Foundation. She has also written a variety of publications in informatics, social science and medical journals. Jackie Bender is a social and behavioural scientist at the Centre for Global eHealth Innovation at the University of Toronto. Her research is focused on issues related to health informatics, knowledge translation, and patienthealth professional communication in the management of chronic illness. She is involved in several studies examining the use and impact of social media and networking technologies among cancer patients and health professionals. She specializes in quantitative and qualitative

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methodologies, knowledge synthesis and usability testing, and has worked in various health care settings including acute care hospitals, research institutes and community support agencies. For her PhD in Public Health at the University of Toronto, Jackie examined the role of online communities as a source of supportive care for breast cancer survivors, supported by CIHR doctoral fellowships in Health Care, Technology and Place, and Cell Signaling in Mucosal Inflammation and Pain. Her MSc, also from the University of Toronto examined the information needs of breast cancer patients in pain and led to the development of an Internet-based patient education and coaching tool. Jackie obtained a BSc in Physiology and Neuroscience from McGill University. Sara Urowitz, PhD is the Manager of Educational Informatics and ELLICSR: Collaborative Centre for Health, Wellness and Cancer Survivorship, with the Princess Margaret Cancer Program/University Health Network. Dr. Urowitz is also an assistant professor in the Department of Psychiatry and Health Policy, Management and Evaluation (status only) at the University of Toronto. Her portfolio includes leading a national social networking initiative for cancer survivors, www.CaringVoices.ca, which enables survivors to connect from across the country in real-time and through forums. In addition to providing a platform for peer-to-peer support, Caring Voices, provides barrier free access to health care professionals and community organizations. As the lead on this project Dr. Urowitz has helped to grow the online community to include over 2000 users and over 40 professional and lay moderators. Dr. Urowitz is currently involved in research that uses self-management techniques to engage people in becoming active participants in their own health. Examples include providing patients with access to their electronic health record, and projects that encourage survivors to adopt healthy lifestyle choices through goal setting. Her interests are focused on understanding how

to activate people to be participants in their own health and wellness, and its impact on the provider-patient relationship. Dr. Urowitz holds a MA in Medical Ethics from the University of Virginia, a MSW from the University of Pennsylvania and a PhD in Health Policy and Bioethics from the University of Toronto. David Wiljer is the Director of Knowledge Management and eHealth Innovation for Oncology Education and the Radiation Medicine Program at Princess Margaret Hospital/ University Health Network and an Assistant Professor in the Department of Radiation Oncology in the Faculty of Medicine at the University of Toronto. He is also the Chair of the Canadian Committee for Patient Accessible Health Records (CCPAEHR), a national working group dedicated to involving patients in their EHR. With an expertise in knowledge exchange and impact assessment, he has led the research, development, implementation and assessment of complex informatics initiatives for cancer care. His work includes ‘Caring Voices’, an online social networking software, ‘Lymph-Line’, a research initiative funded by the Canadian Breast Cancer Research Alliance (CBCRA) to support Lymphedema patients, and ‘Getting Results’, a portal providing malignant hematology patients access to elements of their health record. The recipient of a Minister of Health innovation award, David recently received the Cancer Patient Education Network (CPEN) Gold Star Award for his contribution in the field of informatics for patient education. Alejandro (Alex) Jadad is a physician, patient advocate and researcher who examines innovative ways to help people, regardless of who they are or where they live, to use state-of-the-art information and communication technologies (ICTs), with enthusiasm, proficiency and confidence, to achieve the highest possible levels of health and wellbeing. His work blends evidencebased decision-making, eHealth innovations, and international trans-disciplinary collaboration. Alex is actively involved in several international

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academic–private sector partnerships to improve the quality of the research infrastructure to accelerate the transformation of the health system in the information age, and minimize inequality in health in societies across the world. In 2000, Alex joined the University of Toronto and the University Health Network, where he created the Centre for Global eHealth Innovation, and became the Rose Family Chair in Supportive Care and the Canada Research Chair in eHealth Innovation. He is developing virtual clinical tools to transform the encounter between patients and health professionals, interactive tools to promote knowledge translation and education of health professionals and the public, and a platform to support virtual collaborative communities, to respond to major public health crises and to enable the public (particularly young people) to shape the health system, and society at large.

