SL Research Study (w/Incentive)

[jeswiceg]

I work for a nonprofit research organization and we are conducting a research study within Second Life of users who currently have or have EVER had a chronic medical condition. This is 1 of several studies we have conducted in-world since 2009. The research has been thoroughly reviewed and is being conducted under strict ethical guidelines and clearances. The only eligibility requirements are that you are a U.S. resident and that you have a chronic medical condition in real life. If you have any questions or concerns at all, please feel free to send me a message. All study participants will receive L$1,000 for their time. 

The first step is to complete this very brief screener survey to determine eligibility.

http://www.surveygizmo.com/s3/699158/f3070c235f46

Thanks,

Jessica Davenport 

[Argus Collingwood]

Might help if you could give us some examples of Chronic Medical Conditions;-)

[Irene Muni]

---

jeswiceg wrote:

I work for a nonprofit research organization ...

---

Name please?

---

jeswiceg wrote:

... and is being conducted under strict ethical guidelines and clearances ...

---

The first ethical guideline is that the possible users of the research know that guidelines and clearances. Where are published?

 

 

 

[jeswiceg]

RTI International (www.rti.org) 

 

[Morgaine Christensen]

Been many legitimate researchers in SL over the years, but just as many illegitimate folks posing as researchers bilking SL Residents.  It can make it tough for actual researchers.  

I think before anyone goes to an anonymous web site that could be run by anyon,  for good, or bad purposes, perhaps you can supply us with more information regarding this research project?  How about a direct link to the research project you have stated has been thoroughly reviewed? If it has been reviewed, has it been published? Where has it been published? What are the results of these prior studies.  Do you have direct links? What is the name of the current research project this survey is linked to? Is this a private research project?  Public? NIH funded?  Do you have the name and an email address of the lead researcher, who can be contacted for more detail? 

[Perrie Juran]

---

jeswiceg wrote:

RTI International (

www.rti.org)

 

 

---

you may be non-profit, but which of these clients is funding the study?

http://www.rti.org/page.cfm?obj=1F591C75-ABC2-4A84-9951C76CD07E0437

I left out the guberment.

 

Private-Sector Clients

Abbott Laboratories

Amgen

Arkema

AstraZeneca

BASF

Bayer Yakuhin, Ltd.

Biogen Idec

Boehringer Ingelheim

Bristol-Myers Squibb Co.

Chevron Corporation

Cisco Systems

Dow Chemical

DRS Technologies

DuPont

Eli Lilly and Company

GE Healthcare

Golden Pacific Laboratories, LLC

The Hamner Institutes

The Johnson & Johnson Family of Companies

Johnson Matthey

KBR

Lockheed Martin

MedImmune

Medtronics

Merck & Co., Inc.

The Nielsen Company

Novartis

Novo Nordisk

Ogawa & Co. USA

Pfizer

PhRMA

Qualcomm

Roche

Sanofi-Aventis

Shell

Shire

Takeda Pharmaceuticals UK

Talecris Biotherapeutics

Talisman Environmental Services, Inc.

Teva Neuroscience

Tioga Pharmaceuticals

U.S. News & World Report

Other Clients

Abu Dhabi Executive Affairs Authority

American Heart Association

AIHA Proficiency Analytical Testing Programs, LLC

American Legacy Foundation

ASHRAE

Bill & Melinda Gates Foundation

Ford Foundation

Global Alliance for TB Drug Development

Hewlett Foundation

International Partnership for Microbicides

Ministry of Foreign Affairs of the Republic of China (Taiwan)

National Multiple Sclerosis Society

Robert Wood Johnson Foundation

Royal Military College of Canada

Smith Family Foundation

Spencer Foundation

U.K. Department for International Development

U.S. state governments

The World Bank

World Health Organization

[jeswiceg]

Absolutely I can provide more information.

There is currently not a specific website pertaining to this study, other than RTI's main website. However, this will give you an idea of some of the work that we do, including the research we conduct and some of the projects in which we are involved. For more specific information about previous studies, publication record, results, etc. you can contact the Project Director, Saira Haque, PhD. She can be contacted at 1-866-RTI-1958. Also, if you have questions about your rights as a study participant, or concerns as to whether the research has been properly reviewed, you can contact RTI's Office of Research Protection at 1-866-214-2043. 

The study has yet to be published as we are currently in the process of collecting data from Residents. The name of the study that this survey is linked to is the Digital Life & Wellness Study. It is paid for and conducted by RTI International. 

Please feel free to contact Mrs. Haque with questions about other RTI research projects in SL. Also feel free to IM me with specific questions. 

[jeswiceg]

Paid for and conducted by RTI International. 

