There’s not a lot to add to the great description provided by the creators:
“Between Worlds: A Journey of Hope” is a machinima produced by Panacea Luminos of NY HealthScape (USA) filmed and edited by Aliceinthenet (UK) and written by Skylar Smythe (Canada). The inspirational piece is a story of cancer survival and accessing health information, supports and friendship in the virtual world of Second Life. We invite you to visit: http://tinyurl.com/3esr334 to view the film and encourage your feedback and comments.
The Boston University Medical Center continues its work on health and virtual worlds, succeeding in gaining a US$950,000 grant from the US National Library of Medicine. The funding is for a study on the efficacy of using Second Life for Type 2 Diabetes education with African-American women versus more traditional face-to-face interventions.
You can read more detail on the study here, but there’s one key strength of the study that stands out for me: quantitative health data. Each participant will have cholesterol and ‘diabetes control’ blood tests taken before and after they receive the education sessions, as well as blood pressure readings.
The results of the study are likely to be be groundbreaking: either virtual worlds-based interventions for diabetes will be shown to be effective, or a very large challenge will be laid down to virtual worlds advocates if the results aren’t of the quantum expected. This is a study to watch.
One of the advantages of being a regular (daily) observer of virtual worlds news, is you get a fair idea of trends. One growth trend over recent months has been the interest in the health applications of virtual environments.
One of the better pieces of media coverage is one by the Wall Street Journal. It’s well worth the read for anyone after a useful overview of where things are up to. The article is also pretty well balanced, citing the limitations of the approach:
The online world isn’t perfect, though, as Carol Kilmon discovered. An associate professor of nursing at the University of Texas at Tyler, Dr. Kilmon wanted to train students to respond to emergencies such as a man in cardiac arrest or a boy having trouble breathing.
But in early testing, she has run into some hitches. Many students have older computers that can’t support the Second Life system, or live in rural areas with iffy Internet connections. And it takes them a long time simply to master moving around in the virtual world. “They’re not necessarily gamers,” Dr. Kilmon says. Still, she’s pressing ahead.
That sums up the challenges very nicely, but the last sentence is the crucial one. There are hundreds of health professionals who see the potential of immersive virtual worlds for health professional training. It’s those same people who will eventually help the technology become a key aspect of a comprehensive curriculum.
In recent weeks, thanks to a health professional colleague, I became aware of a research project underway at Murdoch University, looking at the use of virtual worlds as a support mechanism for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s an ARC funded, three-year project titled Isolation, illness and the Internet: Exploring the possibility of a second life for sufferers of ME.
Chief Investigator for the research is Kirsty Best, a lecturer in Communication and Media Studies. She kindly spent some time explaining the research project and providing some insight on the wider issues faced by those with ME/CFS. There is also a further viewpoint after the Q&A section from Alex, an Australian living with ME/CFS who has been taking part in the project.
DH: To start off, can I get you to tell me a little about yourself, your specific role at Murdoch and with this project?
KB: I’m a Senior Lecturer with the School of Media, Communication and Culture. I received an ARC Discovery grant last year – the project and the centre are the result of that grant but I am planning to keep it going after funding runs out.
DH: So the part we’re standing in now contains resources on ME/CFS?
KB: I have created some user-friendly resources about ME/CFS. They’re aimed both at people with ME, who end up having to do a LOT of research on their own due to ignorance of the illness, and the general public. We also have a calendar of what’s going on. Then over here I have some major ME/CFS websites that I have found the most useful and user-friendly, with various theories of the cause, various treatment protocols and also support groups.
DH: With the cause theories, how have you assessed their validity?
KB: That’s not my area of expertise, and it’s not about that. This is about giving people with a very misunderstood illness the resources they need to find out more, get support, and be heard. I’m not a scientist. Some of our members are very interested in the biochemistry, etc and in our mailing list and groups the discussions often end up talking about some of these things.
DH: Absolutely – but what I’m getting at is how do you determine that the information is clinically sound? Let’s say an illegitimate site popped up making incorrect claims that could cause harm – how do you screen that?
KB: I don’t screen that. There are a lot of competing theories out there. I am just providing links to the sites that provide the best summaries of what has been said so far. To be honest, VERY little scientific research is even conducted about ME/CFS
DH: Ok, that makes sense. I suppose what I’m getting at is some of the value add for virtual worlds and health can be to provide guidance on the evidence-base or to debunk incorrect information.
