MIB Agents is proud to partner with Smart Patients, an online community for patients and caregivers, to grow our fabulous osteosarcoma community. Patients, 18 and older, and caregivers can join the network at no charge, to share, interact, and learn from each other in a safe and supportive environment. Smart Patients & MIB believe that patients are the most underutilized resource in medicine and that the patient perspective is often overlooked. By partnering with Smart Patients, we are helping create a community of patients and caregivers who can improve care for themselves and others.
What is Smart Patients?
Smart Patients is an online community for patients and families affected by various illnesses. Here you can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life.
What inspired you to start Smart Patients?
Smart Patients represents the 21st-century evolution of online message boards, building on the foundation laid by platforms like the Association of Cancer Online Resources (ACOR). Smart Patients is rooted in the belief that the next major advancement in medicine involves leveraging the collective knowledge of networks of engaged patients.
How is Smart Patients different from other disease-specific online communities (like Facebook?)
The Smart Patients community is about trust and quality. Full stop. Trust and quality are how Smart Patients distinguishes itself from other disease-specific online communities, such as those on Facebook. Smart Patients prioritizes the confidentiality and safety of its members' information. This commitment to privacy ensures that personal health discussions remain secure and private, away from the broader public visibility and data use concerns associated with larger social media platforms like Facebook. Additionally, we don't believe in siloing health conversations. While many members prefer only to discuss issues within their community, it’s easy to reach out to members in other communities to discuss topics that cross disease boundaries, such as caregiving, pain management, or caring for a sick child. The knowledge pool is much bigger than a single community for topics of concern across communities.
Who can join the Smart Patients osteosarcoma community?
Any patient 18 and over and any caregivers can join the Smart Patients Osteosarcoma community. While we recognize that many children are afflicted by osteosarcoma, our platform is only for people over the age of 18. We encourage family members and caregivers to ask questions on behalf of pediatric patients. We rely on partnerships with organizations like MIB Agents to support our younger patients directly.
What type of content is appropriate for a forum like this?
This is a wonderful place to ask questions, seek support, and find a community of people who know exactly what you are going through. There is strength in numbers. Our goal is to provide our patients with a safe place to seek support. We aim to provide them with as many resources and educational opportunities as possible so that they can be their own best advocates along this journey.
For patients and caregivers who have concerns about privacy, can you provide details on if and how content from the Smart Patients community is protected?
At Smart Patients, we prioritize your privacy above all else. Your email address is kept private, never shared with third parties or other members, or used for advertising. Our platform is designed so no one can search for email addresses or member names. You can also send private messages to other members without revealing your email address. We actively monitor conversations to prevent spam and the promotion of unverified treatments and have the ability to remove any inappropriate posts before they can reach a wide audience. Additionally, while posting across different communities is straightforward, it is always moderated to maintain the integrity and safety of our discussions.
The Smart Patients osteosarcoma community discussion is moderated by Robin Martinez. Can you tell us more about Robin's background and experiences that make her uniquely qualified for this role?
Robin (Smart Patients member Robin M) coordinates the Smart Patients online communities. She became a patient advocate when her husband's unexpected cancer diagnosis gave him a prognosis of two or three months. She encountered the right people and information at the right times - mostly online - which helped her husband live a good life for almost ten years with her and their young son. That was the start of her vocation. Robin is at Smart Patients to help others find the information and the care they need. "Together we navigate the entire cancer landscape from diagnosis onward," she says. "Members share medical information, individual experiences, and emotional support while forming amazing friendships. It's incredibly personal and helpful for those who want it to be." Sarcoma families in particular need to share strength and information because of how rare each type of sarcoma is. Everyone here knows how hard a diagnosis of osteosarcoma hits. "We're partnering with MIB Agents because we know coming together is vital for osteosarcoma families," Robin adds. "Smart Patients provides the safe, private space families need to give their best to someone with osteosarcoma. It's a labor of love for all of us."
What 3 words would you use to describe the ethos of the Smart Patients osteosarcoma community?
Compassionate, supportive, determined.
