Breast Cancer Emblem

(sara burnell): good afternoon everyone. i'm (sara briss-burnell) and on behalf of the national cancer institute, i would like to welcome everyone to the november research to reality cyber seminar.

in early summer we issued a call for abstracts asking community members to share their experiences using new and social media tools in an innovative and effective ways. we were so delighted by the strength

of the submissions that we decided to hold a two-part series on this important topic. today's session will highlight two diverse programs that use software as a median for community research and education.

with the ubiquity of smart phones most of us use mobile applications or apps designed to run on smart phones, tablets and other mobile devices on a daily basis. some may be familiar with second life,

a free virtual world where users can socialize, connect and create and share services using voice and text chat. today's cyber seminar will highlight how these platforms have been used to engage audiences

around key cancer control initiatives. (debra wolmer-valkey) of the texan a&m school of world public health, and the texas life science foundation will join us to share an overview of the aya healthy

survivorship app. designed for adolescents and young adult cancer survivors, this (unintelligible) application allows users to assess their health habits using theory-based interactive tool, and gives survivors individual scores for lifestyle,

nutrition and well-being among other indicators. dr. versie johnson-mallard of the university of south florida will demonstrate the virtual environment second life and how it was used as educational intervention

to increase the knowledge of hpv. dr. johnson-mallard will discuss the ethicacy of second life as an educational intervention in improving knowledge of hpv, a virus linked to causing cervical cancer. the final part

of the webinar will be dedicated to q&a and discussion, and will offer you the opportunity to engage with the presenters and share your own experiences, thoughts and lessons learned. full bios for each of today's speakers are also

available on the research to reality dot cancer dot gov, where you will also be able to engage in discussion form on today's topic, as well as view the archive of our previous cyber seminars. as always, the final part of this call will be devoted

to your questions and comments. at any time during the presentation please press star one to be placed in the queue to ask your question live during question and answer portion of this seminar, or if you prefer, you can also submit your

questions using the q&a feature at the top of your screen, just type in your question and hit ask. we thank you all for joining us today, and look forward to this important and informative topic.

with that i'll turn it over to miss (debra valkey) to start us off. (debra)? (debra wolmer-valkey): yes, thank you so much (sara). thank you for the opportunity to do this. as usual, i have no conflicts to disclose.

what i'd like to do is kind of walk through today's discussion. first of all i'll provide background on aya, or adolescent young adult cancer survivors, and why we selected this population for our application development.

i'll give a brief overview of the emerging field of (m-health) and the application of health behavior theories; and also discuss some opportunities for what we believe are the need for some new theoretical

or framework development. i'll review the development of the app itself including the budget, the technology and our collaborators, and how we worked interactively with them. then we'll give a brief tour of the app itself,

and finally some of our lessons learned and the next steps. so why an app for ayas, adolescent young adults, which i continue to refer to as ayas, are cancer survivors in the ages ranging from 15 to 39 years of age,

which is a pretty broad group. they've been a focus of national investigation in the u.s. and actually internationally for the past eight years, since the national cancer institute and live strong foundations first joint progress

review group on young adolescent young adult oncology was convened. fyi, this group was reconvened on a member of it, and there'll be a new report coming out soon. in the u.s. we diagnose about 75,000 ayas a year.

we think there about 20 million of them globally. overall, unlike older and pediatric cancer survivors, there has been little improvement in survivorship among ayas in the past two decades. the cause of this lack

of survival continues to be explored with consideration of both biological and social factors that affect survivorship. clearly, quality of life among aya survivors is an area of concern,

especially due to the lasting effects of chemotherapy and radiation treatment, and the effects especially on younger bodies. if you consider that older cancer survivors that are diagnosed generally

around the ages of 60 to 65, may only have 20 years of survivor. that's important survivorship too. it's concerning. for the ayas diagnosed in their teens or twenties may have 40

or 50 more years of survivorship. there is a longer period of time for late effects to emerge and require attention. clearly, we believe there is some health behavior changes that can improve the quality of life among ayas.