KB: That is not what my work is about. I am not looking into causes and effects. I have no training in that. I am looking to provide people with ways to overcome their social isolation using virtual media. This area is a very small part of what the centre is about.
DH: Can you tell me a little about the research you are conducting here?
KB: It’s ongoing. I’m interviewing people with ME/CFS from Canada and from Australia about how and whether computers and the Internet help to ease some of the isolation they experience due to their illness, getting them set up with an avatar, getting them oriented and then seeing if SL is a useful way of supplementing some of their other Internet-based activities or whether it is too hard.
DH: Can you give any details on the methodology you’re using in the research e.g. specific qualitative or quantitative methods?
KB: I have conducted the first round of interviews, we will be having focus groups then more interviews. It’s all qualitiative.
DH: So how large is the first group?
KB: Thee’s roughly forty people.
DH: Can you describe the experience of the interviews and activities to date?
KB: Some had to drop out because of the requirements of SL: they didn’t have broadband for instance, or a fast enough computer. Real accessibility issues. But to be honest, the most important accessibility issues for people with ME are not just about hardware or bandwidth. It’s an illness that affects all systems in the body, including cognitive, and so orientation and navigation become very problematic. I do a LOT of troubleshooting. But there are benefits people are experiencing as well. It’s a mixed bag. A series of tradeoffs. People really like the social interaction, but getting their heads around the technology is hard.
However I have to say that Second Life DOES give an experience that is unique, and that people like. At the last meeting, one of our members who hadn’t been able to make it in a while said that when she saw us standing there, she felt like running up and hugging us, if she knew how to do it! She said how it really made her feel like she knew these people, and since she is pretty much housebound, having the visuals and the voice, and the virtual environment really made a difference. I’m not sure it’s worth the tradeoffs for some people, but for some it definiitely is – it depends on people’s levels of dysfunction in relation to spatial orientation to a large extent.
DH: What made you choose CFS as the research topic? Was it a personal interest?
KB: I’m very passionate about it, yes. These people have the worst of all worlds. They have a devastating illness in terms of quality of life, they have very little support from the medical community, and have to do pretty much all the research themselves–which of course they don’t have the energy for. And they have very little support from their friends and family. In fact this comes up quite a lot, and people are CONSTANTLY saying how their friends and family don’t believe them. or don’t support them, or what have you. And so this place is somewhere they can actually be understood.
DH: Was there a specific event that led you to understand how hard it is for CFS sufferers?
KB: I have a close family member who has had ME/CFS for – it must be 12 or more years now. It prompted me to do a lot of research about the condition. Let’s just say that whenever I try to explain the condition, or this project to anyone, I experience it for myself. I get very defensive. People with cancer or MS don’t feel they are having to constantly justify their illness. It’s very draining. And I”m healthy! It’s FAR worse for them.
DH: In regards to lack of support from the medical community, why do you think that is?
KB: I have been involved with volunteering for an organization in Canada that was actually LAUGHED at by a doctor when they approached him to see if he would speak at an ME/CFS Awareness Day. I think it’s changing slowly though. But very slowly. The Canadian Consensus Definition is extremely important to this – all the other clinical definitions have been sorely lacking.
DH: So for you, what would be measures of success for you, for both the research and the support here more broadly?
KB: Well success for the research would be finding out in what ways virtual environments such as SL can help this marginalized community, despite their cognitive and spatial difficulties. Hopefully we will find out specifically what is working and what isn’t. We already take our members to Virtual Ability island, who have been very helpful. But there are still a lot of ways that the evironment is very challenging to people with ME/CFS, as I have said.
I’m not sure these can be overcome completely. I think part of it is intrinsic to technology itself. There will always be these black holes where the technology fails us, no matter how advanced it gets, because bugs and usability issues are eternal. And for someone with ME/CFS, these are magnified 5000 percent. So I guess success is simply finding ways of amelioriating these black holes, if we know what to look for. I don’t think this environment will ever be for everyone with ME/CFS, but for those it reaches, its impact can be profound. I would say that is success.
DH: You mentioned that ME/CFS sufferers can experience cynicism from some health professionals – if this research demonstrates outcomes as far as social support, could this make those cynics sit up and take notice as whether they ‘believe’ in ME or not, the results will speak for themselves and need to be acknowledged?
KB: It doesn’t prove anything about the nature or reality of ME however. Unfortunate but true. I think you only have to speak to these people and be around them for a while to understand. See them totally struggle with things we find complely simple and no big deal. So I think the only thing that will potentially change someone’s mind is if they were to come here and join us for a few weeks! However, I think it’s really a culture change that needs to go on in both broader society and in the health community.
