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R.I.S.E. U.P. – lymphoma information in Second Life

nodeman Roche Integrated Support Entourage Unique & Personal Our Mission, or R.I.S.E. U.P, is an area in Second Life recently launched to provide education on lymphoma. It’s a joint effort between pharmaceutical company Roche Products Australia, Lymphoma Australia and the Leukaemia Foundation.

The purpose of R.I.S.E. U.P is singular: to provide an interactive, engaging way for people to find out more about lymphoma. For the veteran Second Life resident, there’s nothing particularly ground-breaking about the approach, but that’s not really the point. Given the importance of the health topic, it needs to be communicated clearly and somewhat simply – it’s about retention not entertainment. R.I.S.E. U.P. achieves that – there’s links to traditional web content, streaming media and a ‘Node Man’, which provides an effective way of showing the myriad of lymph nodes around the human body.

Collaborative partnerships

A noteworthy aspect of the project is its backing by the medical profession, private enterprise, key peak bodies and a range of people who have lymphoma. I took the opportunity to shoot some questions to Professor Jeff Szer, Clinical Haematologist at the Royal Melbourne and Western Hospitals to get his take on the project:

TMJ: What for you would demonstrate that the presence in Second Life has been successful?

Professor Szer: Pairs of eyes – how many people attend the general public presentations on lymphoma, as well as the number of YouTube replays. How many questions received during the presentations – there were a few during the first presentation this week.

TMJ: Do you believe there is growing acceptance of the use of virtual environments as a health education tool within the Australian medical profession, or is it still a case of pockets of innovators fighting against significant scepticism?

Professor Szer: My view is that there is growing uptake of this form of communication. The patients and families are better at this than the profession so we need to engage it proactively.

TMJ: As virtual environments continue to evolve, are there further education or actual interventions you’d like to be able to offer in regards to lymphoma or related disease states?

Professor Szer: I can see many educational opportunities for this type of live interaction. Another patient group that values education is the multiple myeloma population and there may be some interest from the patient groups (such as Myeloma Australia in Australia) in pursuing such an event. Currently, many of these activities are conducted through webinars or the like and this adds another possible dimension of interaction. My only concern is the behind-the-scenes work involved in setup which I suspect was far greater that I was exposed to.

I also had the chance to ask some questions of a lymphoma sufferer, 60-year old Anna Blyth, who I’d like to particularly thank for taking the time to respond (see Anna’s experience with lymphoma at the end of this post):

TMJ: Are virtual worlds like Second Life something you see as being useful for receiving health information i.e. does it provide something that other routes of communication like traditional websites can’t?

Anna Blyth: My experience with virtual worlds is very new and I’ve found that in comparing the communication of information with traditional websites, they are very different. When I looked for information on non-Hodgkin’s lymphoma (NHL) on traditional websites I was pretty overwhelmed. There was a lot of medical language that I didn’t understand very well. There was also a lot of research data that I couldn’t quite follow. And because there are so many types of lymphoma, I found it difficult to find information on the specific one that I have. I also found many sites conflicting with other ones in regards to long term outcome and the benefits of different forms of treatment.

Going to Second Life and visiting R.I.S.E. U.P., I was very impressed. The graphics are great and I felt that I was actually in a place that ‘real’ – as is intended of course. But the feeling is a good feeling and a calming feeling when looking for information regarding my health. I found it exciting visiting the different places and reading the information available on lymphoma. The information is direct and easy to understand and going into the Node Man was great also because I could see exactly where lymph nodes are and relate that to my body.

TMJ: How would initiatives like R.I.S.E. U.P. have helped you in your particular circumstance if it had been available?

Anna Blyth: When I was diagnosed in 2007, apart from websites to look up my cancer there wasn’t anywhere else to go. I got totally confused which really increased my overall state of anxiety. If I had been directed to the virtual world of R.I.S.E. U.P. I believe that I would have stayed away from the traditional sites and focused on the virtual world. With the simplicity of the tour, the information available and other events such as lectures etc., I think I would have understood my cancer much better. As I described in question one… the overall feeling of being in a real world would have helped me to not feel so alone and I would have had a much more positive experience as I learnt about lymphoma. Instead I was in a state of constant anxiety and fear as to what to believe from which traditional website.