that was one of our rationales for selecting that population, or this population for the app development. the other is clearly (sara) mentioned how ubiquitous smart phones are for all of us. in the u.s. smart phone adoption, and also globally is

among the highest in this age group according to the (pew) internet and american life research study. additionally, this population also has the highest adoption of what we call (in-health)

or mobile health apps for physical activity and diet. we approached our app development with a desire to look at both evidenced-based interventions, and a strong theoretical grounding. the elements

of current health behavior and communication theories and framework such as social cognitive theory, health behavior change, and elaboration likelihood provided us with a strong theoretical background for many

of the behavioral elements functionality and aspects of the healthy survivorship act, including the assessment, the daily tips, and the provision of health education materials. as we were developing this app, we really became aware

that the current set of theories don't quite support some of the behavioral aspects of the app design. mobile health or m-health as i'll refer to it, includes a range of functionalities and capabilities

that didn't really exist when any of our theories were being developed. functions like (entra), individual tailoring, ecological momentary involvement, that means that they've got their phone in their hands,

and their getting messages and acting on them in the moment, tailors feedback in their own time and sensitive interactive and adaptive aspects of mobile-enabled health behavior tools, suggest that there may be need

for new theoretical paradigms, that our current set just aren't quite up to the task. that said, we did look at a lot of interventions and research in m-health from other chronic disease areas including cancer, asthma and diabetes.

our development process is what i would consider extremely iterative. the initial funding for the project came as a grant from the texas a&m school of public health, ttx cares, which is a cdc cancer prevention and control network project.

the ctx cares pi, principal investigator dr. (marsha oree) provided the funding, and was absolutely vital to the development of the project all the way along. we were able to leverage the initial 40k,

40,000 with an additional 2,000 in marketing funds from a (ceton) healthcare facility grant for aya professional and public education. our technology decision to use ios platform was based partially on the budget amount.

we didn't have the funds to do both an iphone and an android app. we knew we wanted to reach the largest possible audience. so this was two years ago, and at that point in time there were more iphone

apps than there were android apps. actually, that continues to be the place, the situation. we also wanted to make sure that some of our applications; our functionality was available to a broader audience at times when they might not have

their phone. so we developed what we call a hybrid approach to native phone app. native means that the application is native or lives on the phone, and most of the activities occur on the phone.

we mixed it with a responsive web site. responsive in a web site means that the web site can be seen and used by both mobile devices, using mobile browser, or a desktop or laptop. what the responsive web site does is it actually tailors the

size of the image to the device that you're using. most importantly we leveraged the professional and advocate and survivor aya support groups from our (ceton) grant, and they provided us guidance and insight into the design, and helped us

as we developed our requirements and our use cases for the project. our health care professionals included nationally recognized aya cancer researchers and oncologists. our advocates included aya survivors and cancer advocates

from groups like livestrong, critical mass, komen, and i'm too young for this. i really cannot say enough about the value and the insights from these advisory groups in the development of the app. so this is a screen shot of the web site,

healthy survivorship dot org. dr. (ross glasgow) recently of nci and now with the university of colorado, i think considers projects like this as pragmatic research. we wanted to be able to quickly test whether and if cancer survivors were

interested in using health behavior change apps. we wanted to explore how best to engage diverse groups of researchers, advocates, oncologists and technology professors in the creation of the app. pragmatic research

by its nature implies trade-offs, so you learn that some things-- you learn some things, you can gather some data, some metrics, but it's not like a randomized, controlled trial. you're not getting the same kind

of information. not all the functions and the capabilities of the app were available to us. so with that, let's take a look at the app itself. i spoke about our collaborators, and again we wanted to recognize them in the app.

