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Resources

  Organizations are listed in alphabetical order. Being listed is NOT an endorsement. 

National Organizations Focused
on Reducing Medical Error

  • Agency for Healthcare Research and Quality (AHRQ) is part of the U.S. Department of Health & Human Services. AHRQ invests in research on the Nation's health delivery system to understand "how" to make health care safer and improve quality. AHRQ creates materials to teach and train health care systems and professionals to put the results of research into practice. AHRQ generates measures and data used by providers and policymakers.

  • The Coalition to Improve Diagnosis (CID)The Coalition to Improve Diagnosis, made up of many of the most prestigious organizations in the medical and patient community, has been established to bring awareness, attention, and action to the problem of diagnostic error.

  • Consumers Advancing Patient Safety (CAPS) is a consumer-led nonprofit organization formed to be a collective voice for individuals, families and healers who wish to prevent harm in healthcare encounters through partnership and collaboration. CAPS is committed to exploring and contributing the wisdom and experience that consumers can offer to patient safety research, education of both consumers and providers, reporting of bad outcomes and near misses, development and implementation of solutions that can prevent harm, and policy making that will help create healthcare systems that are safe, compassionate and just.

  • Institute for Healthcare Improvement (IHI) is a recognized innovator, convener, and generous leader, a trustworthy partner, and the first place to turn for expertise, help, and encouragement for anyone, anywhere who wants to profoundly change health and health care for the better.

  • National Patient Safety Foundation (NPSF is now part of the Institute for Healthcare Improvement) The National Patient Safety Foundation’s vision is to create a world where patients and those who care for them are free from harm. NPSF partners with patients and families, the health care community, and key stakeholders to advance patient safety and health care workforce safety and disseminate strategies to prevent harm. Committed to a collaborative approach in all that it does, the Foundation offers a portfolio of programs targeted to diverse stakeholders across the health care industry.

  • Patient-Centered Outcomes Research Institute (PCORI) helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community. We seek to fund useful research likely to change practice and improve patient outcomes. We focus on sharing those results with the public. And we work to influence research funded by others to become more useful to patients and other healthcare decision makers.

  • The Society to Improve Diagnosis in Medicine (SIDM) has a vision of a world where no patients are harmed by Diagnostic Error. To accomplish this, SIDM catalyzes and leads change to improve diagnosis and eliminate harm, in partnership with patients, their families, the healthcare community, and every interested stakeholder. SIDM focuses on making accurate and timely diagnosis a strategic priority for all healthcare organizations and participants. They do so via innovative work in four key areas: Research, Education, Practice, and Patient Engagement

Grass-Roots Patient Safety & Advocacy Groups

Tools for Patients & Families

  • The Eight Characteristics of a Symptom This checklist is a great tool to help patients tell their story well, concisely, and with all of the relevant information, so the doctor will consider the right diagnosis and treatment.

  • The Misdiagnosis Poll Please take the misdiagnosis poll and share your story with me. If you would like me to contact you, please let me know.

  • Patient Resources The Society to Improve Diagnosis in Medicine offers many excellent resources for patients who are concerned about getting a correct diagnosis.

  • The Patient's Toolkit for Diagnosis is created for people who are not feeling well or visiting their doctor or nurse with a health concern. Taking an active role in our care can help our doctors and nurses figure out a good “working” diagnosis. The Toolkit has a set of prompts and questions to help you participate and partner with your medical care team – doctors, nurses, and other health care professionals and support staff. Preparing ahead of time for your medical appointment allows you to think about your concerns, symptoms, other important information your doctor/nurse will need from you, and what you want to get out of your conversation with your doctor/nurse.

  • Ask Me 3 (VIDEO) Following a health care plan requires patients to understand spoken and written words, but also how to follow instructions, use numbers, and use reason. By some estimates only 12% of English-speaking adults in the U.S. are proficient in these skills, known as health literacy. This video explains how asking three questions can help patients communicate with their health care providers. 

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