As there are more and more individuals coming forward and publicising their experiences (in books, online, in other media), as there are more and more projects and support groups and spaces such as this one that are springing up, then the community and the illness can’t help but be noticed. At this point, the culture of cynicism will hopefully slip and be replaced. So I guess I see this is a tiny brick in the wall. I do want to use it as a way to generate awareness in the broader SL community at least. I would like to hold events here and so on. How many health professionals there are that use SL I don’t know!
DH: There are quite a few 😉 Could you forsee collaborative research in the future, with say allied health professionals, on the use of virtual worlds as a support mechanism?
KB: Oh yes, that would be great, but that’s not about changing anyone’s mind. Those health professionals would already be open to it. The people who don’t believe, you can’t really budge them. I hear this over and over again from our members. I believe it. However, as I said, it is changing slowly, so there are some people who would be more open in the first place. They would be the kind we could collaborate with. The “early adopters” so to speak.
=== Alex’s perspective:
Firstly, due to my illness I frequently do not enjoy being on Second Life. This isn’t about fun, it’s about need. I am too sick to function in the real world, but Second Life gives me just that – a chance to interact with people and alleviate the worst affects of severe isolation, in combination with a sense of being in the world, albeit virtual. (I play open world RPGs for much the same sense of being in the world). SL still makes demands on my health, just not as much as real life. One of the big issues is preventing desocialisation – we can become so isolated that we no longer relate to other people. Second Life allows for avatar-to-avatar talks, which while it isn’t as good as real life it does have its benefits.
For the first time I have met another person with long term ME/CFS who has similar health to me. Most people involved in CFS support groups are female, so there are very few long term male patients, and it turns out our experiences are very similar in ways that differ from most of the ladies.
Of course, I am also a long-term advocate for scientific research into ME/CFS, and this is not the first study I have been in with respect to ME/CFS, although this is the most prolonged sociological study that I have been involved in. I don’t know where this is going, and there are risks, because ME/CFS is one of the diseases in which charity and support groups occasionally fail because everyone involved can be too sick to keep things running. I do wish the researchers success in their aims, and I do see potential for this to provide social support for people too sick to find it in real life.
One of the drawbacks we keep running into is a combination of technical problems and illness issues. Some of us can’t handle too many people/avatars being around, and this is aggravated by sound degradation issues when too many people are present, particularly since most of us have problems with adapting to new technology. One fix is being tested at the moment, breaking us into smaller groups, but we have to move far enough away so that SL doesn’t pick up our speech. Large crowds of avatars in any part of SL are likely to cause problems for many of us.
In the past week I received a note from Kerri McCusker (SL: Kerri Macchi) about a project completed for the Serious Games and Virtual Worlds Team, University of Ulster in Northern Ireland. Second Lives sets out to demonstrate a more recent approach to dealing with Crohn’s disease: autologous stem cell transplant.
It’s yet another example of simulation as a useful adjunct for wider learning experiences. The level of complexity of this simulation is more at the patient education level rather than as a health professional training mechanism, but with further evolution it could obviously achieve both aims. I certainly learned a lot more about newer treatment options for Crohn’s disease. Anyone who’s been involved in the care of an individual with the disease knows that anything that improves health outcomes is a highly desirable thing.
Appendix: Sample of information provided by Second Lives Clinic
Welcome to Second Lives Medical Clinic.
This virtual clinic is a showcase of the process of the autologous stem cell transplant in Crohn’s disease.
Cellular therapy with stem cells is revolutionizing the focus of treatment of many serious diseases. Replacing the cells of damaged tissue with other new cells from the same patient is already a reality. This is the basis of cellular therapy and regenerative medicine, the latest great advance in biomedicine. In this line, Hospital Clínic, Barcelona is leading the world in the application of an innovative cellular therapy that uses stem cells to treat Crohn’s disease, a chronic genetic disease that affects 1% of the population in Spain and which has considerable impact on the quality of life of the patients. The procedure is based on an autologous bone-marrow transplant (when patients receive a transplant of their own stem cells) and now constitutes a treatment option to cure an intestinal disease that sometimes does not successfully respond to drugs and requires highly complex surgery that does not provide a cure.
