Author Archives: Moderator

Bringing HIV/AIDS Information to the Heart of the Commonwealth: University of Massachusetts Medical School

The University of Massachusetts Medical School (UMMS) Lamar Soutter Library is excited about the launch of the AIDS Community Outreach Project, “Bringing HIV/AIDS Information to the Heart of the Commonwealth”. The project is a collaboration between the Lamar Soutter Library, AIDS Project Worcester (APW), and Worcester Public Library (WPL). The outreach project aims to improve the lives of those living with HIV/AIDS in Worcester and surrounding communities by increasing their knowledge of the disease through awareness and utilization of National Library of Medicine (NLM) HIV/AIDS resources through training, information outreach, and resource development. NLM resources include AIDSinfo, AIDSource, ClinicalTrials.gov, MedlinePlus, PubMed, and Public Health Partners.

The project includes building a training room at AIDS Project Worcester, train-the-trainer sessions conducted by the Lamar Soutter Library for AIDS Project Worcester and Worcester Public Library staff and volunteers, who will then provide training sessions as part of their outreach efforts. AIDS Project Worcester staff will train UMMS and Worcester Public Library staff on PrEP Navigator procedures in Central Massachusetts, then UMMS staff will train the partners on specific PrEP Navigator resources available through the NLM. Updates are planned to the AIDS Project Worcester website through a collaboration between project consultants and AIDS Project Worcester. The project also includes usability testing to better understand how APW staff, volunteers, clients, and the public use the website, along with a coordinated social media campaign to promote NLM resources and the services available from the project partners. In addition, Worcester Public Library will expand their collection of print and audio-visual resources to increase the quality and quantity of HIV/AIDS resources available to consumers in the Worcester area.

The “Bringing HIV/AIDS Information to the Heart of the Commonwealth” project improves the visibility of the services available from the collaborators and highlights the resources available to those living with HIV/AIDS, their families, caregivers, and at-risk populations in the Worcester area. The collaborators are very enthusiastic about the potential of helping clients and patrons get reliable HIV/AIDS information and the opportunity for them to learn computer and Internet searching skills, empowering both health care professionals and their patients. We are looking forward to the evaluation aspects of the project to hopefully support the successes of the project and provide lessons on areas for improvement in the future.

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YTH: Final they2ze Update

YTH provides a final update on their 2016-2017 ACIOP resource app, they2ze, and shares highlights and challenges associated with connecting transgender-spectrum youth, young adults, and providers with access to HIV and health-related referrals.

they2ze is a mobile application (app) created by YTH, designed by transgender spectrum youth (TSY) and their providers, and funded by the National Library of Medicine. they2ze was designed to assist TSY and their providers with access to inclusive and vetted HIV and health resources, best practices, and referrals. Launched in May of 2017, the app now has over 200 downloads, was featured at the national youth tech health conference YTH Live 2017, and has been a tailored resource for the TSY community in and around the San Francisco Bay Area. Additional funding has been secured for the second phase of the app (they2ze2.0) with plans to expand resources and access statewide throughout California and featuring a new PrEP navigation and PrEP management adherence tool. With the excitement of they2ze2.0, YTH takes a look back on some of the highlights and challenges that were presented since the inception of the they2ze app.

CAB: The development of this app would not have been possible without the hard work of the they2ze community advisory board (CAB). CAB members provided insights for the need, design, feel, and content from the community in which the technology was built. It was an inspiring and exciting piece to the development of this app! “Young people are having pivotal conversations around gender…”, community member Aaron Steinfeld notes, “they2ze meets that need for young people to find and interact with resources meant for them as they advocate for themselves and navigate their lives”.

ACIOP

The app while providing a means for self autonomy and exploration also functions as a tailored space dedicated and vetted for TSY and has been able to take into account all of the different barriers TSY encounter when accessing a medical provider. “Countless times I’ve been to a space I was told could help me with something…” community member, Tapakorn Prasertsith comments, “I’d show up and the groups would be out of my price range, or not meant for youth, or required insurance, or something else unexpected. There’s a specificity in these places on [they2ze] and now that I’m intimately familiar with many of them, can attest to their tags”.