ABSTRACT The internet has been used to support and inform the lay person about health and healthcare services almost since its inception. One of the most popular elements of this is the exchange of information using electronic communications such as message boards or mailing lists. The purpose of this paper is to provide a guide for practitioners engaged in asynchronous moderating or facilitating online health communities. The paper outlines why facilitation of online support groups is important, and strategies to support these communities by promoting and maintaining participation, while outlining key characteristics of an effective facilitator. It also highlights some of the challenges involved in facilitating online environments, with emphasis on gender-related issues and ‘groupthink’. Methods to evaluate these processes are also discussed. Electronic communication to support treatment decisions by patients is likely to continue to grow. As a result, so will the issues related to large groups working together. Ways to mediate and ensure equal and effective participation are an important option to support these endeavors.

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Keywords: facilitation, moderating, online, health, communities, guidelines, evaluation

INTRODUCTION ‘Fostering participation is one of the most difficult, yet crucial, roles for online facilitators’.1

Healthcare communities using electronic communication are active and thriving. Some of them have been in existence for many years.2 People use these communities to share and learn about a health issue or medical condition by posting, or reading questions or comments on web-based message boards, mailing lists, newsgroups, or social networking applications (known collectively as computer-mediated communication or CMC). Some online health forums run informally with no rules, regulations or anyone acting as a moderator or facilitator. Others involve regulation, requiring approved registration before participation or the filtering of messages before others can read them. Participation in online support groups depends on the nature of how the CMC is taking place. In some online forums, messages are posted in a threaded discussion in which the participants exchange information in an asynchronous (at different times) format. In other cases, the information is exchanged in a synchronous (at the same time) way. This latter format can also be referred to as a chat room or a live discussion. The focus of this paper is asynchronous CMC. Physicians and other healthcare providers are participating in these communities in a professional capacity. Some are exclusively designed to support professional-to-professional interaction, such as Sermo (www.sermo.com); some provide patients with access to professional

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clinical services such as WebMD, NetDoctor or Health Communities (www.webmd.com, www.netdoctor.co. uk, and www.healthcommunities.com); and in others, professionals collaborate online with patients, either in the format of guest experts or as regular facilitators. In other cases, perhaps the majority, lay people or those with an illness act as moderators (eg, Association of Cancer Online Resources (www.acor.org) or Beyond Indigo (www.beyondindigo .com). In other communities, such as Caring Voices (www.caringvoices.ca), a web-based information and support site for cancer survivors both professionals and cancer survivors (peer volunteers) can facilitate synchronous discussions and monitor asynchronous forums. Recently, there has been a shift in the philosophy and nature of web technologies and associated behaviors towards increasing participation and supporting collaboration.3,4. Some of the web-based tools used to support these goals (referred to as Web 2.0) include blogs, wikis and social network sites. Social networking websites such as Facebook or MySpace have provided the means for health information exchange and collaborative grassroots knowledge building through ad hoc groups created and supported by people who share an interest in learning about a health issue.5,6 Many professionally-moderated online health forums have shown promise in enabling patients to help manage chronic illnesses.7 With this understanding and the emergence of collaborative Web 2.0 tools, moderating online communities is becoming an issue that deserves attention. The purpose of this paper is to describe the emerging challenges associated with the facilitation of online communications, strategies to overcome them, and to propose some tips for effective facilitation and evaluation strategies.