Finally, I asked some questions of Libby Day, Roche Products’ Australian Director of Corporate affairs:

TMJ: Can you outline why Roche chose to get involved in virtual environments as a health education tool?

Libby Day: Roche Products has been committed to improving the health and well-being of people across the world for more than 50 years. Lymphoma is the most common blood cancer and the incidence has doubled over the past 20 years for no known reason, yet new statistics released by Lymphoma Australia reveal that one in five Australians do not know what lymphoma is, and less than 20% can name at least one common symptom. Furthermore, nine out of ten people don’t realise exactly how common lymphoma is within the population, even though more than 4,000 Aussies are diagnosed with the cancer each year.

Australians are increasingly going online to search for health information. After consulting with their doctor, the internet is the most popular source of health information. With the support of a number of health consumer organisations, Roche Products is aiming to meet this need by providing easily accessible lymphoma information to the general public through R.I.S.E. U.P. For many people, receiving a diagnosis of lymphoma is a particularly frightening and overwhelming experience because they have a low awareness of the disease. Furthermore, early detection can make a huge difference in the ability to combat this often life-threatening cancer, making the provision of accurate information critical.

There is a lot of misinformation about healthcare on the internet and Roche is committed to helping ensure that people are accessing correct and accurate resources.

TMJ: Does Roche have any involvement with Second Life outside of this project?

Libby Day: R.I.S.E. U.P. is the first Roche health awareness initiative to be launched within Second Life and is currently in its pilot phase – future plans for the initiative will be confirmed once it has been tested and evaluated. Roche is pioneering the provision of virtual health education amongst the pharmaceutical community and is, as yet, the first organisation to do so.

TMJ: Outside of this project, dose Roche see virtual environments as a means of maintaining competitive advantage in a competitive marketplace?

Libby Day: The virtual space is a growing area for all business sectors. With regards to education, as mentioned previously, we know that people searching for information regarding health are increasingly turning to the web. Projects such as R.I.S.E. U.P. will hopefully fill a void.

With regards to maintaining a competitive advantage, it is early days but even in this pilot phase, the virtual world technology is promising. At this early state, Roche Australia is only piloting the program and needs to address the technological barriers which have been detected during the test. This technology means Roche delegates can communicate in an engaging manner, at anytime and anywhere. From here, Roche Australia is working to strategise on how best to maximise the value of this technology.

TMJ: Does Roche have any plans in Second Life or other virtual worlds for the future?

Libby Day: The R.I.S.E. U.P. initiative is currently being piloted in Second Life and future plans for the initiative will be confirmed once it has been tested and evaluated.

Upcoming events at R.I.S.E. U.P

For those wanting to find out more or to enjoy some of the activities going on in coming weeks, here’s the details:

Until Saturday 24 October: Robin Roar, a R.I.S.E. U.P ambassador and Second Life expert, will be available to answer any questions you may have about R.I.S.E. U.P. and take you on a tour of the facilities. AEST: Tues‐Sun, 12:00‐17:00. Second Life time: Mon‐Sat, 05:00‐10:00.

Tuesday 27 October – Professor Jeffrey Szer, Clinical Haematologist at the Royal Melbourne and Western Hospitals in Australia, will hold a brief seminar on lymphoma signs and symptoms in the Auditorium. Professor Szer will be available to answer any questions R.I.S.E. U.P. visitors may have. AEST: 14:00. Second Life time: 21:00.

There’s also some music events going on – check out the details on R.I.S.E. U.P itself.