this is an information page on the app. once the user downloads the app from the apple app store, it opens to a disclaimer page and the user has to agree to the terms of use, privacy and security to go forward. then they never see

that page again, but they can find information on it again on the ipage. building healthy survivorship really did take a village. we engaged with a great number of collaborators, both in developing as we continue

to disseminate the aya app. i think that all of these groups deserve, and continue to deserve a lot of credit. many of their materials were used throughout the app. this is the homepage, the screen shot of the homepage

if you will of the app. so it shows the iphone functions, (entro) and health, which kind of gives the user guidance on how to use the app, the survivorship assessment, screening and late effects, survivorship planning tools and tips and community.

we've spent a lot of time on the look and the feel of the app. we really wanted to have a clean, modern image. our advisory groups weighed in on almost every element, what the functions would be, what the icon looked like,

what colors were used. we really wanted the assessment questions to be user friendly, unlike some of the health assessments that you might see in a hospital or any kind of clinic. we want it to be something that the users would actually

engage in and think about. we built the app in about 80 days. for the most part, we would build one section at a time, send it out, test it, play with it, us it, make adjustments, and then go

onto the next section. i think that my having a software development background helped immensely, and being able to make the trade-offs and negotiate among what the aya survivors told us they wanted, what the advisors and oncologists thought we

should do, the opinions and suggestions of the graphic designer, and the technology co-developers who worked with us. it was constant conversation. i'm going to skip this one and come back to it. so these are some screen shots

of three of the app areas. the health assessment, you'll notice that there are different icons in the upper corner. so there was an icon for well being, there was an icon for healthy habits,

one for healthy diet and physical activity. healthy habits, we consider things like not smoking, not binge drinking; achieving energy balance, things like that. in the healthy diet connection

and healthy diet group of questions, i think there are about 27-30 questions overall. we provided a bmi calculator. as an example of the kind of discussions we had, the technology group wanted to show a little figure in the results that would shrink

or swell based on the user's bmi. so if the user had a high bmi, well it'd kind of look like the michelin man. we didn't think that was quite user appropriate. so what we ended up with was just a scale showing

the different ranges of bmi and the weight status. actually, this is one of the more popular-- from feedback we've heard that this is one of the more popular areas of the assessment. the individual's assessment

history itself-- so these are the opening page, and then the final assessment score on the right; the app keeps the very first assessment the user makes, the most recent one and then the current assessment. so three different scores are

available at all times once the user starts. it allows the users the ability to track improvements or changes over time. there's a score-- if you look at the-- on the right hand side you'll see on the bottom their scores

for each of the areas. then those are kind of combined together in an algorithm that provides the user with an overall assessment of their healthy survivorship. following their assessment, they get a page

of tips and kudos. again, this is where we began working more with the whole idea of mobile persuasion providing tips and information to drive change or to encourage change. the algorithm that works

with the tools and the information in the assessment also drives a tailored tip and kudos. so in this one the tip is related to changing one's diet and eating more healthy fruits and vegetables. the kudos is based on something

that the user did well or had a higher score in. so the tips and kudos are again examples of building on the theory and the evidence to make the app a driver of health behavior change and mobile persuasion.

the user can choose or can agree to be delivered with a daily phone set. these pop up on the phone one time a day. they're in each of the areas, well-being, physical activity, diet and nutrition. they're kind

of in your hand reminders tips of things the users can do. this is about using fat free milk. there's also one on using the stairs, which i find is very influential. this gives you the example

of really one-- what i believe is one of the most powerful aspects in functionality and health. the phone's in your hand, it's in your purse or pocket, these reminders can come to you in a moment, and actually may change

or influence behavior change. actually, this was another area where our users gave us valuable feedback. the tips used to be delivered at 11 pm. one of the users in the advisory group called, and asked me

if we could make a change to the time of delivery of the daily tip. i said sure, what time and by the way why do you want it to change? she said, he slept with his phone and the tip woke him up,

and it pings whenever it was delivered, and he felt he just had to pick it up and look at it. so we knew they were using them. now, this is-- i skipped this earlier, but i want to come back to it, i mentioned how important

and how critical the late effects are for cancer survivors, and many of them have almost a ptsd syndrome where they constantly think that there's something wrong with them, that the cancer is going to reoccur.