SUPPORT GROUP FORMATS

In-person or face-to-face support groups have been in existence for many years and have become increasingly popular perhaps due to the success of major efforts such as Alcoholics Anonymous. Many 12-stepprograms have stemmed from this model, including Narcotics Anonymous and Overeaters Anonymous. Unlike therapy groups, which are most often facilitated by professional healthcare providers, support groups offer emotional support in a more informal way, sometimes without any leader or instructor.8 The facilitation of online support groups shares similar goals with their faceto-face counterparts, including the need to maintain order and ensure that all participants are able to share their viewpoint, questions and concerns.8 The relative effects of face-to-face versus internetmediated support groups, including the impact of moderators in relation to maintaining order, have yet to be explored in depth. A recent systematic review of research on support groups found that, ‘No study has compared the relative effectiveness of different peer-support models’.9 Preliminary research, on the other hand, suggests that groups that are professionally moderated may have better outcomes for the participants in terms of positive emotional expression and equal or better for cognitive adaptation (emotionally and intellectually dealing with one’s disease) than groups that are facilitated by peers.10 WHY IS FACILITATION IMPORTANT? Online facilitation requires different training from that provided for in-person support groups. A natural part of any group interaction includes debates and negotiation over the order and duration of participation, the activity or topic that should be discussed, and decisions about a course of

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action. These issues occur online just as they do during in-person communication. In some circumstances, particularly when there is no clear leadership, these behaviors can consume inordinate amounts of time and energy, even derailing efforts to collaborate. An additional issue for facilitators of online communities is the need to deal with communication challenges associated with the lack of non-verbal cues that can lead to misunderstandings, flaming or negative comments.11 For example, some online communities have been negatively affected by spam (unsolicited messages that contain advertisements) or other intrusive postings.4,12 Facilitation and monitoring of posted messages in a forum can help reduce these problems. Another important challenge for facilitators is to determine how they could influence factors that motivate people to join and remain active members of online forums, or those that make them leave. For example, some women with breast cancer may not participate or drop out of an online support group to avoid sharing details of the progression of their disease or simply because they could not find information relevant to their current circumstances. Others may feel that they cannot find a place in the community, either because they perceive their situation to be too different from the others or because they are not able to establish a legitimate position in the group.13 In other situations people may feel overwhelmed with the amount of information in online forums, experience situations in which questions go unanswered or get annoyed by message postings mainly filled with complaints. Other important barriers to participation include concerns about the credibility of the content found online.14 Two other important factors related to the facilitation of online communities relate to gender differences and what is

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known as ‘groupthink’. In terms of gender, it is important to recognize that although both men and women participate in online support groups, men tend to view them as means to meet their informational needs, whereas women are not just inclined to seek information, but are very interested in finding emotional support.15 Sullivan describes these different types of online communication in online health forums as ‘report’ versus ‘rapport’ talk, respectively.16 Sullivan’s study of ovarian and prostate cancer mailing lists revealed that men supported each other by sharing treatment information while women supported each other by sharing personal experiences and feelings.16 Facilitators need to be aware of these differences, particularly in forums where both genders participate. A facilitator (as well as other participants) may need to learn how to ‘read between the lines’, or to understand when a participant is seeking emotional support as well as factual information. Supporting these dual goals is an important part of both the facilitation and participation process. Facilitators of online communities must also be aware of ‘groupthink’. This is a phenomenon in which individual members of the group give up their individual viewpoints, unique perspectives and independent thinking to achieve group cohesion.17 When a group has been participating together for a long period of time, they may begin to reinforce each others’ ideas and marginalize or discredit those who suggest alternative viewpoints. It is this insulated participation format that may cause new members not to participate, leading to ‘close-mindedness’ (new ideas are suppressed). As a result, minority perspectives (viewpoints held by few members) may be discredited, ignored or shut down. Participants may also feel that they cannot share their opinion (‘self-censorship’) if it is in conflict with established

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group norms.17 There may be increased potential for this type of behavior when conversations include treatments or therapies not accepted by the dominant discourse promoted by the forum. For example, in a forum that privileges Western medicine, sharing personal experiences on using alternative and complementary medicine could fall victim to groupthink. If participants engage in ‘direct pressure on dissenters’, some may fear sharing their thoughts and engage in self-censorship. If some participants exert ‘direct pressure on dissenters’ or openly criticize their opinions (acting as ‘selfappointed mindguards’), others may feel intimidated and fear sharing their thoughts, again engaging in self-censorship.17 Facilitators need to be aware that groupthink can lead to flawed decisionmaking, and make every possible effort to prevent it or control it as early as possible. FACILITATION PROCESSES Promoting participation Facilitators should attempt to read all the posted messages in the forums and answer questions when necessary (that is, when members of the community have not responded or the question is directed to the facilitator). They should also encourage other participants to respond and if necessary remove any material, including spam and off-topic postings considered inappropriate.18 In some cases, the software application used in the forum can enable the facilitator to control who can contribute messages (such as filtering and reviewing messages before posting them). However, this method of facilitation can be time consuming, may be considered heavy-handed or even a form of censorship and is not recommended for more informal communities. It has been estimated that for every one