Graphic Design: The acceptance from the TYS community has been incredibly positive with relation to the look and feel of the app itself. The color scheme and characters of the app has been highly accepted by the TSY community, where users can identify with many of the digital characters presented on the homepage of the app. The visual design has also attracted TSY-serving providers within the community who have provided praise. “A lot of apps that are niche apps look like they are somebody’s dream child”, says Dr. Mosser of the Gender Confirmation Center of San Francisco, “they are very amateurish, but [not] this app. I was speaking with someone just recently about how blown away we both were that they must have a team of designers, user interface experts, and coders, that really know what they’re doing because it’s a really flawless execution for something that’s, a niche project; a really important project but something that’s really focused to a specific demographic.”

Reach: With over 200 current downloads, maintaining an active increase in user downloads has been one of the main challenges associated with they2ze. Because the app targets a very specialized and concentrated community, whose access to inclusive digital information may be limited, they2ze’s exposure has proven to be a bit more successful when done in-person. The they2ze team has attended numerous events, such as the SF Pride Transgender March, and has teamed up with local businesses to table and promote they2ze. Further, youth who identify somewhere within the transgender spectrum (from questioning all the way to transitioning) do not necessarily identify within the LGBTQ community. Keeping our marketing broad and specific has been a key to getting the word out, and a challenge in the same respect.

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YTH and the they2ze team teaming up and tabling with the Gender Confirmation Center of SF for a Charity Benefit hosted by SoulCycle in the Castro

 

Coverage: Currently in the pilot phase, the they2ze app development and TSY/provider resources encompasses the geographical area of the San Francisco Bay Area region. App outreach and marketing has been focused on this region, however, the app has managed to make its way across the nation with downloads occurring outside of the SF Bay Area. YTH’s team has received out of state users and providers who have requested additional support in states like Florida, Utah, Massachusetts, Minnesota, Missouri, and Arizona–to name a few. YTH is excited to see the acceptance and feasibility of the app as a desired need beyond the pilot area, and hope acquire the resources to expand the app even further than the next phase’s California expansion.

Provider Support: With the opportunity for more TSY-serving providers to have access to a digital resource and referral network useful for their practices and patients, providers have given exceptional support for the they2ze app. A few supportive comments about they2ze:

“As it stands right now, there is a hodgepodge of micro networks of trans folks and the people who care about them who are constantly asking for recommendations for the same services. Most of our orgs are budgetarily constrained and lack the staff needed to build strong community-wide networks of support. It would be revolutionary to be able to link all these providers together with all of these queer micro-networks of support in one portal [like they2ze]”

~ Nicole Vanderheiden, a Chief Administrator at TransForming Families in

   Minneapolis, Minnesota and frequent ACLU guest columnist

“I can use they2ze to assist patients to find resources. Even LGBTQ providers can benefit from apps that help find LGBTQ resources.”

~ they2ze Provider user

Overall, YTH has been pleasantly surprised with the amount of excitement from users who are out of state and are hoping that they2ze can one day become a nationwide system of support.

The they2ze app is now available for download for iOS and Android users.

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they2ze: A Comprehensive One-stop Trans-inclusive Shop

YTH provides an update on trans health and their 2016-2017 ACIOP resource app, they2ze, designed to help transgender-spectrum youth and providers access HIV and health-related care and referrals.

they2zeblog

they2ze is a mobile application designed to assist youth and young adults who identify within the transgender-spectrum to access inclusive and vetted HIV and health resources, best practices, and referrals. The app was created by YTH, with the help of the National Library of Medicine, and is an advanced new development for trans* youth, young adults, and their healthcare providers.

This tool offers a new avenue in disseminating NLM HIV/AIDS resources to a traditionally hard-to-reach population. Transgender-spectrum youth (TSY) have historically struggled to find and access inclusive health resources, particularly in one place. One community member, Jaxon, notes that “Being a trans-guy in the Bay Area, I always need to find a doctor, or a support group, or something new, every day.” Medical providers who provide services to TSY often express a need for a place to find best practices and resources.

YTH recently sat down with Dr. Mosser, a Board-Certified and renown “top” surgeon and co-founder of the American Society of Gender Surgeons and the Gender Confirmation Center in San Francisco, California to discuss the impact that an mHealth app like they2ze can have for its users and providers.