[jeswiceg]

These links can give you a better idea of past research studies in SL:

http://journals.tdl.org/jvwr/article/view/621

http://ssc.sagepub.com/content/early/2011/05/23/0894439311410024.abstract

http://www.rti.org/publications/rtipress.cfm?pub=15645

[Feldspar Millgrove]

I think this is a cool project and would like to learn more about it.

"This survey will be coordinated in Second Life" and "the questions asked are about your real life".

Many (most?) people on SL do not want to link their avatar and their real-life information.

RTI's computer systems will apparently be collecting personally identifying information, including at least the following: avatar name, real life medical conditions; possibly also name or email address, and possibly IP address (inside SL and/or your web site).

I am curious about the steps you are taking to protect privacy, including policies, and technical steps, especially regarding the part that is done in Second Life.

Besides the many things that are under RTI's control, there seem to be third-party issues.

1. For example, while one might imagine that avatar names are used for anonymity, they are of course linked within the LL customer database, which is not under your control, and which could be disclosed. (And there have been customer database breaches at Linden Labs in the past.) Also, people's avatar-to-real-life identity can be disclosed in many other ways, within and outside of SL, by third parties. Finally, people may not be expected to keep their avatar's identity secret forever, mistakenly thinking or forgetting that they used it for such purposes as your medical survey.

2. Also, certain avatar-to-real-life information is (unknowingly to most people) are collected and correlated without real consent all over SL. (This is through IP addresses on audio/media/streaming logging; it used to be that IP addresses were not very useful location information. But nowadays they are much more useful, especially if combined with other data.)

One assumes you are doing some kind of participant anonymizing.

Are you treating avatar names like real names?

What are the privacy features of your protocols to account for inadvertent collection by your systems, and by the way SL operates (e.g. nearby chat, possible "bugging" scripts, HTTP proxy operations through Linden Lab's servers, etc. etc.), and third-party breach correlation possibility?

Ethically, participants in your survey cannot be considered competent to give consent for the collection and use of their information: they're not going to understand their Second Life / real-life PII or any the implications. How do you address this?

I assume you must already have an understanding and a plan for, since this is a survey that is purporting to "to test the ability of researchers to collect health-related data from residents in Second Life."

I might like to take your survey. I am curious about privacy in the entire chain of collection, handling, analysis, and data retention phases. First I would like to hear your response to the above. I would like to review the ethics and data handling portion of your IRB materials.

[Feldspar Millgrove]

I forgot to mention in the above...    Linden Lab has a permanent record of everything that happens inside SL.  This includes not only chat (including "private" instant messages, messages chatted to a script over a channel, etc.), but also all the actions you take.  Where you go.  How long you are there.  What you see. Everything you touch (including a "survey" device), etc.  Very detailed.

Linden Lab's data retention policy is ambiguous; it has sometimes been advertised as being limited to a few months.  But from personal communication with former executives at the company, I know that while they were saying that, they were "keeping everything we've ever collected".   That was a while back, but it suggests to me that you cannot rely on their policies.

But the main point about that is that Linden Lab is potentially handling private data from your survey: they are the platform you have selected.  And yet they are not neutral and have no agreement with RTI to protect the information, regardless of RTI's privacy policies in this survey.   LL collects detailed data, which they consider to be theirs, not RTI's nor the participants.  They are probably incapable of protecting it, even if they wanted to (which, in this context, they do not want to).

So an additional factor is how you ensure that while using SL, Linden Lab does not automatically capture any of the private information that you get people to disclose (them thinking that only RTI is getting it).  I would like to hear your technical and policy analysis of this, in addition to the questions I asked in my previous message.

Very curiously yours.

Thanks!

[Millennium Sands]

So LL has a permanent record of everything I've seen in more than 4 years, huh?

In other words: They've always monitored my client settings, like Draw Distance, Focus Offset, Camera Offset, Camera Angle, Camera Offset Scale, etc. along with my camera focus. And they will never ever forget that on March 23, 2008, at 04:31 PM, I looked.... ehm... at a wall.

Well, I finally get an idea where all that server power goes in SL! I only wonder how many employees they need to review all the data I'm constantly producing, even when I do nothing. Oh, and I also wonder if you actually believe what you wrote.

[Madelaine McMasters]

My radar is beeping here, jeswiceg. As mentioned by others, your study seems to fall under HIPPA, as you are requesting medical history information from RL individuals. Your eligibility survey already asks sensitive questions before obtaining informed consent. Some of the respondents may have RL information in their SL profiles.

I'm not a HIPPA expert, but I think I could make the argument that you have already violated HIPPA guidelines.

