The Consumer Council at Health Care for All in Boston has created a valuable resource, The Assertive Patient — A Guide to Speaking Up When You Are Dissatisfied with a Health Care Experience. This website is designed to assist patients and their families in“speaking up” when things aren’t going well with their healthcare. Just click on the title to visit the site.

For additional support we have researched and accumulated useful web links and listed them below. Full descriptions of each resource can be found by selecting the resource link or by scrolling downward.

When Things Go Wrong: Responding to Adverse Events – Consensus Statement of the Harvard Hospitals

Prepared by physicians, nurses, risk managers, and patients from the Harvard teaching hospitals, the document attempts to summarize the current thinking about the best practices to follow when a patient suffers injury from medical treatment. Its objectives are to provide a deeper understanding of the issues involved to help hospitals and caregivers develop more effective policies for managing patients and caregivers following injury. The concepts and principles are supported by the Harvard teaching hospitals.

Click here to download a free PDF version
Published with permission

Agency for Healthcare Research and Quality

Public online national physician database whose direct source of data is from the state government licensing board. It is free of charge to the public. DocFinder contains the licensing background and disciplinary information of physicians and other health care practitioners with detailed Medical Malpractice, Hospital Discipline and Criminal Conviction information from Physician Profile Law states.

www.ahrq.gov

Consumer Health Information Corporation

This site is focused on patient education and offers extensive resources, in the form of educational programs, services and fact sheets for consumers, health care providers, and pharmaceutical companies. Although not all information is patient safety-specific, there is a wide range of valuable information.

www.consumer-health.com

Medically Induced Trauma Support Services (MITSS)

This non-profit organization supports, educates, trains, and offers assistance to individuals affected by medically induced trauma. Resources include related links and contact information.

www.mitss.org

Partnership for Healthcare Excellence

The Massachusetts-based Partnership for Healthcare Excellence is the first statewide effort in the nation to focus specifically on patients – helping them to play a greater role in improving the quality of their health care.  The goals of the Partnership are to educate the public about variation in health care quality and to provide consumers with information and tools to improve the quality of their own care.  The Partnership seeks to motivate consumers to advocate for overall health system change that improve quality of care.  MITSS is a member of a broad coalition of organizations supporting the Partnership.  For information, visit www.partnershipforhealthcare.org.

P.U.L.S.E. (Persons United Limiting Substandards and Errors in Healthcare)

This site offers information on the national (and local chapters of) PULSE, a consumer-focused organization geared towards education and support. Resources include a chat room, personal stories, related links for patients’ rights, some state-specific resources, as well as physician profiles.

www.pulseamerica.org

Voice4Patients.com

The site offers informative on-line resources for the victims of medical error, surviving family members and patient advocates. Resources are included to enable consumers to become active partners in their own health care; thus reducing the chance of experiencing an error. Resources include information on legislation, patient safety reports, patient stories, resources for healing following an error, patient safety events and disease-specific information.

voice4patients@aol.com

American Hospital Association

The American Hospital Association (AHA) is the national organization that represents and serves all types of hospitals, health care networks, and their patients and communities.

www.aha.org

American Medical Association

The AMA’s envisioned future is to be an essential part of the professional life of every physician and an essential force for progress in improving the nation’s health.

www.ama-assn.org

Center for Medical Consumers

Non-profit advocacy organization active in both statewide and national efforts to improve the quality of health care. We are entirely supported by private donations, newsletter subscriptions, and the generous support of the Judson Memorial Church

www.medicalconsumers.org

Compassionate Friends

The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. The Compassionate Friends is a national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings.

www.compassionatefriends.org

Institute for Family-Centered Care

The Institute for Family-Centered Care, a non-profit organization, provides leadership to advance the understanding and practice of patient- and family-centered care. By promoting collaborative, empowering relationships between providers and consumers, the Institute facilitates patient- and family-centered change in all settings where individuals and families receive care and support. Guidance for creating patient and family advisory councils, supporting family participation on committees and task forces (e.g., patient safety, pain management, quality improvement, and patient and family education), collaborative design planning, and involving patients and families in staff orientation and the education of students and trainees is available from the Institute.