person who posts a message, there are 100 who read it but do not contribute further to the discussion.19 Some of the reasons for this behavior include not understanding how the community operates (social norms), concerns over whether questions will solicit a response, or feeling as though one has nothing to contribute.19 To reduce these types of barriers and promote participation, the facilitator must build an environment in which participants feel comfortable and safe.20 The more messages that are posted, the more likely that people will participate and stay involved with the community. In addition, when their message is addressed, the ‘poster’ will feel a stronger sense of belonging. The facilitator can further promote participation by welcoming new participants, acknowledging the efforts of those who post their personal experiences and asking questions to encourage communication and collaboration. Promoting participation is a particularly important activity when the online community is just forming, or when new members join the community. Maintaining participation Maintaining participation requires another set of skills from those used for promoting it. These skills should be applied over time as the online community matures. To understand how to maintain participation in a forum, it is useful to examine key components of message postings. One way to categorize these components is to consider messages as one of three categories: pragmatic, social, or argumentative.20 Those that are pragmatic in nature tend to more directly address the forum goals (e.g., a message that asks for information on the side-effects of a certain treatment) whereas the social posts (those containing information that is about personal activities that are not directly health-related) are less likely to focus on the topic but may still be of value. For example, someone

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may share stories about participating in sports while recovering from surgery that others might find useful. Argumentative message postings contain some element of debate. Each of these types of message postings has a place in an online forum. Facilitating requires an understanding of how to promote a balance of postings within these three categories. This process is referred to as maintaining pragmatic dialogue.20 Learning to redirect messages that are off-topic may be required. It is often enough for the facilitator to let the thread continue for two or three message postings before re-directing the conversation. This allows time for it to cease of its own accord. Participants will appreciate that there is room to share on other topics but understand that there is a limit. An online health forum is more likely to thrive if there is a climate promoting a shared goal among members, rather than competition between each other. In some cases, participants may try to be ‘one up’ each other, with escalating descriptions of difficulties they are experiencing with their own health conditions. A facilitator can promote a sense of community and enable participants to meet their goals by helping them to respond to others, sharing advice, and ideas.20 The facilitator can do this directly by asking others to engage in such behavior or provide examples from their own experiences where relevant. It is important to remember that online forums in which the subject matter is health, in particular one’s own experience with an illness, there will be expressions of emotion and feeling. This will happen naturally as participants tell their stories through narration. When participants take the time to share a painful or difficult personal experience, the facilitator should acknowledge, validate and appreciate their message with compassionate statements.21 In this fictitious example, a woman with

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MS posts the following message in a forum: ‘I have just returned from an appointment with my doctor. Turns out I won’t be able to get into that new clinical trial as I had hoped. It seems as though they are not enrolling any new patients. To make matters worse I’ve waited three months just to find out something I could have been told a long time ago on the telephone. I’m having difficulty tolerating the drug that I am on and I don’t know what other medication I can take at this point’ The facilitator could respond by writing the following statements: ‘This is a very difficult situation (acknowledgement). Thank you for sharing it with us (appreciation). It must be both annoying and frightening to be in this predicament (validation)’ This is known as ‘accepting the expression of feelings’ and is one technique considered important in sustaining participation.22 Facilitating an online forum can be time consuming. Whenever possible, there should be an alternative for situations in which the facilitator is unable to moderate. Where there are multiple facilitators for one forum, it is recommended that they discuss their moderating style to ensure consistency. Over time, some community participants may emerge as ‘natural’ facilitators. This should be encouraged and supported. Contributions and involvement of this nature will likely improve the sense of community if participants feel they can contribute to its governance. It may also increase the capacity for the community to operate in a more self-sufficient way. Over time, the lay facilitator (someone who is not a healthcare

