The Dash Alliance has recently announced the rebrand of MobiMedQr to My Rare ID.
“In 2017, we launched MobiMedQr with a small group of rare disease patients and have slowly grown our presence over the last five years. We are thrilled to be expanding our footprint to make My Rare ID more accessible to the wider rare disease community,” said Eden Lord, Founder & CEO.
My Rare ID is a digital platform that hosts digital health profiles for rare disease patients, utilizing a unique suite of tools to not only provide crucial medical details in an emergency, but to educate first responders and treating physicians on the nuances of a particular diagnosis while following established treatment protocols tailored to the patient.
Amplifying the Patient Voice in Emergencies
“As we continue to grow, we are working with patient groups, physicians, hospital systems, EMS services and agencies, and even insurance companies to not only raise awareness for the rare disease community, but to draw attention to the need for customized patient treatments,” said Lord. “My Rare ID not only acts as the patient voice during emergencies, but it works to educate medical providers about the nuances of a particular diagnosis using instantly accessible information from recognized medical sources.”
Avoiding Medical Errors & Expediting Time to Treatment
Medical errors are frequently cited as a leading cause of death, with the frequency of errors in emergency care surpassing all other healthcare settings. Whether diagnostic or a medication error, it is clear that timely and accurate treatment is needed for patients experiencing a medical crisis in conjuction with a rare disease diagnosis.
“The most frequently identified type of error (45% of cases) was problems with information processing, followed by problems with verifying information that was gathered (31%). Inadequate knowledge problems (6%) and inadequate information gathering (18%) occurred relatively infrequently. Misjudging how significant a finding was and prematurely deciding on an incorrect diagnosis were the individual errors that occurred most frequently (13% each).” (De Gruyter, 2018)
My Rare ID not only communicates current diagnoses and treatments, but it identifies a patient’s care team and preferred treatment protocols, potentially expediting treatment and improving outcomes.
More Than an Emergency Treatment Tool
My Rare ID is designed to be more than an emergency tool. “We often find that My Rare ID is used in everyday life,” said Lord. “Many members have copies of their ID’s at school with the nurse, with their children’s sports coaches, and on the fridge for babysitters and caregivers. We’re trying to make that emergency medical information is available to anyone who would be part of the patient’s life.”
Ensuring Equitable Access to Care
“We believe that all patients – regardless of race, ethnicity, or gender – deserve access to quality medical care. With a My Rare ID profile, we seek to empower patients with a tool that allows them to share accurate, validated details about their current diagnoses and care,” said Lord. “Our ultimate goal is to not only make sure that rare disease patients receive the appropriate care in a timely fashion, but to level the playing field when it comes to accessibility. My Rare ID is an important tool for patients to not only share current information, but background info on their Family History and other key details that could prevent a misdiagnosis.”
At My Rare ID, privacy is key. “Our platform is secure. It was an easy choice to partner with FlowCode to create accessible read-only patient records,” said Jeff Lord, CTO. “Our cloud servers use Secure Socket Layer (SSL) encryption to secure member profiles. Profiles are also protected by a 4 digit PIN code (of your choosing) for access to a read-only copy of your information for EMS or others to view.” Lord continued, “the caregiver and/or patient has full rights to keep the profile updated through a private login link.”
Patients Own Their Profile Data
My Rare ID is a digital hosting platform – patients ultimately own the data they upload to the platform and have 100% control over the content shared. Patient data is never sold. For patients who wish to share their deidentified information for research purposes, you’ll know exactly how your data is used prior to sharing.
My Rare ID seeks to not only support patients in times of medical crisis, but through the work of leading rare disease non-profit organizations. That’s why we offer non-profits and patients the opportunity to join our Patient Partner and Non-Profit Partner Programs.
*Participating partners receive a portion of proceeds from all sales using their unique link.
Benjamin H. Schnapp, Jean E. Sun, Jeremy L. Kim, Reuben J. Strayer, Kaushal H. Shah. Cognitive error in an academic emergency department. Diagnosis, 2018; 0 (0) DOI: 10.1515/dx-2018-0011
Sabin J, Nosek BA, Greenwald A, Rivara FP. Physicians’ implicit and explicit attitudes about race by MD race, ethnicity, and gender. J Health Care Poor Underserved. 2009;20(3):896-913. doi:10.1353/hpu.0.0185