[Lynda Baran]

I'm more worried about the federal government having unfettered access to my medical records as part of the "The Patient Protection and Affordable Care Act".    If they can't keep the Pentagon computers secure, what would make anyone think that they can keep my medical records secure.    LOL

[Tari Landar]

It may or may not help their case any, but I have participated in a study they did in sl in the past. The actual info they ask for, and you give them, isn't very personal, actually. In fact you don't give them any rl identifiable info(they didn't ask for rl name, email address, etc..) At any time you can say you don't want to answer a (or any) question and they will either end the interview, or move on to the next question. But it really was very simple, very quick(took longer to go over HOW to answer than it took to make it through the interview, as in they have to go over the instructions, they really do behave quite professionally with it, imo), definitely not what I thought it would be as far as how in depth they actually go with the questions. I only did it because they offered a $ incentive(just being honest here, lol).

They definitely don't do these "studies" the way most people I've seen have done them in sl.

[namssab1nad Piers]

I took this survey.  It was quick, easy, and not against any HIPPA laws or rules.  In this case HIPPA only concerns itself with what information a medical caregiver or insurance company can give out about a patient or customer.  Since there is no corresponding link between the survey (which you can take using your normal internet browser) which only asks for your avi name and NOT your RL name, then HIPPA does not apply.  I highly recommend that everyone take this survey. 

[Perrie Juran]

---

namssab1nad Piers wrote:

I highly recommend that everyone take this survey. 

---

 

Why?

[Tari Landar]

---

Roseysun Galicia wrote:

About HIPAA:

From the HHS.gov website:

• Protected Health Information.
  The Privacy Rule protects all
  "individually identifiable health information"
  held or transmitted by a covered entity or its business associate, in any form or media, whether electronic, paper, or oral. The Privacy Rule calls this information "protected health information (PHI)."12

RTI, or the company paying for the survey,

may or may not

be a covered entity or a covered entities

business associate

or business contract. Meaning the survey

may or may not

be covered by HIPAA or other regulations regarding medical information and privacy. I have not seen a Disclosure statement or Privacy Policy Statement in regards to the survey.  Which is why I asked for one

here.

About the Link from Avatar to RL:

The survey is asking for Chronic Health Conditions (from page 5 of the screening survey): HIV Status, Cancer, Asthma, Chronic Pain, Diabetes, Heart Problems, High Blood Pressure, Respiratory Illness, Rheumatoid Arthritis, Overweight/Obesity.

LL Collects:

• IM's
• Account information
• Credit Card/Payment Information on file (which includes RL name, Address, etc.) 

As pointed out in this thread some avatars have RL identifiable information in profiles, or used RL names for Avatar Names, etc. thereby creating a link between an Avatar and their RL identity. 

---

I think everyone knows what LL collects, but that doesn't say anything at all about what the *company* performing the survey actually collects. Do you think LL is going to share the information they have on you with this company? As far as I know, they don't. The company doesn't go asking for it either.

I can promise you as someone who HAS actually not just taken the survey for an interview but actually gone through the interview process already, they do NOT ask anything personally identifying in their interview at all. Even the questions they do ask about the medical stuff, aren't all that personal-and in fact they aren't even identifiable, really. They ask some basic questions, actually nothing more than I've seen in thousands of other surveys over the years(except, for once, this company actually conducts the surveys in a business-like manner, which is somewhat unusual for SL, they're upfront, can provide links for information, and, well, they're nothing like 99% of the "research studies" we see, lol). If people put their rl info in their profile, they don't really have a whole lot of room to later complain that someone might put two and two together. That seems rather silly to have to point out, but, yeah.  I have a rl pic in my profile, and I'm well aware that anyone who knows me, or really feels like searching me out, can likely figure out my rl identity if they truly wish to. I don't understand how anyone could *not get that. If I cared, it wouldn't be there.. So, umm, yeah, don't want companies or people being able to put two and two together, then don't put it out there for the world to see.(I still don't understand what that actually has to do with this, since it's an optional survey-no one is holding a gun to your head and telling you to take it, and, like I said, they're not asking for that information from you to begin with. So there's no reason you should feel you have to hand it out to participate. Or, you could just not participate. Shrug)

Maybe my participation in rl medical studies has my opinion slightly skewed, but, I don't get the hubub about this, I really don't, lol.

[jeswiceg]

Because RTI is not a covered healthcare provider, health plan or health care clearing house, and Protected Health Information (PHI) is not being collected and stored in tandem with identification, HIPAA does not apply.  We do not ask for RL name or contact information in our survey. Avatar and user names will be separated from the survey responses for analysis. Access to survey results will be limited to RTI employees who require the information to conduct analysis of the results.  It will be stored on our secure servers and destroyed after a year.  We take privacy and security extremely seriously, and our study is being conducted under the oversight of an Institutional Review Board through RTI’s Office for Research Protection and Ethics.  If you choose to participate, you will be able to review a consent screen which outlines this information before continuing with the survey.  If you have other specific questions or concerns, please let us know by contacting me in-world or calling the principal investigator, Saira Haque, PhD, at 1-866-RTI-1958. 

[RudolphUkka]

Just say

*

no.

***

Rudi

***