The Sum Up

As a health professional myself, I’ve long had a passion for using a range of methods to get crucial health information disseminated within the community. VIrtual environments are no exception to this, and given their growth, initiatives like this are key early steps. Skeptics may point to a lack of clarity around outcomes versus the cost of implementation. That tends to miss the point to a large extent. As Professor Szer stated: it’s consumers who are driving the momentum in the use of social media for health information. If companies like Roche Products are going to engage in brand recognition exercises in Second Life, I can’t think of a better way for them to do so.

Finally, the machinima created for the project gives a nice summary of R.I.S.E. U.P’s intent:

Check it out in-world

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Anna’s story:

• Anna noticed a large lump above her collar bone in late September 2007 and was initially advised to have it removed for cosmetic reasons
• However, five weeks later, Anna was diagnosed with Hodgkin’s Lymphoma
• Anna was not prepared for this, as she was initially told she wasn’t at risk of a cancer diagnosis
• She found it particularly difficult to tell her husband and four children about her diagnosis, as her family is very close
• Later that week, Anna underwent blood tests, a CT scan and a surgical biopsy. She was soon admitted to Cabrini Brighton Hospital and found herself in intensive care following an anaphylactic reaction to one of the anaesthetic agents. She was unconscious for over an hour until the medical team were able to revive her
• Following surgery, Anna was official diagnosed with Follicular Lymphoma and her diagnosis was a shock. She felt physically and emotionally exhausted and found herself in a surreal state
• Anna’s treatment consisted of twelve weeks of chemotherapy and a targeted biologic therapy. Throughout the treatment, she felt 100% supported by her family and a group of great oncologists
• On the ninth week of treatment, Anna’s oncologist informed her that the treatment was successful and she was cancer free
• Anna has now officially been in remission since April 2008 and she is a proud wife, mum and grandmother

Popularity: 1% [?]

Lions CLub and Second Life

lionsclub The Lions Club has 1.3 million members across more than 45 thousand clubs worldwide. A secular organisation, its mission is to “empower volunteers to serve their communities, meet humanitarian needs, encourage peace and promote international understanding through Lions clubs”.

The latest club being proposed will be located in Second Life, with official endorsement by the Lions organisation. Two information meetings are being held on the 5th August at 9am and 6pm Second Life time (2am and 11am on the 6th August AEST), at the current Lions Club presence in-world. If you’re after more information, contact Simba Jaggernov or Piratelionecu Humphreys in-world.

I don’t think I’m alone in my admiration for the work Lions do in local communities and it’ll be fascinating to see what this club will be able to do.

Popularity: 1% [?]

A Second Life success story: NCI

It has been in Second Life for four years (having just celebrated its fourth anniversary), has over 150 staff, costs about US$13,000 each year to operate, holds 46,592 square metres of Second Life land (and rents quite a bit more), and is among the virtual environment’s most well-trafficked organizations.

It isn’t one of those corporate sites you read about, though. It’s a non-profit group, with little existence outside of Second Life. It’s NCI, a volunteer organisation that ranks among the most successful groups in Linden Lab’s virtual world.

nci-class-event-schedule

NCI’s basic mission is to assist and support newcomers to Second Life. Originally founded by Brace Coral in April 2005, Coral named the organisation New Citizens Incorporated (though the ‘incorporated’ part was merely in jest), and founded it on the principle that everyone in Second Life was able to contribute to the orientation and support of new users. Even those with only a few days of experience would have answers and information that newer users lacked.

Originally a self-help facility with social events and a building sandbox, the scope of NCI was already expanding by the time Carl Metropolitan took over as executive director in a popular vote in September 2005, when Brace Coral scaled back her Second Life activities.

With Metropolitan at the helm of the organization, NCI expanded significantly both in land and personnel, offering large numbers of classes and events, funded by advertising and donations, and standalone ‘aid stations’ called Infonodes scattered all over Second Life near areas where new users are likely to be found. NCI’s financial picture isn’t always a rosy one, however.