this is not unusual for cancer survivors. this area of the app has two functions; one is routine screenings. again, these came from the documents of the cancer-- the children's oncology group.

they are the evidence-based guidelines for aya screening. for example, female ayas who had mental or chest area radiation have a startling high incidence of breast cancer as a second cancer. they need to be screened eight

years after treatment or at age 25, whichever is later. they may not know this. so again, this was an educational aspect. eventually the children's oncology group generously allowed us the use

of their help links. here, it's probably kind of hard to see, but the help links are easily accessed (pedia). they're kind of one-page briefs, written in very plain language on a variety of late effects that may be experienced by ayas. many of these are available

in both english and spanish. again, the ability to disseminate and communicate these broadly to this audience was really a very, very important thing. we are so enormously grateful to the children's oncology group for allowing us

to put these directly into the hands of the ayas. the other element, one of the other functions with the app is encourage the survivors to develop their own survivorship plan. actually, this is an area that's being updated

in the next few weeks. we originally planned for the survivors to use a cloud-based database to login and create their survivorship plans, but our concerns for hippa compliance and texas-specific legislations,

and concerns for privacy and security changed our minds. now what we do is we provide links to both the live strong and the journey forward plans. so, this is a screen shot from live strong, which they can link directly to, or they can link directly

to survivorship care plans by journey forward. we also wanted to have a community. again, this is based on social behavior theory, for them to respond to. we thought about at first creating a private social

network, but in the end it is like using facebook. so the users have a facebook page they can go to and they share information on the app and on other things. our current utilization, remember that i had said with the app being native it's

only so much information that you actually get from the (unintelligible). it's slim. this is a snapshot of current utilization. we have 650 users. fifty-three users have downloaded.

i hope we have more after today. sixty-six percent of them use the assessment. users take an assessment on the average 2.12 times. some of them take it a lot more; some of them take it, never go back to it. the average user visits the app

about 2.87 times. so, kind of in summary, the aya app is really an example i think of pragmatic research, and it's an intervention that applies evidence-based functions, and applies a number theories in trying to provide increased health

related quality of life for aya survivors. we're continuing to explore communication and dissemination of the app with our partners and collaborators, including a number of advocacy groups and nurses

in aya clinics. our app is a hybrid, and we can continue to explore building hybrids, but kind of in a reversal. we're now building light versions of the apps with the main elements and functionality to be kept

in databases. so we actually can have more access to the information, kind of lessons and learned and next steps for us. you need to plan for ongoing maintenance and updates. apps aren't a build once

and forget about it. there's always something that needs to be improved or updated. you want to keep it fresh and add new functions to engage the users. given this, it's important to choose your technology

partner wisely. it's also a good idea to keep your own copy of the code so that you can change or adapt the app if for some reason you need to find a new technology partner.

as i suggested there is kind of a lack of data for researchers from the native apps or apps that run on the phone, which is why we're advising our health behavior researchers and those who want to create apps to look

at hybrid models that include some lightweight apps that can be marketed and downloaded on the iphone app store and the android (unintelligible) plus. this also provides for greater security and privacy

of data in case the user loses his phone. in talking about where we're going, in the meantime since aya was developed, we developed two additional apps for cancer survivors using geographic information technology or gis.

i can fit is a research project that encourages goal setting and provides a gis locator for healthy places for physical activity. the (unintelligible) locator, which was developed for life beyond cancer foundation,

is an interactive mobile map for non-clinical resources. we're also beginning to look at sensors and using sensors and gis together. i think that (unintelligible) have great potential for health behavior change, and we think it kind

of gives us a brave new world. i hope that all of you are considering it, pursue them, and i'll always be glad to provide any guidance or help that i can. that concludes my presentation. so what i'd

like to do now is turn the slides over to dr. versie johnson-mallard from the university of south florida. versie? versie johnson-mallard: (debra) thank you so much. that is such an exciting and useful technology.

