Cancer Outreach And Support In Second Life


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Slides from a presentation during the Panel on Health Outreach and Support at the Second Life Community Convention (SLCC), San Francisco, August 2009

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  • Slide 1 (intro) Thankyou Brian, and welcome fellow-secondlifers. It’s a great honor to be taking part in this panel. I’m going to give an introductory overview of outreach and support in second life, specifically for cancer. It’s estimated that one in three of us will have cancer during our lifetime, which means many of us in this room will already have been touched by cancer – if not personally, then in our family, friends, or work circles. So it’s not surprising that there are so many of us who are looking for information or support wherever we can find it.
  • Slide 2 (definitions) Let’s start with some quick definitions. Outreach is often defined to mean ‘the extending of services or assistance, usually community services, beyond current or usual limits’. It may involve raising awareness of a brand, holding events or talks or exhibits to educate the community for example on early signs of a particular type of cancer, the importance of regular screening, or how to reduce the risk of cancer through for example smoking cessation or healthy eating. Support is often defined to mean giving moral or psychological support, aid, or courage to someone. In the context of cancer support, this might be in the form of group peer support meetings with fellow survivors, or one-to-one support. Of course they are not mutually exclusive, but in the view I’m taking here, outreach is more concerned with education and prevention, while support is more concerned with those who have been diagnosed, or their families.
  • Slide 3 Cancer Places & Groups As preparation for this panel I searched on the keyword ‘cancer’ in Second Life and SLHealthy (which is a web resource managed by Perplexity Peccable of Second Life, who is a real life librarian) and distilled this down to ten regions or hangouts and 57 groups that provide some form of cancer education or support. I excluded those whose primary purpose is fundraising, such as the many relay for life groups, but I HAVE listed those that have a combined fundraising and educational purpose.
  • Slide 4 Cancer Places These are the ten cancer outreach sites I identified that provide education or support to cancer survivors, their caregivers, or to the general public. Eight of these have a real life affiliation and two are private builds. I will walk through these individually in a moment.
  • Slide 5 Cancer groups Of the approximately 177 groups that came up in the keyword search, I found 57 groups that are providing some form of cancer education and/or support. Of these, approx. 35 groups have an official or unofficial tie-in to a real life cancer organization. As you can see, only 7 groups have more than 100 members, and there is a ‘long tail’ of groups with fewer than 50 members and may not all still be active.
  • Slide 6 Cancer groups with >50 members This is a list of the groups with more than 50 members. Three of these groups are linked with the American Cancer Society. I’ve included here the Relay for Life volunteers group, because, while its primary goal is to raise money, it is an important force in mobilizing residents who have been touched by cancer either personally or in their family or friends to work for a common cause, it raises awareness for the American Cancer Society in Second Life and helps bring people in who are looking for information or support.
  • Slide 7 Cancer organizations that are gone or inactive There are also a number of organizations who have gone from Second Life. And it’s perhaps interesting to pause for a moment and reflect why The Lance Armstrong Foundation entered SL in 2008 with the purchase of four sims and held cycling and surfing events as well as having the intention to provide education and support. It left SL just as suddenly in September 2008 when its volunteer representative in SL had to leave for health reasons, and LAF was not willing or was unable to continue the project. The French organization ‘La Ligue Contre le Cancer’ also left some time after March 2008. Macmillan Cancer support came in to support a specific campaign but unfortunately has not followed this up with any new activities. The hangout still exists, and there is a Macmillan group, but the posters lead to a defunt URL and the owner hasn’t been in world for over a year. There have been no notices posted for the Leukemia & Lymphoma and Prostate Cancer groups for least a year. It’s noteworthy that most of these had a single ‘owner’ and therefore no sustainable basis for continuing if something happens
  • Slide 8 American Cancer Society Moving on, I’m going to walk you through the main regions and hang-outs that are providing cancer education or support in different ways. The first of these, the American Cancer Society, has been in Second Life since 2005 when Jade Lily brought Relay for Life into SL. Since then Relay for Life has gone from strength to strength. In 2009 there were over 125 teams with 2 to over 400 members each who raised funds between March and July, culminating in an overnight event when we walked a track covering 37 sims with some phenomenal builds. In total, RFL raised nearly $275 thousand US dollars this year! In 2007 the ACS decided to set up the ACS island, consisting of a welcome center, a media library, an auditorium for talks, Relay offices, a tribute to cancer survivors, and a memorial to survivor ‘heroes’ who have passed. It is also home to two peer support groups: the cancer survivors and cancer caregivers group each meet regularlyini ‘Hope Haven’. The cancer survivors group, which I lead, has grown from around 60 members in mid 2007 to over 280 members presently. It meets twice a week and also has regular survivor-led ‘fighting spirit’ talks. Our other activities include fashion ‘makeovers’ for survivors, and a journalling workshop that we hope to repeat soon.