 

DrMosserYTH

Dr. Mosser on they2ze and the inclusion of trans care

When asked if they2ze is useful for any provider, Dr. Mosser responded that “Somebody that’s super clued-in can use the app. Somebody that doesn’t know anything about trans care and is trying to get themselves oriented, there’s some very introductory stuff [here] as well.[…] I think the core users are going to be transgender individuals who are trying to find a safe space within health care of all sorts. ”

The app, although developed as a tool to access inclusive HIV resources and services in and around the Bay Area, also serves as one stop shop for all trans*-focused and trans*-identifiable needs. “It’s well beyond the umbrella of HIV-related care”, says Dr. Scott W. Mosser, “any transgender individual who’s interested in trying to find somebody who is going to provide a trans-friendly environment – whether it’s for a broken arm, convalescence, blood pressure check, or HIV – this app is going to be where they will go”.

they2ze is designed for both TSY community members and providers to navigate their own personal needs. Users can log into the app and find referrals and services based on distance, tags, and gender-related needs. Users can also log in and offer resource feedback by placing personal reviews, suggestions, and ratings based on their own experiences. Resources and referrals include STD testing centers, HIV services, hormones, legal aid, shelters, peer support groups, and mental health care. To support medical and service providers, the app includes a section for providers with inclusive patient intake forms, standard care practices for working with TSY and HIV, and a compendium of gender affirming resources. they2ze further provides users with the most up to date relevant news, videos, and articles on trans-related health.

The they2ze app is now available for download for iOS and Android users.

trans* is an umbrella term that refers to all genders on the spectrum

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Interactive eLearning Modules for People Living with HIV Now Available

d’Vinci Interactive (https://www.dvinci.com/) has released four interactive eLearning courses and assessment tools as part of a National Library of Medicine (NLM) funded project. The free online learning tools have been created in collaboration with POZ (https://www.poz.com/), an award-winning print and online information source for people living with and affected by HIV/AIDS, and the NLM HIV/AIDS Community Information Outreach Program (ACIOP).

Through scenario-based learning, learners in the first course determine if they have been exposed to the virus, if they have contracted the virus, and what they should do. The eLearning module explores different encounters that may or may not transmit HIV and what steps should be taken. At the end of the activity, learners can take a confidential survey to further identify personal risk and plan next steps, if needed. The course also includes links to additional information for those who think they are at risk.

The online learning and assessment materials are based on the popular POZ Basics materials and help individuals impacted by HIV/AIDS. The URLs to the online learning materials can be used to link to and/or share the modules:

POZ_1

HIV Transmission and Risks: https://www.poz.com/basics/hiv-basics/hiv-transmission-risks#amiatrisk

 

POZ_Testing

HIV Testing Basics: https://www.poz.com/basics/hiv-basics/hiv-testing#whentogettested

 

POZ_3

Newly Diagnosed: https://www.poz.com/basics/hiv-basics/newly-diagnosed#newlydiagnosed

 

POZ_aging

Aging with HIV: https://www.poz.com/basics/hiv-basics/hiv-aging#agingmodule

d’Vinci is in the process of analyzing the usage of the eLearning course and assessments. The first module that was published, HIV Transmission and Risks, has been viewed over 3,500 times. The second module, HIV Testing, has had over 1,400 views. Approximately 44% of the users of the eLearning and assessment modules are from the US, with significant groups from India, UK and Canada also utilizing the materials.

Over 300 individuals have completed the assessments that accompany the modules. Over 94% of survey respondents have rated the modules as “excellent” or “good” and 96% said that they better understood the HIV issues after completion of the materials.

The individual utilizing the modules are a mixture of people with HIV, family members/friends of those with HIV and individuals who are not sure if they have HIV. The ethnicity and sexual orientation of learners is diverse and income levels of a majority of learners is $50,000 or lower.

With 75% of learners using mobile devices, d’Vinci and POZ are focusing on targeted outreach to ensure the modules continue to increase in use. If you have any questions about utilizing the free online learning and assessment modules, please contact Jackie Ricords at jricords@dvinci.com.