Advertising and donations don’t quite meet the operational bills each year, usually falling about US$1,500 short, which necessitates periodic fundraising activities to make up the shortfall, often in the form of charity auctions. NCI’s charity fundraisers are supported by quite a number of Second Life creators, as well as some corporations, such as Microsoft who donated software to the last big fundraising auction.

In an environment where users only have a limited number of group memberships available, NCI’s free-to-join group sports nearly 9000 members at present, and provides round-the-clock live-help for new users with questions and queries.

The NCI’s watch-words are civility, respect and courtesy, but maintaining a safe space for new users, protected from those who would exploit them or intentionally disrupt or harass them isn’t easy. NCI maintains strict rules of conduct, and enforces them swiftly when staff feel that new users may become upset or disturbed by the actions of a disruptive or abusive visitor. Indeed, one of the main pillars of NCI’s popularity is swift and strong enforcement of local conduct rules.

Keeping an organization like NCI running isn’t an easy job either. While class instructors and event hosts recieve payments from the organisation for their duties, nobody is getting a wage from the process. Senior staff can be under tremendous amounts of pressure. In the wake of NCI’s 4th anniversary celebration on 18 April, executive director, Carl Metropolitan decided that he needed a sabbatical, partly from the daily pressure of work, and partly due to unavoidable circumstances related to the USA’s economic downturn.

Presently, a new interim management team are settling in, with Afon Shepherd and Gramma Fiddlesticks cooperatively managing the organisation until Metropolitan’s return to duty. That NCI works at all is something of a surprise, being an expensive operation, with so many people from all walks of life, from most of the countries in the world, bonded primarily only by the willingness to help others and to donate their spare time.

NCI does work, however, and it works well. If you’re new to Second Life, it’s one of those must-visit places.

NCI_222

NCI Major Locations

Popularity: 5% [?]

Metaverse Aid

Late last year I wrote on Metaverse Aid, which is a team on the Kiva website.

I just wanted to take the opportunity to encourage anyone involved with virtual worlds to join the Metaverse Aid team and make a real difference to entrepreneurs in developing countries. Each loan is just that, a loan, and you can reinvest the amount paid back in another entrepreneur.

Read more about Kiva and Metaverse Aid here.

Popularity: 2% [?]

Italian Earthquake Benefit in Second Life

I won’t embellish this announcement from Australian Second Life resident, Rebelmuum Slade, on a fundraiser being held tomorrow morning at 6am AEST (1pm SL time):

When disaster strikes the global community of SL unites in love and acts fast.

One of the wonders of this marvellous community is the closeness of people from all over the globe.

Last week our Italian friends were shocked by an earthquake that killed many too many and left so many more homeless and injured. The Phoenix Wave Mentors decided to put on a benefit to help those in need.

The following invitation recommends making donations directly to the Red Cross. For those who want to donate lindens or bid at the auction on the day we will dedicated jars with one person responsible for ensuring all lindens are givne to the Italian Red Cross.

Should you wish a deeper look at this wonderful story of love across the oceans, Ghost Trefoil is the benefit Co-ordinator and Ghost Ulich is the founder of Phoenix Wave Mentors.

Please pass this invitation to your groups and help us to help others in need. AND of course we would love to see you there!

We have a wonderful line up of entertainers who donated their talent to organise and entertain, who gave items or selves for auction :)

1pm – Rush Parkin – opens with his new special song and then conducts the first auction
2pm – dune burt (Italian DJ) entertains and leads the way to the second auction
3pm – 5pm : Alexdancemusic (Italian DJ) Takes us through to the end and hosts the next 3 auctions

Some auction items – auctions will occur just after each hour:

- 2 hour personal modelling lesson and a professional portfolio,
- 2 weeks on the beach in a lovely little (SL) holiday house.
- A 2-hour PG date with Ghost Ulich
- 2 hour personal tour with author of star journey Richard Geer. Plus a copy of the ebook
- A 2 hour PG date with Rebelmum Slade
- Personal styling indulgence with lillyanne lewsley ( new skin, shape, clothes, eyes, etc )

5.30pm Total Lindens raised announced – reciept from Italian Red cross will be posted in PW notices

Cheers Rebelmuum Slade

Popularity: 3% [?]