Hospital Clínic, Barcelona is one of the few hospitals in the world to apply this new therapeutic option for patients with Crohn’s disease, and it does so with the guarantee of success experienced in the US and Italy, where the technique has been tested with excellent results: in an average follow-up period of 6 years, 80% of transplant patients are in a phase of total remission of the disease and the remaining 20% have shown considerable improvement following the transplant, and are now responding favorably to drugs. Dr. Julián Panés and Dr. Elena Ricart over the Gastroenterology Department of Hospital Clínic, Barcelona are the driving force behind this therapy in Spain and began to implement regenerative cellular therapy in patients with Crohn’s disease in August 2008. To date, a total of 6 patients are benefiting from this new treatment. The transplant requires several weeks of admission to hospital before patients receive their own cells. The procedure is the same as that carried out in bone-morrow transplants to cure leukemia or myeloma.
Autologous Stem-Cell Transplant: Phases of the Procedure
When the case is detected (that does not respond to drugs or surgery), the patient undergoes an autologous stem-cell transplant, which is a bone-morrow transplant in which the immune system is reset to prevent it from attacking the intestinal flora. The process lasts approximately 2 months and consists of 6 phases:
1. Initial Chemotherapy (Cyclophosphamide + G-CSF). In this initial phase, the reduction of the number of leukocytes (immune-system cells) in the blood is induced in the patient.
2. Migration of Stem-Cells to the Blood. Following the previous immunosuppression, the organism reacts by releasing stem cells from the bone marrow into the blood; these are the cells which will later be used for the transplant.
3. Collection of Stem Cells by means of Apheresis. Apheresis is a technique that separates components of the blood. Here, the stem cells that previously migrated from the bone marrow are separated.
4. Cryopreservation of Stem Cells. When the stem cells have been collected by apheresis, they are frozen and preserved until ready for transplant.
5. Second Chemotherapy. In this phase, total leukopenia is induced; that is, the immune system is left devoid of leukocytes, ready to be reset with the stem-cell transplant.
6. Autologous Stem-Cell Transplant. The patient receives the transplant by means of transfusion with his or her own stem cells. The immune system is reset, leading to remission or reduction of the abnormal inflammatory process of Crohn’s disease.
1. Fourteen physicians participated in the pilot, with twelve providing feedback.
2. The learning exercise was related to Type 2 diabetes, with participants surveyed on any change in confidence and performance, as well as attitudes toward the virtual learning environment itself.
3. Confidence increased after the Second Life event, in respect to selecting insulin for patients with type 2 diabetes, initiating insulin and adjusting insulin dosing.
4. There was an increase to 90% (from 60%) of participants initiating correct insulin dosages.
5. The percentage of participants who provided correct initiation of mealtime insulin increased from 40% to 80%.
6. All twelve participants surveyed agreed that their experience in Second Life was an effective method of medical education.
7. All twelve also agreed that “the virtual world approach to CME was superior to other methods of online CME, that they would enroll in another such event in SL, and that they would recommend that their colleagues participate in an SL CME course.”
8. Two of the twelve disagreed with the statement that Second Life provided a superior to face-to-face option for continuing medical education.
The take-home message? Nothing new really: virtual environments can be very useful for education. The small sample size is obviously worth noting. Additionally, I remain amazed at the positive feedback garnered for education sessions held in Second Life given the rudimentary aspects of the platform itself i.e. the need to type responses in chat and viewing what’s essentially a Powerpoint presentation (as shown in the picture above). That’s not to take away from the work the University of Boston have done, it’s just one key aspect for future studies: how much of the positive feedback on virtual environments is the ‘wow’ factor experienced by newer users versus the well-established data on immersion and its benefits?
Another key point for me was this:
Our search of English language peer-reviewed publication databases did not identify any formal evaluation of the educational effectiveness of health professional training in SL or other virtual worlds.
Studies like this one are helping to address that gap, but there’s plenty more to be done. What’s fairly certain is that work is underway and within 12-18 months there’s likely to be a significant body of work pointing out the opportunities and challenges virtual worlds present for health-related training and education.
I’m noticing a slow but steady trickle of mainstream news reporting on the opportunities of virtual environments and health. The challenge is to ensure there’s really solid evidence to back those claims when they receive more widespread scrutiny.
Over the past few days a product announcement and some interesting research have come together for me in illustrating some of the downsides of heavy regular use of virtual environments. I’m talking specifically about the physical impacts here: we’ve covered the psychological positives and negatives repeatedly (e.g. here and here). In regard to the psychological side, I’ve always believed the benefits and opportunities well outweigh the downsides, which is being recognised by professionals working in the area.