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Transgender Health and a New App to Assist with Service Uptake

YTH provides an update on trans health and their 2016-2017 ACIOP resource app, they2ze, designed to help transgender-spectrum youth access services for their health.

they2ze

they2ze is a mobile application to assist young transgender-spectrum people in accessing services for their health, and promote comprehensive and inclusive services for the providers who serve this community. The they2ze app is now available for download for iOS and Android users.

 

YTH’s project they2ze is timely, particularly with the increased attention on transgender-spectrum rights (see the recent fights for bathroom access and the violence committed against trans persons of color). Trans-spectrum people include those whose gender identity does not match the sex assigned to them at birth, including but not limited to trans women (those who are assigned male at birth but identify as women), trans men (those who are assigned female at birth but identify as men), and genderqueer individuals (those who identify as any combination of women and men, and whose sex assigned at birth could be either male or female). (For more information, consult the online course, Acknowledging Gender and Sex, developed by the Center of Excellence for Transgender Health at the University of California San Francisco.

Trans-spectrum people continue to face disproportionate rates of many health issues, largely due to transphobic societal institutions and beliefs. In terms of health issues, the HIV epidemic among trans-spectrum people in the Bay Area is a well-documented one. Despite current advances in PrEP (truvada), HIV care, and the success of the San Francisco model, trans-spectrum individuals are still disproportionately impacted by HIV and are underserved in many health issues.

Trans women of color are at particularly high risk for HIV–the CDC reported that 58% of African-American trans women and 15% of Latina trans women were living with HIV between 2009-2014, and other reports state that an estimated 11%-78% of trans women in San Francisco are living with HIV. Less is known about trans men and HIV rates, largely due to trans men being left out of research and trials. Preliminary evidence shows that trans men who sleep with non-trans men may be at high risk for HIV. Trans-spectrum youth also face particular challenges—they rely on guardians for access to health services, hormones, and gender confirmation surgeries, and family is not always supportive.

“Trans youth and their providers often work in a vacuum with few other colleagues, peers or mentors who can give them information on where to find social and medical services by trusted and experienced providers,” said Erin Wilson, PhD, Principal Investigator of the trans health project The SHINE Study at SFDPH. “In a world with endless search pages, I’m so excited to say that YTH has worked in collaboration with community to develop they2ze. This resource promises to be a game changer in connecting providers to one another and youth to the best people to serve them.”

The downloadable version of they2ze is available on both the iTunes store and Google Play store.

Download they2ze for iOS from the Apple Store

Download they2ze for Android from Google Play

→ For more information about they2ze and YTH, visit http://yth.org/projects/innovate-they2ze/ or contact the Director of Programs, cara@yth.org.

 

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El Centro – Content Creation Part: 4 Content Development

In our previous blog post, we described the challenges of creating content that’s brief, educational, and entertaining. For our ACIOP project, community members asked for a variety of characters facing different situations, including some who are related, and agreed that the content could reference sexual situations but should not be explicit in showing them. They also wanted the option of choosing content that they felt was most relevant to them.

The creative team held several meetings to draft plot outlines, and decided on an approach we’ve come to refer to as a “circle of friends” story structure in which we have one main character who acts as a common thread among all the other characters. For these stories, that central link is Gabriel, a young man who’s questioning his sexuality. In this way, he reflects the experiences we’ve heard from many young men who have sex with both men and women but don’t consider themselves MSM or bisexual. We also hope his fluid sexuality will make him relatable to a wider audience. As main characters, the story also includes Gabriel’s cousin Angela, her mother Maria Elena, and his friend Mateo.

To keep content brief, we created five short episodes: the first four each focus on one of the four main characters, and a final episode wraps things up while also leaving open the opportunity for the story to continue in the future. The story moves sequentially through the 5 episodes, but each episode is also written in such a way that it can be watched alone and still achieve a learning objective.

Community groups convened to read the scripts aloud and provide feedback on the episodes, which are summarized below:

Episode 1: Mateo makes a new friend at the gym, Alejandro, and Mateo mentions that he’s heading to a nightclub later. That evening, Mateo chats with Isabel at the club, but she leaves with friends. Alejandro arrives, the two men drink more, and Alejandro goes to Mateo’s apartment with him. Mateo wakes up the next morning not sure what happened between them.