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Table 1: Improving participation Objective

Task

Promoting participation

Welcome new participants Thank participants for sharing personal stories Ask questions to help enable collaboration Welcome new participants Thank participants for sharing personal stories Ask questions to help enable collaboration

Maintaining participation

Redirect or create a new thread for off-topic messages Promote collaboration by encouraging participants to share Acknowledge that all viewpoints are valid Support goals of the participants by acknowledging their requests Acknowledge, validate and appreciate message postings Provide members with opportunities to act as facilitators

professional or does not have personal experience with the health condition that is the focus of the forum) role may become obsolete. Peer mentoring and peer facilitation may have a greater effect due to the capacity to promote the sharing of anecdotal and experiential information related to the specific health condition of the group. The facilitator should attempt to keep the participants motivated. Expressing enthusiasm is one way to help achieve this. Online forums, especially those that focus on a health issue, may be at risk of deterioration as participants also deal with emotions and frustrations associated with being ill. Members must also feel that their perspective, whether that be culturally bound or related to a belief system, be respected. Finding ways to support various opinions and ideas is important to the health of the community. For example, participants should know they could discuss the use of an alternative therapy as a treatment option without criticism. The facilitator should be able to acknowledge that differing views are welcomed and supported. It should be conveyed that criticisms of other opinions and the not the person

who posted them are acceptable when done appropriately without personal attacks.20 Table 1 outlines tips for participation. EVALUATION As online environments are relatively new, so is the field of evaluating participation in these contexts, more specifically the notion of assessing the role of facilitators or moderators in this capacity. One advantage to this medium is the way in which the presented information and exchanges are stored. Unlike gestures or the spoken word (unless recorded), posted text can be evaluated using various metrics due to its archival nature. However, this can also be a disadvantage as we communicate in person in many other ways, including body language and intonation, which are missing or muted in online forums.

PROCESS AND OUTCOME EVALUATIONS The first step in an evaluation is to determine whether a process evaluation (one that measures implementation and execu-

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tion of the program or service) or an outcome evaluation (focuses on whether the program achieved its overall goals or objectives) is more appropriate. For process evaluations of online facilitation, the focus should include determining if the levels and nature of the participation were adequate and whether the facilitator was acknowledging, validating and appreciating messages and postings. These objectives can be met by examining the frequency, regularity and content of the messages. One way to measure collaborative participation is to examine the threaded conversations (posted messages and associated responses).20 Single posts containing questions that do not generate answers may indicate a lack of appropriate facilitation. If participants are asking questions for which there is no response, then the facilitator may need to encourage others to help by posting a message to this effect. A series of messages threaded together may not necessarily be a sign of successful collaboration. It may indicate an argument. In particular, if the participants begin to also engage in promoting pragmatic dialogue, then the facilitator has likely been effective in conveying this task. Over time the number of social and argumentative posts should be reduced and the number of pragmatic posts increased. In addition, an evaluation should look for examples in which the facilitator has helped sustain participation by acknowledging the expression of feelings. If the overall objective of the program is to provide a mechanism for participants to share and learn about a healthcare condition, then the evaluation should focus on measuring these outcomes. By using qualitative methods such as interviews or focus groups, there is an opportunity to also determine unintended outcomes. The open-ended nature of these techniques allows for other findings to be shared. For example, participants of a focus group may

