Patient-Powered Literature Project
How It's Inherited
Idea sparked by
Sickle Cell 101 in collaboration with
Bold Lips For Sickle Cell and Sickle Cell Warriors, Inc.
Sickle Cell Community Consortium
We are engaging the sickle cell community to
take an active role in creating literature by us, for us.
If you're a sickle cell patient, you have most likely noticed the lack of relevant sickle cell educational literature, if any, in your doctor's office. We've decided to change that.
Sickle Cell 101, in collaboration with Bold Lips For Sickle Cell and Sickle Cell Warriors, Inc. is proud to present the Patient-Powered Sickle Cell Literature Project, a collaborative effort to engage the sickle cell community to create sickle cell literature by us, for us.
This literature will provide those affected by sickle cell a comprehensive understanding of the disorder. This literature will be distributed to health institutions densely-impacted with sickle cell around the U.S.
Content of this easy-read literature will be informative, resourceful, and empowering; and geared towards those affected by sickle cell looking to learn more about the disorder. Content is reflective of important topics the sickle cell community want covered, and believe those living with sickle cell should know.
More about the Sickle Cell Literature Project
Your input is needed!
MD, PhD, Hematologist research review panel. This panel will review content for accuracy.
DEC. 17 & 19, 2015
Sickle Cell Literature Project will be hosting three online focus groups: one on Thursday, Dec. 17th at 6:00PM to 8:00PM EST, two on Saturday, Dec. 19th at 12:00PM to 2:00PM EST and 6:00PM to 8:00PM EST.
NOV. 12, 2015
Sickle Cell Literature Project hosted Development Team online conference call. Specifics of the format of the sickle cell education material have been determined.
SEP. 24, 2015
Sickle Cell Literature Project hosted it's first in-person focus group in Baltimore, MD.
More About Patient-Powered
Sickle Cell Literature Project
This project was developed to provide a platform for the creation of sickle cell educational material designed by sickle cell warriors for sickle cell warriors. The initial inspiration for this project came from sickle cell advocates to address the lack of sickle cell literature in clinics, hospitals and doctor's offices throughout the country. Every aspect, from initial proposal to design and content, is developed by members of the sickle cell community.
This sickle cell education literature will be distributed in areas with a high density of health institutions impacted by sickle cell. The target audience are the under-educated and newly diagnosed. The goal of this literature is to further educate the sickle cell population about the disorder. This literature will include important information and resources about sickle cell disease and trait, and will be placed in wait rooms, lobbies, and patient rooms.
Final content will be reviewed by a panel of medical doctors and scientists for content accuracy.
Patient-Powered means we are creating and developing sickle cell education literature by us, for us. In fact, this project was created as a response to a specific sickle cell warrior's request to have more sickle cell literature within doctors offices.
Sickle Cell 101 jumped at the opportunity to create a project that produced educational literature for the sickle cell community. With the backing of the Sickle Cell Community Consortium, and the efforts of #BoldLipsForSickleCell, this project has truly become a sickle cell community initiative.
In conjunction with the SCDAA Convention, we held our first in-person focus group which determined the audience for this literature, and the content. Soon after, our development team was created and addressed the format this literature would be presented in-- a booklet (less than eight pages) and a postcard.
Our upcoming online focus groups will engage the sickle cell community on a large scale to determine the theme, content, and images used for this educational literature.
Every aspect of this project, from the initial proposal to the design and content, has been developed by individuals with sickle cell and/or their caregivers-- making it by us, for us.
We are providing educational sickle cell literature to providers and health institutions across the nation. The target audience for this literature is the under-educated sickle cell population, and content will be informative, resourceful, and empowering.
Content along with other aspects, have been determined by patients living with sickle cell and/or their caregivers. Content will be reviewed by a panel of MDs, PhDs, and researchers within the field of hematology to ensure content accuracy.
In addition, publishing agency, Fleishman-Hillard is providing consultation for creating this material.
We are currently collecting provider information from patients who feel their health institution would be a good candidate to receive this literature.
The initial distribution of literature will occur during the late March or early April 2016. Literature will be available to re-order from the Sickle Cell Community Consortium, for providers/health institutions that would like to continue receiving literature.
Lakiea Bailey, PhD
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