  • Slide 9 AICR Next, the Association for International Cancer Research is a cancer charity based in the UK that funds research into cancer worldwide. AICR entered Second Life in 2007 with a small ‘shop’ on the Scotland sim and later purchased its own sim. It has a club where people go to hang out and dance, and it also has information on these sign boards telling people about the 12 most common cancers. I understand AICR is planning to bring in real world experts for Q&A sessions where avatars can put their questions.
  • Slide 10 London Oncology Clinic Moving on, the London Oncology Clinic is a representative build of a real life private clinic in Harley Street, London. It is amazingly realistic as I can testify, because my own cancer was diagnosed in just such a building in Harley Street, and it brought back powerful memories. Inside there’s a waiting room, consulting rooms, and you can visit the lab, see how a scan is performed, and visit the treatment room where robot avatars are having chemotherapy. It was created by the clinic to show patients round and to give them an idea beforehand of what to expect.
  • Slide 11 Macmillan Cancer Support Macmillan Cancer support is a British cancer charity perhaps best known for training the ‘Macmillan nurses’ who are highly regarded specialist nurses working with cancer patients. It is an important resource for people who have just been diagnosed or for friends or family seeking information,. It has online support groups, and a series of excellent informational videos. I thought I would just show you this build, even though as I mentioned earlier Macmillan appears to have gone from Second Life.
  • Slide 12 Virtual Cancer Institute Moving on again, this is the Virtual Cancer Institute which hosted a two day mixed reality breast cancer conference last September. The talks were streamed into SL and the two main organizers also attended this ‘meet the professor’ session as avatars where they answered questions from SL residents. I haven’t heard of any new activities planned, but the institute itself is still there, and so is the build of the oncology hospital in Modena.
  • Slide 13 Breast Cancer Awareness Breast Cancer Awareness was founded in Second Life by Marymac Dougall, a breast cancer survivor and a volunteer for the Y-Me breast cancer charity which has recently changed its name to Network of Strength. The group used to hold peer support meetings, but sadly MM and NOS parted company, and MM is no longer hosting meetings. The hangout is still here though, so perhaps Network of Strength has further plans.
  • Slide 14 Lustgarten Foundation This site, really a small ‘exhibit’, was built after the death of Brendan Flannery, the SL name of a 26-year-old young man who died from pancreatic cancer in May this year. His SL friends have arranged for the proceeds from his business, ‘Teen Speak’, to go to the Lustgarten Foundation, a non-profit organization that aims to raise awareness and funds for pancreatic cancer research and educate people about pancreatic cancer. There are educational posters at the site.
  • Slide 15 Breastcancer Awareness Garden This garden is a built by Akasha Dividasero, a member of the cancer caregivers group, who wanted to provide a place for breast cancer survivors and their loved ones to hang out and relax. I know it is very popular with breast cancer survivors in our survivors group. What’s important about this build I think is that it is an example of how we can find ‘support’ in a place, as well as in a group of people.
