Community health center (CHC)/federally qualified health center (FQHC) leaders and staff have valuable experiences with caring and advocating for patients. CHCs/FQHCs overcome many hardships patients face in healthcare.

The hardships some people face receiving quality care sometimes feel like the result of racism in healthcare systems (e.g., difficulty getting health care covered or paid for, trouble getting needed medications, difficulty getting care from specialists, having poor outcomes from procedures or more serious events).

The stories of hardships experienced in healthcare are not always heard. The purpose of this project is to share these stories and learn from them to improve healthcare policy. This project is particularly interested in stories about difficulties with quality health care for Black or African American patients.

People who identify as Black or African American may be more likely to experience conditions like diabetes or high blood pressure due to stress, or have other poor experiences related to unfair treatment in healthcare. This project focuses on understanding treatment experiences to inform policy to improve healthcare.

Anyone 18 years or older who provides care, receives care, or advocates for patients in CHCs or FQHCs is welcome to share stories of their experiences, or the experiences of someone for whom they provide care.

The stories of hardships experienced in healthcare are not always heard. Your story will be used to improve healthcare for Black or African Americans and others with experiences like yours.

Yes, please do share your story even if it happened many years ago.

Please do share as many stories as you would like to share.

Participation is completely voluntary. You do not have to participate. You can choose to stop answering questions about your story at any time. You are free to skip questions or answer “prefer not to say” for any questions. Completing the questions implies you agreed to participate and consent to have your stories shared with others.

Deciding not to participate won’t affect professional standing or evaluations in your program or department, nor will it affect medical care you receive now or in the future, or any benefits you receive now or have the right to receive.

This questionnaire is completely anonymous. All identifiable information will be removed from your stories. Only the themes and summaries will be shared with policy makers, researchers, and the public.

We ask you to share stories of your experiences in healthcare, particularly, times when you felt you were not treated with respect or dignity or times you did not have a positive experience or good health outcome. We also ask what state in which you receive care (e.g., Mississippi, Massachusetts, other state) and what your role is within CHCs or FQHCs(e.g., patient, clinician, administrator, community health worker, etc.). We will also ask if you could share any potential solution to the hardship you experienced.

We anticipate sharing stories may take 10-15 minutes.

Your health story, and the stories shared by others, will help us learn more about the hardships Black and African American patients face and teach us ways to overcome these hardships. We will look for trends and themes in people’s answers. This de-identified information and selected quotes will inform policy makers, researchers, and the public of structural racism within healthcare.

Your de-identified information may be used or shared with other researchers or policy makers without your additional informed consent. The information collected will not be used in clinical care.

Here are some resources you may find helpful:

• National Resources:
  • Call or text “988” to connect to the National Suicide and Crisis Lifeline
  • Text “HOME” to 741741 for English and “AYUDA” to 741741 for Spanish support
  • National Alliance on Mental Illness (NAMI)
  • NAMI WarmLine Directory
• Local Massachusetts resources:
  • William James INTERFACE Referral Service
  • Mental health crisis support | Mass.gov
  • Massachusetts Substance Use Helpline (helplinema.org)
• Local Mississippi resources
  • Searchable State & Local Resources – NAMI Mississippi (namims.org)
  • Crisis Stabilization Units – Mental Health Mississippi (mentalhealthms.com)

Yes, all responses will be stored on secure, password protected, encrypted Mass General Brigham servers. Only approved study members will have access to your anonymous responses.

If you have any other questions, please feel free to email the project director, Dr. Cheryl Clark at ourhealthstories@mgb.org

If you’d like to speak to someone not involved in this project about your rights as a project subject, or any concerns or complaints you may have about the project, contact the Mass General Brigham Institutional Review Board at (857) 282-1900.