Community feedback: Some community members felt that Mateo was just using alcohol as an excuse to be with Alejandro and to claim that he didn’t remember what happened, rather than being honest about his sexuality, which was part of what made it realistic:  “It’s written perfectly and the issue at hand is clearly understood. It also has action in it and it’s modeled after real life situations.”

Episode 2: Angela and Mateo are in her living room talking about Mateo’s problems, and Angela encourages Mateo to be more honest about his sexuality. Mateo leaves, and Angela’s boyfriend Esteban arrives. Angela needs to study, but Esteban pressures her to have sex. Angela struggles but eventually gives in. After Esteban leaves, Angela wonders if he’s being unfaithful to her, and whether women can use the HIV prevention pill PrEP that her cousin Gabriel is taking.

Community feedback: Many community members said they had been in this situation themselves on several occasions: “It’s very relatable”; “I also noticed that she has no one to openly talk to about this situation to educate herself and feel comfortable. She feels alone and abused in a sense…”

Episode 3: Gabriel is on the phone with Angela, talking about Esteban. Gabriel is interested in having a long-term boyfriend, but also uses hookup apps to find casual partners. He’s on PrEP but doesn’t use condoms, and starts to wonder whether he might have an STI.  The next day he, Mateo and Angela are at Gabriel’s apartment and talk about going back to the clinic where Gabriel gets PrEP, but Gabriel is hesitant since he doesn’t want to admit he hasn’t been using condoms. Gabriel’s mother Maria Elena passes by and hears part of the conversation.

Community feedback: While many community members have medical providers they trust, Gabriel’s reluctance to visit the clinic was seen as very realistic: “[Going to the doctor means] suspense. A lot of people are nervous. A lot of fear.”; “[Doctor visits] are difficult.”; “[Doctor visits are] painful.”; “Even if you know your results are going to be negative there is always the fear of ‘what if I’m positive?’”

Episode 4:  Maria Elena is worried about what she’s overheard and is concerned the young adults might be at risk. Wanting to google more information about HIV and STIs, she grabs Gabriel’s iPad and finds a photo of him at the Gay Pride parade. She’s long heard rumors that he might be gay, but for her this confirms it. She has mixed emotions but most of she all loves her son, and her concern for his safety increases. Maria Elena continues reading information online, and decides to try finding a local clinic to help everyone get the resources they need.

Community feedback: Maria Elena facing her son’s sexuality and the issues he and his friends are dealing with was seen positively, as was her trying to learn more and find ways to help and understand without directly confronting the youth: “First thing [a Latina mom] would do is be in a state of shock, then cry, then educate ourselves…”; “…I would prefer her to have an open mind because if I’m going to love my kids… I am going to love them any and every way that they are. I will take care of them and always teach them. Take care of yourself, protect yourself and educate yourself. I would keep in mind what’s best for them.”

Episode 5: Maria Elena takes Gabriel, Angela and Mateo out to lunch. She’s chosen a restaurant that will ensure the group walks past a clinic on their way there. She stops in front of the clinic and feigns ignorance, asking Gabriel to explain what services they might provide. Maria Elena is encouraging about how nice it is that there are places young people can go for help. Maria Elena leaves lunch early, claiming she has errands to run but in fact giving the young people some private time to talk. They take the hint, and decide to visit the clinic together after lunch.

Community feedback: Overall they approved of Maria Elena’s approach: “I think it was excellent that Maria Elena made that decision because Angela seemed alone in this situation. When she was brought to the clinic, Angela felt happy about it and felt supported.”; “The most important thing is that [Maria Elena] sent them to speak to someone and gave them their privacy. Her approach was: ‘We’re here. Go find out what you need and I’ll be over there.’”

However, in the first draft of this episode, Maria Elena’s actions regarding the clinic were much more direct, almost as if she pulled a bait-and-switch by inviting the young adults to lunch but then trying to get them to go to the clinic instead, which was seen negatively as being tricky and deceptive. The scene was rewritten to show Maria Elena linking the young people to resources and showing her support in a more subtle, caring way, with a respect for their privacy, and with the young people then making the choice together to accept the recommendation.