  • Slide 16 Cancerland Next, ‘Cancerland’ was built by thyroid cancer survivor, Hilde Hullabaloo, who built it to help herself to work through the emotional rollercoaster of her diagnosis and treatment. And yes that’s me, sitting in the radiation isolation room. Over 25 years ago I was diagnosed with a recurrence of thyroid cancer and part of the treatment was that I had to drink radioactive iodine and spend four days in isolation in just a room such as this. So when I first visited this build I could very directly relate to how Hilde felt. It is an amazing example of how building in SL can be in a sense (I use the word advisedly) ‘therapeutic’. And how it can be used to educate newly diagnosed patients or help inform their family and friends about the disease.
  • Slide 17 RISE UP/Nodeman And this is NODEMAN. The centerpiece of R.I.S.E. U.P. which was founded this year in SL and is sponsored by Roche Products Australia. Its stated purpose is to raise awareness about lymphoma and the most common signs and symptoms of lymphoma for World Lymphoma Awareness Day (WLAD), 15 September 2009. Its first event was last month, and already RISE UP’s ‘SWIRL@ group has ~420 members. Visitors can explore NODEMAN by balloon, or go on a quest for nodes, and there are information boards around the sim to explain early signs and symptoms of lymphoma. RISE UP is also planning to bring in experts to give talks.
  • Slide 18 ACS/ANATOMICA I hope I’ve given you a taste of the variety and richness of ieducation and support that is happening in SL. And some of the things that work and some that seem to work less well. And to conclude ... This is the future, and it’s already here. This is Anatomica, which was launched at the 2009 Relay for Life last month, by the team Friends Fighting Cancer, and which I was delighted to learn will be moving soon to the American Cancer Society island together with another build, the Breast Cancer Rollercoaster. (That’s Poppy in the capsule by the way, trying to shoot cancer cells.) I find this so exciting, because it is engaging, educational and supportive, and because it makes such good use of the immersive, 3D environment of Second Life. I’m sure we’ll be seeing more of this type of approach.
  • Cancer Outreach And Support In Second Life

    1. 1. Poppy Zabelin Second Life Community Convention San Francisco, August 15, 2009
    2. 2. <ul><li>Outreach </li></ul><ul><li>Support </li></ul><ul><li>‘ the extending of services or assistance beyond current or usual limits’ </li></ul><ul><li>WHAT: brand marketing, awareness, education, prevention, (early) detection, </li></ul><ul><li>HOW: Events, talks, notecard givers, newsletter, web links, quests, interactive builds </li></ul><ul><li>‘ give moral or psychological support, aid, or courage to’ </li></ul><ul><li>WHAT: Informational and emotional support </li></ul><ul><li>HOW: Peer support meetings, one-to-one </li></ul>
    3. 3. <ul><li>Searching on keyword ‘ cancer ’* </li></ul><ul><li>Search SL > Places = 46 </li></ul><ul><li>Search SL > All > Places = 180 </li></ul><ul><li>Search SL > Groups = 177 </li></ul><ul><li>Search SLHealthy = 43* </li></ul><ul><li>*includes sims, groups and events </li></ul><ul><li>After eliminating events, stores, libraries, individual RFL teams, kiosks, and memorials, arrived at: </li></ul><ul><li>Places = 10 </li></ul><ul><li>Groups = 57 </li></ul><ul><li>*Searches carried out August 1-3, 2009 </li></ul>
    4. 4. <ul><li>American Cancer Society </li></ul><ul><li>Association for International Cancer Research </li></ul><ul><li>London Oncology Clinic </li></ul><ul><li>Macmillan Cancer Support (UK) </li></ul><ul><li>Virtual Cancer Institute (Modena) </li></ul><ul><li>Breast Cancer Awareness/ Network of Strength </li></ul><ul><li>Lustgarten Foundation for Pancreatic Research </li></ul><ul><li>Breast Cancer Awareness Garden </li></ul><ul><li>Cancerland (thyroid cancer build) </li></ul><ul><li>R.I.S.E. U.P. National Lymphoma Day/ Roche </li></ul>