Relay for Life in Second Life: teams being formed

A yearly highlight in Second Life is the American Cancer Society’s Relay for Life. The 2007 and 2008 events were big successes, with more than 55 million Linden Dollars (approximately 200 thousand US dollars).

relay_2009

Teams have started forming and if any Australian or New Zealand teams are forming, do let us know and we’ll promote your fundraising efforts. The team registration form can be found here.

The Australian Relay for Life is a superb community event for a lot of towns and cities. The Second Life version achieves that same community vibe and it’s an opportunity to remember those lost to cancer, to support those currently fighting cancer and to help find more effective treatments for cancers.

Thanks to SL Entrepreneur Magazine for the heads-up.

Popularity: 5% [?]

Virtual world IP: not a steal

post-like-a-pirate1 Virtual environments and the public Internet sport a bewildering array of economies, from purely fantasy economies to real money trading between users. Fundamentally, many of these are currency-based economies which we all understand – you purchase something you value and give something of value in exchange. That is, you buy something you want with some manner of currency.

People generally have a whole lot more trouble with various license agreements, such as the GNU Licenses , or the Creative Commons licenses. Infringements of these licenses are common, and when challenged the infringers are often rather baffled. Either they do not understand that the content can be misused, or they do not understand why the ‘license nazis’ seem so put out.

Let’s break it down.

None of these licenses is technically ‘free’. Yes, they involve the use of content for no monetary cost, but that isn’t the same thing. There are multiple definitions of the word ‘free’ and if you apply the wrong ones, at best you’ll be confused, and at worst you’ll end up looking like an ass. So, these licenses are ‘free’ as in ‘no monetary cost’, but they are not ‘free’ as in ‘given freely for no exchange in value’.

These licenses are your basic, free-market, capitalistic contract. The owner of the property has something of value (the exercise of certain rights with respect to that content) and their release of some of those rights under a license makes that value available in exchange for something of value to them (your compliance with the terms of the license).

You both get something you want out of it, in short. That’s basic capitalism at work. Money need not be a component of the exchange, demagoguery notwithstanding. However, this is the fundamental principle that a lot of people miss, because they mistake the various different definitions of ‘free’.

If you take the content and use it in ways that don’t comply with the license terms, it is essentially the same as refusing to pay. That is why people get steamed about it. The rights to use the content in certain ways is given to you based solely on your agreement to comply. No money is changing hands, but ongoing compliance to the terms of the license constitute the payment for the usage.

Vint Falken was surprised to find that a texture that she made available under a Creative Commons Attribution Non-Commercial No-Derives license was being sold by a number of merchants in IMVU, some of whom claimed it as their own original work. Some of those merchants were even more surprised that she had any rights to her work at all.

KirstenLee Cinquetti quit providing her Second Life viewer binaries when pressed to comply with all the terms of the licenses that she was required to uphold in order to retain her permission to distribute viewer binaries. Some licenses require more compliance effort than others.

If you were handing over currency to obtain the necessary rights, that would be one thing. However, the purchase you are making is paid for with ongoing compliance to the terms. Quite often, you can simply arrange some alternative licensing or purchase scheme with the rights-holder. If you don’t, however, these licenses aren’t as simple as clicking ‘Yes, I agree’ somewhere and forgetting that you ever saw it. They’re contracts that require you to uphold your part of the bargain or lose what you gained.

Trying to evade or cheat the obligations under which content was granted to you wins you no friends either. As Bruce Perens points out:

don’t look for, and use loopholes in the Open Source licenses. Nothing makes your company look worse than taking unfair advantage of people who provided their work to you without charge, expecting in good faith that you’d honor their license.

Why? Because you took value from someone without the intention of paying the asking price. And that upsets everyone.

It really is as simple as that.

Popularity: 5% [?]