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share the ways in which they used the information they have found in an online forum with others in an in-person support group. Other ways to conduct an outcome evaluation include satisfaction surveys. Measures should focus on determining if participation was beneficial to the participants’ goals for engaging in the forum. Participants should also be involved in the evaluation of the facilitator(s). If the outcome evaluation is to measure the intended effect of the facilitator, then similar measures as to what was presented for the process evaluation can be employed. Contacting participants who have ceased to participate in the group may also provide important insights regarding their departure. Metrics for conducting process and outcome evaluations are provided in Table 2. CONCLUSION Support groups for health conditions are available in abundance on the internet. However, the process of large group online collaboration is a relatively new phenomenon. Unlike their in-person counterparts, which have evolved over the years by applying knowledge of group dynamics from other fields, there is less of a history and understanding of how we work together online. Further, as evident with technological changes such as Web 2.0 supporting online collaboration is becoming a distinct new role with its own set of skills for facilitators. Therefore, finding ways to understand, support and evaluate this process in health education are important priorities. The question of who is better suited to act in the role of the facilitator, an external authority figure versus a member of the community, remains to be determined. This will likely depend on the nature and purpose of the community. Some online support groups may work better with a lay

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Table 2: Process and outcome measures for assessing facilitation Type of evaluation Process Evidence of participation: nature and extent of message postings

Evidence of effective facilitation through collaboration: nature and extent of participants working together

Measurement method Quantitative measure Count the messages in the forum and calculate mean by day, week or month to establish whether this is increasing or decreasing. Conduct a content analysis of the posted messages to investigate the potential causes of any changes. Qualitative measures Interviews or focus groups with community members to help explain the results of the quantitative measures. Quantitative measures Count the number of single posts that lead to threaded discussions; analyze the content of message postings to find evidence of participants sharing and collaborating; examine for evidence of pragmatic dialogue by the facilitator(s) and participants; determine whether expressions of feelings have been supported by the facilitator and other members of the community. Qualitative measures Interviews or focus groups with community members to assist in the interpretation of quantitative results.

Outcome Qualitative Evaluate the satisfaction of participants with the online forum and the effectiveness of the facilitator(s) by conducting focus groups or interviews with forum participants. Quantitative Conduct surveys of participants to measure their satisfaction with experience. Using either qualitative or quantitative methods follow-up with non-participators who have left the group in order to determine the reason(s) why.

person as a facilitator whereas others may need a health professional. Others may find that utilizing both is the most effective technique. The concepts presented in this paper should be considered relevant to any facilitator of an online health forum, regardless of their status. With medical advances the ways in which patient care is provided have evolved. Over the years, diagnostic testing and treatments have advanced greatly. We now have a more advanced understanding of what causes illnesses and in some situations how to prevent and treat them. With more effective treatments, however, unprecedented numbers of people are facing multiple diseases or very complex

health conditions, which defy traditional medical approaches. This is making the conversations about health concerns become increasingly difficult. Finding ways to deal with this effectively may make the role of healthcare professionals providing information through the internet using CMC particularly relevant. At the same time, given that people living with complex diseases develop their own kind of expertise, it is reasonable to expect that an increasing number of patients and health professionals will find themselves collaborating to improve care using this medium. However, with this increased collaboration occurring online, there may be an increase in groupthink and other

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associated issues. New forms of groupthink, proprietary to online environments, may also emerge. By presenting these concepts, we hope that others will read and employ our concepts as well as publish their results so that we can refine the process. This will increase our understanding of how we collaborate in online message forums and ultimately improve the healthcare experience, for all.

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ACKNOWLEDGMENTS This work was supported by funding from the Canadian Institutes of Health Research (CIHR) and the Healthcare, Technology, and Place Research Training Program (HCTP), Dr L. O’Grady was supported by a CIHR PostDoctoral Fellowship sponsored by the Ontario Women’s Health Council (OWHC) and the Institute of Gender and Health (IHC). J.L. Bender was supported by CIHR doctoral fellowships in HCTP and Cell Signaling in Mucosal Inflammation and Pain. Dr. A. Jadad is supported by the Canada Research Chair in eHealth Innovation and the Rose Family Chair in Supportive Care.

