onevoice Transparency Statement and Frequently Asked Questions - making our onevoice crystal clear | oneSCDvoice

What is a onevoice platform?
Is joining a onevoice community free?
How old do I need to be to use a onevoice platform?
Why do I need to register?
Do you need my real name?
What member information is visible to other community members?
Do you use cookies?
Do you track my IP address?
Do you collect information about members?
What types of information do you collect from members?
Will you share or make my information public?
What type of member information is not shared or made public?
How is the member information you collect shared?
How is my email address supplied during registration used?
Are there any safeguards to ensure that the conversation within onevoice stays on topic?
How safe are you against hacking?
How do you select Trusted Resources?
What are the Working Groups?
What makes the SMART Social Wall smart?
What is the difference between SCDteams and private messages?
Can I belong to more than one SCDteam?
What is myBinder?
How do I narrow down my search for information on oneSCDvoice?
Can I share resources discovered on oneSCDvoice outside of oneSCDvoice?

Through its virtual platform, the onevoice community platform https://www.onescdvoice.com/ provides the groundwork for collaboration among all members of this rare disease community. At rareLife solutions (the creator of onevoice), we believe that sharing and learning from each other’s experiences with rare disease empowers patients, caregivers, advocates, researchers, healthcare professionals, and industry partners to better manage, treat and educate about rare diseases and the lifestyles surrounding them. After all, the first step towards progress begins by starting the conversation (especially when what you’re talking about is rare and something not everyone has heard about)!

We understand that what you share about yourself and your rare disease is important and deserves respect. Just as you’re working with the patients, caregivers, advocates, community managers and other members on the onevoice platform to advance the rare disease experience, we’re working with you to do the same! As collaborators in this shared mission, we want to be completely open with you about how we’re amplifying your voice and the resources in the community using the onevoice platform to improve the rare disease ecosystem.

For more detailed explanations, please read our Terms of Use and Privacy Policy.

What is a onevoice platform?
A onevoice platform provides a forum for knowledge and community growth for all members within a rare disease ecosystem by curating links to high quality disease resources in one space and providing a virtual place to connect.

Is joining a onevoice community free?
Yep, we do not have a membership fee.

How old do I need to be to use a onevoice platform?
You must be at least 13 years old.

Why do I need to register?
While the use of our library of resources, such as rareCurate, doesn’t require registration, the full use of the site’s features does. Having a member account allows you to customize your onevoice experience and allows you to participate in rareCourage conversations, which are only viewable by members.

Do you need my real name?
Nope- you don’t have to share your real name unless you’d like to.

What member information is visible to other community members?
Your username, role, profile page, and rareCourage posts are the only things automatically visible to logged in members. You can choose whether to display other information in your profile.

Do you use cookies?
Yes- we use cookies to personalize your experience, and to understand how visitors move around the platform.

Do you track my IP address?
Your IP address is one of the pieces of data sent by your web browser to our partner, Google Analytics. You can read Google’s policies here (https://www.google.com/policies/privacy/partners/).

Do you collect information about members?
We do collect certain information about members which we use with the intention of improving the understanding and treatments for the rare disease and its community.

What types of information do you collect from members?
We only collect information that a community member voluntarily provides. Examples include biographical information (age, gender, city), photos, and disease info (symptoms, treatment, etc.).

Will you share or make my information public?
As we strive to use our platform to advance this disease ecosystem, we do share certain anonymous information collected with collaborators, people working to enhance onevoice, and most importantly, you and your disease community.

What type of member information is not shared or made public?
Except for some very important exceptions, we will not share a member’s name, password, email address, or mailing address as input during registration. Additionally, we won’t share your date of birth in your profile or your private messages.

How is the member information you collect shared?
Other than reporting adverse events, we do not share the information we collect as an individual data point; it is combined with the same type of information from other community members (in other words, we aggregate the data and strip out information that could be used to identify an individual). Occasionally, we may share anonymized excerpts about the onevoice platform as testimonials or other ways.

How is my email address supplied during registration used?
Simply to stay in contact with you about happenings on the platform, opportunities in your disease space, and any questions or requests you have. You can modify your email preferences in mySettings.

We may also need to get in touch with you in the event of an emergency or to follow up if you mention an adverse event.

Are there any safeguards to ensure that the conversation within onevoice stays on topic?
We provide trained Community Managers for all onevoice platforms who ensure that rareCourage remains a safe, helpful, and welcoming space.

How safe are you against hacking?
We use HIPAA and HI-TECH certified layers of security to protect you and your postings against hackers seeking information you’ve chosen to remain private (although, please understand, anyone can register and see whatever you’ve chosen to show to the community).

How do you select Trusted Resources?

Our research team is guided by our councils of expert physicians, healthcare professionals, advocates, patients and caregivers who represent a wide-variety of perspectives, geographies and personal and professional experiences to inform us as to information resources that are valuable to the community. By selecting a diverse set of experts, we also minimize bias from any particular perspective, institution or experience.

What are the Working Groups?

At oneSCDvoice, you are not alone. There is a team of Sickle Cell leaders guiding oneSCDvoice to make sure it reflects the community’s voice. Working Group members come from all over the United States and have diverse Sickle Cell expertise and backgrounds. The Curation Working Group of Sickle Cell healthcare providers, researchers, and patient support professionals provides feedback on the Trusted Resources curated into oneSCDvoice and the Engagement Work Group of Sickle Cell patients, caregivers, and advocates shares oneSCDvoice with their networks. All Working Group members receive a detailed look at oneSCDvoice and its features prior to the site going live.

What makes the SMART Social Wall smart?

Our related content panel scours the conversation thread and pulls relevant Trusted Resources from across oneSCDvoice so that you can get helpful information instantaneously. Likewise, our Community Managers serve as cybrarians, adding additional related Trusted Resources to the conversation. Find out more about connecting with the Sickle Cell community on the SMART Social Wall here.

What is the difference between SCDteams and private messages?

Both SCDteams and private messages provide a space for conversations not viewable by the entire oneSCDvoice community. In SCDteams, you can spark up a private conversation and share Trusted Resources with up to 20 of your closest friends, family members, support teammates, and fellow SCD peers. Private messages on the other hand are just between you and one other oneSCDvoice member.

Can I belong to more than one SCDteam?

Absolutely. While each member can only start one SCDteam, they can belong to as many as they are invited to join (remember, SCDtams are an invite-only space).

What is myBinder?

This is your personal Sickle Cell filing cabinet. Earmark interesting Trusted Resources, SMART Social Wall posts, or other great content in oneSCDvoice with the “+myBinder” button.

How do I narrow down my search for information on oneSCDvoice?

The global search bar lets you search across all of the Trusted Resources and SMART Social Wall conversations for related information. There is also a search bar at the top of each Trusted Resources category and the SMART Social Wall that allows you to search for content within that section only. Use the advanced filters in education and research and people and places to further narrow your search based on criteria like publication year or location.

Can I share resources discovered on oneSCDvoice outside of oneSCDvoice?

Definitely. We know how important it is to spread the word about helpful Sickle Cell resources. The “share” button allows you to share a piece of content via email, Twitter, Facebook, and in the SMART Social Wall. You must login to view SMART Social Wall posts shared beyond oneSCDvoice.

Questions?
If you have any questions or concerns related to the information practices of this platform, please send us an e-mail at onescdvoice@rarelifesolutions.com, or write to or call us at the address/phone numbers below.

Last Updated: August 9, 2017
rareLife solutions, inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
onescdvoice@rarelifesolutions.com

© 2018 rareLife solutions, inc. All rights reserved.