please allow me to introduce myself again. i'm versie johnson-mallard. i bring to you greetings of south florida and our (unintelligible) (diane morresett-beatty). i have no conflicts to share. i'm going to spend a few minutes

talking about technology, specifically second life that i've used to-- as a virtual environment to increase knowledge around hpv. hpv is strongly linked to cervical cancer, and we'll talk a little bit

about this just briefly. we know that hpv is a virus, with that being said, there's no cure. what we do know is that hpv is strongly linked, and hpv high-risk strains are strongly linked to cervical, anal, oral and penile cancer.

we're learning more and more every day about orthogonal cancer. we also know that it's linked to genital warts. we do have prophylactic vaccines, bivalent and quadrivalent vaccines. the bivalent vaccine is actually

marketed as an orthogenic vaccine, not licensed for men. the quadrivalent vaccine is marketed as orthogenic and wart prevention that is marketed for men and both women. while we're here today is to talk about second life,

and how this internet-based application plays a role in cancer prevention, specifically the sequel of hpv. well, there's 20 million users of second life as of today, 20 million or more. among those 20 million each one has a unique avatar.

avatars are digital personas in which-- once they enter the 3d world, they can become an animal, the can stay a person, a female can become a male, ethnicity, gender, anything that you can image can be changed within your personal persona, which works well for me

because my population was college students. my hope is that for them to take on a different persona that was actually made them comfortable moving around within this environment to learn about this viral sti. the great thing is

that the internet is everywhere and anywhere. you can be at a park, you can be at coffee shop, you can be in your own bedroom. when we're talking about this platform, sexually transmitted infections are a private matter.

so wherever you want to gain this information, increase your knowledge, it's that person's call. it's real time. second life is real time. it also allowed me to get real time information and immediate response

from my study participants as they move through this first pilot test. so again just a little bit about the sample, the majority of them were females within their second year of college. again, this is just a depiction

of some of the personal personas that the college students took on while they were in this virtual world. here you can see, this is when you first come into second life and go into our island, this is the entrance

into our platform. before you could actually enter this, because it was a study, a research study, i did provide a disclosure. as you can read here, we talked about stages of diseases, and we talked about several different

viral stis. today we're going to focus on hpv. so before the study participant can enter this 3d world, they had to read and accept that not everyone is familiar and how to manipulate your avatar.

again, there was a video that was embedded into second life so that the study participants could learn to walk, and learn to fly around in second life. putting one foot in front of the other is not that easy

in second life if you do not have some experience with it. so within that this video was embedded and it could go forward, fast-forward through it or repeat any sections that they felt the need to, to learn how to use the avatar

within this world. once they entered the world, there was one entrance and one exit. the 3d world was set up like a maze. so as they move through it there were invisible sensors there.

i use the sensors to capture my data. i could tell how long they would stay at certain teaching areas or teaching platforms within this. there were educational boards. once they interacted with these boards, walked away,

within 10 seconds there was a timer that would re-close-- that would recover the boards so the next person came through. this is what i call an hpv patch. so within this hpv patch the minute (inga) lands there, the sensor senses her

and provides me with information such as how long she's-- how much time did she spend walking around this patch looking at genital warts on the pupas of a penis or within the anus? then as you look up, which you can't really see,

but depicted here, again more information. that is (inga) wanted to support what she was seeing, there was more visual information there. as long as (inga) was there the timers captured how long she was there.

this is another example of an information board. this board actually showed external genital warts from mild to severe on the vulva of a female. then when whomever was there, once they walked away, this board was automatically

become covered again in ten seconds. so it was more than just kind of walking around and then reading information. we attempted to also make it interesting and find ways to make it stimulating.

so this is a simulation, first it starts off with just kind of giving them information about the external warts. then it gives instructions to walk into the simulation. it makes it clear to walk into the simulation of a vagina.

once they reach the end of this vagina that there's a cervix with different stages, moderate to mild dysplasia. so the avatar again will enter this vaginal canal. then they would end up facing the cervix here.