    5. 5. <ul><li>Total 57 groups of ~ 177 groups that mention ‘cancer’ are providing education and/or support </li></ul><ul><li>~ 35 groups have an official or unofficial tie-in to a RL organization (total 23 organizations) </li></ul><ul><li>7 groups > 100 members (2 groups >400) </li></ul><ul><li>4 groups > 50 members </li></ul><ul><li>12 groups > 20 members </li></ul><ul><li>34 groups with 2-19 members </li></ul>
    6. 6. <ul><li>SL’s RFL Volunteer – ACS* (431) </li></ul><ul><li>SwirL – RISE UP – World Lymphoma Awareness Day September 15 (420) </li></ul><ul><li>SL’s Cancer Survivors Group – ACS* (283) </li></ul><ul><li>AICR – Association for International Cancer Research* (208) </li></ul><ul><li>Susan G. Komen (205) </li></ul><ul><li>Breast Cancer Awareness, formerly NoS* (158) </li></ul><ul><li>SL’s Cancer Caregivers – ACS* (147) </li></ul><ul><li>Associacao Accreditar – IPSS (69) </li></ul><ul><li>SL Cancer Research UK (60) </li></ul><ul><li>Cancer Co-op (57) </li></ul><ul><li>Macmillan Cancer Support* (56) </li></ul>
    7. 7. <ul><li>Gone from Second Life </li></ul><ul><li>Lance Armstrong Foundation – Livestrong Army* </li></ul><ul><li>Closed suddenly in September 2008 </li></ul><ul><li>La Ligue Contre le Cancer – official site (French language) </li></ul><ul><li>still active in March 2008 according to SLHealthy </li></ul><ul><li>Still present but inactive </li></ul><ul><li>Leukemia & Lymphoma Society* </li></ul><ul><li>Malecare (Prostate Cancer Support, and Prostate Cancer Research Foundation groups)* </li></ul><ul><li>Macmillan Cancer Support UK* </li></ul><ul><li>Hangout still exists but group is inactive </li></ul><ul><li>* All with single owners not in world for >12 months </li></ul>
    8. 8. <ul><li>Entered SL with Relay for Life in 2005, founded ACS island 2007. Welcome center, media library, auditorium, Relay offices, tribute to cancer survivors, and a memorial to survivor ‘heroes’ . Two active peer support groups for survivors and caregivers, more groups planned. </li></ul>
    9. 9. <ul><li>Entered SL in 2006-7 (Scotland sim) built own island 2007. Community building (club, music events), informational posters ‘12 most common cancers’, plans for expert talks/Q&A’s. </li></ul>
    10. 10. <ul><li>Replica of London Oncology Clinic in Harley Street, London, UK. Patient education, orientation. </li></ul>
    11. 11. <ul><li>British cancer charity, a leading provider of information and support including excellent videos. Present but no longer active in SL? </li></ul>
    12. 12. <ul><li>Two-day mixed reality conference on breast cancer in September 2008 with talks streamed in from an international conference at the University of Modena, Italy. </li></ul>
    13. 13. <ul><li>Used to hold weekly peer support meetings, not currently active but still has an office in SL. </li></ul>
    14. 14. <ul><li>Set up to commemorate Brendon Flannery who died aged 26 of pancreatic cancer last May. Besides fundraising it also has informational posters about pancreatic cancer. </li></ul>
    15. 15. <ul><li>Built by Akasha Dividasero as a restful place for breast cancer survivors and their friends to hang out and relax. </li></ul>
    16. 16. <ul><li>Built by thyroid cancer survivor Hilde Hullabaloo to help herself work through the emotional rollercoaster of thyroid cancer treatment and to educate people about thyroid cancer </li></ul>
    17. 17. <ul><li>Founded 2009, sponsored by Roche Products Australia. Purpose to raise awareness about lymphoma and the most common signs and symptoms of lymphoma for World Lymphoma Awareness Day (WLAD), 15 September 2009. </li></ul>
    18. 18. <ul><li>The ‘Anatomica’ build, which will be moving soon to the American Cancer Society island. </li></ul>