The research that caught my eye comes from the American Journal of Preventative Medicine, as reported by MSNBC. The researchers tested the hypothesis that gamers tended to be more overweight and had poorer mental health than non-players. The results, after surveying 552 people in the Seattle area of the US, showed that the hypothesis was essentially correct. Looking at the overweight issue, most people may say “well gee there’s no surprise there”. The gamer stereotype is certainly one of the overweight male staying up at all hours whilst eating endless bags of potato chips. Like any stereotype there can be distorted echoes of reality and this research is doing just that. I doubt there’s anyone claiming that heavy gaming or virtual environment use is good for one’s physical health in respect to exercise and nutrition. Sure, consoles like the Wii are increasing the level of physical activity but the jury is well and truly out on whether it equates to other forms of desirable physical activity. This research was conducted in 2006 but only published now, with an admission it’s just a taste for further research needing to be done – its findings however do point to the challenges for gaming, and by association, virtual environments.
The product announcement that I saw not long after the research above was for an MMO-gaming mouse produced by Razer, called the Naga. Here’s Razer’s PR pitch for it:
It’s not unique in that there’s no shortage of multi-button gaming mouses. What struck me though was the twelve buttons on the left-hand side that are designed purely for thumb use. Knowing the pace of MMO gaming at times, it seems astounding to me that you’d put one thumb through the trauma of operating twelve buttons continuously. In the five minutes-plus of sales pitch above, you’ll hear the word ‘comfort’ a few times, but that’s it. You’ll also hear a couple of mentions of statements like “playing all day” as qualifications for the level of effort that went into producing the design.
Am I alone in thinking that no matter how good the device’s ergonomics are, relying on one digit to control twelve buttons is a recipe for disaster? Sure, the heavy use of a keyboard for the same activity isn’t ideal either, but usually the repetition is spread around a few more digits if keyboard shortcuts are being used. Of course, gaming is different to broader virtual world use, but in proportion the same issues remain.
My point overall? Virtual environments are really no different to the real world in respects of the need to engage in physical activity. The ever improving development of new interface options may assist, but the reality in the short to medium term is that plenty of real world concentration on nutrition and exercise is needed. The three people I know best who are involved in virtual environments 8-16 hours a day all own pets and tend to have an exercise schedule. Do you?
British firm Daden have been releasing virtual worlds products for a while now – we covered their in-world web browser last July. Their latest launch is an “open-source learning system or virtual worlds, the web and iPhone”. Its moniker is PIVOTE and it’s the result of a project called PREVIEW funded by the UK Government’s Joint Information Systems Committee (JISC). The project’s focus was problem-based learning in virtual worlds, and PIVOTE is the end-result. Paramedic training for St George’s, University of London was the initial focus that’s led to final product.
Essentially, Pivote is a web-based learning management system where detailed exercises can be formulated as fairly standard, text-driven scenarios with decision pathways, or as avatar driven exercises in Second Life or OpenSim (Daden states its platform can easily be adapted to other virtual worlds). The text-based options can also be utilised in-world via what is presumably Daden’s in-world browser. St George’s have a sim in Second Life (click here to see for yourself) that is publicly accessible.
St George’s Senior Lecturer in Paramedic Science, Alan Rice said “This programme provides the students with a fun learning environment, where they can afford to make mistakes online, which they could not afford to make in the real world. When they make a mistake online, they are always keen not to make the same mistake again.” A paramedic student at St George’s, Fiona Cropp, was happy with the virtual training process – “It’s a really useful tool. It’s much better to be able to actually perform treatments rather than just talk about it. Everyone is online at the same time so you can bounce ideas off each other and make an informed decision. I had never used Second Life before, but I found it really easy to get on with.”
A useful overview of the paramedic training scenario can be viewed here:
Pivote isn’t the first integrated training solution using virtual worlds, but it’s certainly progressed things considerably. The challenge for any platform is convincing key management that scarce health dollars should be sunk into virtual worlds-based training. Health professionals and academics are perfectly positioned to demonstrate just that, and there’s no shortage of evidence of the cost benefits of effectively trained clinicians. Anything that increases the confidence of new practitioners in the breadth of the clinical decision-making in a cost-effective way, will surely gain some traction in what is usually a very conservative space.
Anyone wanting to install PIVOTE for themselves can do so for free by installing it on their own servers or paying Daden to host it for them. The full instructions can be found by browsing the ‘Getting Started’ section of the PIVOTE website.