so the time and the minute they entered the canal, the timer started and i would then allow them to have the ability to capture how long they stayed and viewed this cervical dysplasia. here's another example again

where they were more interactive. so as they moved around, again this was a maze so they couldn't skip any part of it. they move from one area to the other. at a minimum they had to touch

or interact with whatever's there for seconds or minutes, however the timer was before they could move here they were instructed to-- they would tap here with hpv. then they would try to match hpv with cervical cancer,

or hepatitis b with jaundice. each time they did this matching correctly, they earn points or their scores increase. this was again a test of their knowledge about viral stis. not only did i get the (unintelligible) back

to the correct number they got correct, but also the time that they spent there, and if they came back to manipulate that. this was research study. this was the second part to a first-- there was a first part

where there was a then the control groups were invited to enter this pilot study. i don't expect that you can read this, but this is just a process flow as to how that research study went.

so there was (belinda) who was a research assistant, would get the emails of these participants. the participants then would be emailed a url. this url was a token, in second life we use the term token.

so once they received these tokens they could go in, register within second life and change their email to something other than their university email, and then this email was not tracked with their avatar. the avatar that they created is

now their avatar going forth and forever. then they would get the token, and once they received the token, created the avatar, they were now allowed to enter, and make sure that it was again clear, they would receive an adult

consent form informing them that they were now agreeing to become part of a research study. that's kind of how the process went. again, this was just a process flow to kind of give you an idea how

this works. now, the programming, none of this can be possible without a strong team. so the programmer (lissa) and i, we used live survey, and live survey it's a free, open-source online survey, in which we use.

this provided the adult participants the adult consent form. then we also use (moodle). (moodle) is where the study participants, once they've chosen an avatar and named that avatar, all of that information was

stored there and matched with their email address. so that was kind of the way. again, this was a pre-test/post-test study, so we needed a way to follow that through. we had to restrict access to this because second life is a

virtual open world. our island, we restricted it to-- the only way you could get to our island was that once you receive that token, then that token allowed you to enter our island,

so that our data was not skewed in any way. this type of research, this type of platform does require high-speed internet, and web hosting. i've shared with you that my sequel and php was used as a web hosting

supporting browsers. there are many, from firefox to ms internet explorer. the later the software the better this seems to run. budget. so in order to capture this and to maintain it we rented an island, a new island eight.

we rented this island for-- this study was 12 months in length. it costs us 1,100 dollars to rent this island, which is about 1000 u.s. dollars. the programmer i hired and the researchers i hired

as ops, hourly wage. the programmers used her instructional design along with my health care background to create the games, the platforms. i knew what i wanted. she knew how to make that happen in design.

each and everything that you saw in this platform took time. it wasn't like you could take wallpaper and kind of just put it up. everything that instructional designer actually built. so she set up the domain, did the configurations,

build and exhibited it, and then she hosted it the entire time that we were running this study. so as part of the-- at the end again you see another token to exit it. at that point they would email the survey,

and the survey results with this pilot study provided me with useful information in the sense that the majority of the participants had no experience with second life, but again about more than 40 percent of them said that they found this type

of platform for research very useful. quickly, the next steps, i would like to now move from a pilot study to a feasibility study. this study was a-synchronized. i would like to use this amphitheater here to build a--

if you can imagine it, it can happen. so i imagine making this more of a synchronized session, much like we're doing today, a set date, a set topic and invite the avatars, these personas to join the topic and dialogue real time

with questions and answers and an information session. so that's the next step for second life and how i plan to use this as a research study. nothing happens alone. nothing happens on our island by itself. this is the research group

that i-- this is the research team that i had the pleasure of working with. (lissa) is the programmer with (belinda) being the research assistant and my research team there. none of this would have been possible without the funding

of the rebel, which (unintelligible) scholars program. so with that said, i will turn it over to (sara), and we'll open it up for questions. thank you.