REFERENCES Herie, M. (2004) ‘Online teaching and learning’, eCOMMUNITY: Int J Mental Health Addict, Vol. 2, No. 1, pp. 22–28. (2) Sharf, B. F. (1997) ‘Communicating breast cancer on-line: support and empowerment on the Internet’, Women Health, Vol. 26, No. 1, pp. 65–84. (3) Deshpande, A. and Jadad, A. (2006) ‘Web 2.0: Could it help move the healthcare system in the 21st century?’, J Men’s Health & Gender, Vol. 3, No. 4, pp. 332–336. (4) O’Grady, L. (2008) ‘Web 2.0: Collaboration in Web-Based Patient Health Education. Health Education Research Trends’, Nova Science Publishers Inc., Hauppauge, New York. (5) Bender, J. L., Hohenadel, J., Wong, J., Katz, J., Ferris, L. E., Shobbrook, C., et al. (2008) ‘What patients with cancer

(1)

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(8)

(9)

(10)

(11)

(12)

(13)

(14)

(15)

want to know about pain: a qualitative study’, J Pain Symptom Manage, Vol. 35, No. 2, pp. 177–187. Bender, J. L., O’Grady, L. and Jadad, A. R. (2008) ‘Supporting cancer patients through the continuum of care: a view from the age of social networks and computer-mediated communication’, Curr Oncol, Vol. 15, Suppl 2, pp. S42–S47. Zrebiec, J. F. (2005) ‘Internet communities: do they improve coping with diabetes?’, Diabetes Educ, Vol. 31, No. 6, pp. 825–828, 830–832, 834, 836. Barak, A., Boniel-Nissim, M. and Suler, J. (2008) ‘Fostering empowerment in online support groups’, Comput Human Behav, Vol. 24, pp. 1867–1883. Hoey, L. M., Ieropoli, S. C., White, V. M. and Jefford, M. (2008) ‘Systematic review of peer-support programs for people with cancer’, Patient Educ Couns, Vol. 70, No. 3, pp. 315–337. Lieberman, M. A. (2008) ‘Effects of disease and leader type of moderators in online support groups’, Comput Human Behav, Vol. 24, pp. 2446–2455. Wright, K. (2000) ‘Perceptions of online support providers: An examination of perceived homophily’, Comm Q, Vol. 48, No. 1, pp. 44–59. Uden-Kraan C. F., Drossaert, C. H., Taal, E., Lebrun, C. E., Drossaers-Bakker, K. W., Smit, W. M., et al. (2008) ‘Coping with somatic illnesses in online support groups: Do the feared disadvantages actually occur?’, J Comput Hum Behav, Vol. 24, No. 2, pp. 309–324. Sandaunet, A. G. (2008) ‘The challenge of fitting in: non-participation and withdrawal from an online self-help group for breast cancer patients’, Sociol Health Illn, Vol. 30, No. 1, pp. 131–144. O’Grady, L. (2008) ‘Meeting health information needs of people with HIV/AIDS: sources and means of collaboration’, Health Info Libr J, Vol. 25, No. 4, pp. 261–269. Klemm, P., Hurst, M., Dearholt, S. L. and Trone, S. R. (1999) ‘Cyber Solace: Gender differences on Internet cancer

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(16)

(17)

(18)

(19)

support groups’, Comput Nurs, Vol. 17, No. 2, pp. 65–72. Sullivan, C. F. (2003) ‘Gendered cybersupport: a thematic analysis of two online cancer support groups’, J Health Psychol, Vol. 8, No. 1, pp. 83–103. Janis, I. L. (1982) ‘Groupthink: Psychological Studies of Policy Decisions and Fiascoes’, 2nd edn. Houghton Mifflin, Boston. Youngblood, P., Trede, F. and di Corpo S (2001). ‘Facilitating online learning: A descriptive study’, Dist Educ, Vol. 22, pp. 264–284. Preece, J. (2000) ‘Online Communities:

Designing Usability, Supporting Sociability’, John Wiley, New York. (20) Collison, G. (2000) ‘Facilitating Online Learning: Effective Strategies for Moderators’, Atwood, Madison, WI. (21) Knowles, M. S., Holton, E. F. and Swanson, R. A. (2005) ‘The Adult Learner: the Definitive Classic in Adult Education and Human Resource Development’, 6th edn. Elsevier, Boston. (22) Wlodkowski, R. J. (1999) ‘Enhancing Adult Motivation to Learn: a Comprehensive Guide for Teaching all Adults’, revised edn. Jossey-Bass, San Francisco, CA.

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