Other minor edits to wording and character interaction were also suggested and incorporated into our final drafts. For example, the initial greeting between Angela and Maria Elena was rewritten to be more familiar and affectionate, to reflect how the community described the family closeness would normally be expressed.

With our stories finalized and our artwork in development, our next big step is to choose a name for the project. We’ve opened voting to our community members and colleagues, so feel free to give us your input and to share this link with others!

https://www.surveymonkey.com/r/ACIOP2017


All the El Centro blog entries were written by Christel Hyden.

Christel Hyden is a public health consultant with over 10 years of experience developing and evaluating health education programs and materials, with an emphasis on multimedia and technology based interventions. She also serves as Director of Research and Evaluation for the Harlem Health Promotion Center at Columbia University, and holds a faculty appointment in the Department of Family and Social Medicine at Albert Einstein College of Medicine. Dr. Hyden has an MS in applied social research and an EdD in health education.

 

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El Centro – Content Creation Part 3: Content Development

Multimedia storytelling can be a powerful tool for reaching communities in non-traditional ways, but also poses challenges we don’t face when creating a brochure or a poster. Holding community meetings to discuss and review content is a crucial step for resolving the many issues that can arise when trying to create materials that are both entertaining and informative.

In these types of projects, primary challenges include:

  • Keeping things realistic while also demonstrating or role modeling the desired behavior.
    • For example, in the HIV education project Heads or Tails, the community group agreed that in a casual sexual situation, a given character would probably not use a condom. We facilitated a discussion to decide whether we could include condom use in that scene anyway in order to normalize the behavior, and if so how could we make that choice seem realistic. The solution was to show the character’s internal monologue in which he debates whether to use a condom and decides he’s getting tired of worrying about his status and is going to try to do better starting with this moment. In this way, we’ve stayed true to the fact that it’s not something the character might normally do, but we’ve also demonstrated that new, healthy choices can be made.hott2
  • Incorporating health education information as naturally and seamlessly as possible.
    • Unlike more didactic materials that might simply list the details you want the audience member to learn, utilizing characters’ experiences and stories to convey information often requires a more subtle and thoughtful approach. For instance, for many viewers it wouldn’t make sense for a young adult to have an encyclopedic knowledge of HIV prevention information at the ready to share with their friends. We work with community members to identify realistic methods to incorporate that messaging within the story, often asking during the writing process, “How would a character know this?” so we can give context to the knowledge. This can include showing the character doing internet research; having the character flash back to a clinic visit when a clinician was educating them; or giving them a relevant backstory, e.g., their partner is a trained peer educator, or they recently started PrEP and want to tell a friend about it. For a community information outreach project about genomic testing, the community members chose to make the main character a nursing student who has a conversation with her father about what she learned in school. This helps establish her as both a reliable and realistic source of health information.genomics
  • Keeping it short and sweet.
    • User feedback on previous projects suggests that each animated segment shouldn’t last longer than 8 minutes, and ideally should be 5 minutes or less. For context: 8 minutes of scripted audio is roughly 1,500 words, or no more than 3 single spaced pages in a 12-point font. That’s not a lot of time or space to tell a compelling story and include some facts! We work with community members on multiple revisions to pare down our scripts, to break content down into shorter 3-5 minute “episodes” with specific learning objectives, and to develop user interfaces that make the extra content available to the user outside of the main story (e.g., a pop-up box in the margin with links to NLM websites).

 

In the first round of focus groups for our ACIOP project, the community members expressed an interest in having a variety of characters in the story since they felt a lot of existing HIV information was targeted only at the LGBT community. Along with continuing outreach that for YMSM, they suggested including a young woman who may be at risk of HIV due to her partner’s infidelity, and who also may not feel safe negotiating HIV prevention with her partner. The community also wanted an older character who’s perhaps not at risk, but can role model how parents can learn new information and comfortably share it with their children. Finally, since family is very important in many Hispanic communities, it was suggested that at least some of the characters be related.

The creative team then held multiple meetings to discuss those suggestions and to draft stories that would incorporate those preferences, while always keeping in mind the need to keep it realistic, educational, and short! The next blog post on this project will detail the development of the story outline and draft scripts, as well as the community feedback that finalized our stories.

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