www.familycenteredcare.org

Patient Advocate Foundation

Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

www.patientadvocate.org

Joint Commission International Center For Patient Safety

An independent, not-for-profit organization, the Joint Commission is the nation’s predominant standards-setting and accrediting body in health care.

www.jcipatientsafety.org

Society of Critical Care Medicine

The mission of the Society of Critical Care Medicine is to secure the highest quality care for all critically ill and injured patients.

www.sccm.org

Families USA

Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.

www.familiesusa.org

The Patient and Family Resource Center

The Patient and Family Resource Center (PFRC) provides medical and consumer health information for the New York University Medical Center Community, supports informed health care decisions and promotes wellness. Our services are free and confidential.

http://pfrc.med.nyu.edu

Centers for Disease Control and Prevention

The Centers for Disease Control and Prevention (CDC) is one of the 13 major operating components of the Department of Health and Human Services (HHS), which is the principal agency in the United States government for protecting the health and safety of all Americans and for providing essential human services, especially for those people who are least able to help themselves.

www.cdc.gov

Medscape

Medscape offers specialists, primary care physicians, and other health professionals the Web’s most robust and integrated medical information and educational tools.

www.medscape.com

Medline Plus Health Information

MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations.

www.medlineplus.gov

Consumers Advancing Patient Safety (CAPS)

CAPS envisions a partnership between consumers and providers to create global healthcare systems that are safe, compassionate and just.

www.patientsafety.org

National Family Caregivers Association

The National Family Caregivers Association (NFCA) supports, empowers, educates, and speaks up for the more than 50 million Americans who care for a chronically ill, aged, or disabled loved one.

www.thefamilycaregiver.org

Health Care Choices

a New York not-for-profit corporation dedicated to educating the public about the nation’s health care system.

www.healthcarechoices.org

Institute for Safe Medication Practices

The Institute for Safe Medication Practices (ISMP), based in suburban Philadelphia, is the nation’s only 501c (3) nonprofit organization devoted entirely to medication error prevention and safe medication use

www.ismp.org

Institute for Healthcare Improvement

The Institute for Healthcare Improvement (IHI) is a non-for-profit organization leading the improvement of health care throughout the world.

www.ihi.org/ihi

National Association for Healthcare Quality (NAHQ)

The nation’s leading organization for healthcare quality professionals, its goal is to promote the continuous improvement of quality in healthcare by providing educational and development opportunities for professionals at all management levels and within all healthcare settings.

www.nahq.org

Patient Safety Institute

PSI is a non-profit 501(c)(3) membership organization governed by leading consumer, physician and hospital advocates. We are working to ensure patients receive care from a healthcare provider who has access (with permission) to their Personal Health Record (regardless of the source).

www.ptsafety.org

National Quality Forum

The National Quality Forum is a private, not-for-profit membership organization created to develop and implement a national strategy for healthcare quality measurement and reporting.

www.qualityforum.org

National Center For Patient Safety

The NCPS was established in 1999 to develop and nurture a culture of safety throughout the Veterans Health Administration.

www.patientsafety.gov

The LeapFrog Group

The Leapfrog Group is an initiative driven by organizations that buy health care who are working to initiate breakthrough improvements in the safety, quality and affordability of healthcare for Americans. It is a voluntary program aimed at mobilizing employer purchasing power to alert America’s health industry that big leaps in health care safety, quality and customer value will be recognized and rewarded.

www.leapfroggroup.org

National Empowerment Center

The mission of the National Empowerment Center Inc. is to carry a message of recovery, empowerment, hope and healing to people who have been labeled with mental illness.

www.power2u.org

World Health Organization

WHO’s objective, as set out in its Constitution, is the attainment by all peoples of the highest possible level of health. Health is defined in WHO’s Constitution as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

www.who.int/en

Ask a Patient

Medicine Ratings and Health Care Opinions

www.askapatient.com

Hospice Patients Alliance

The Hospice Patients Alliance was formed in August of 1998 as a nonprofit charitable organization and is a 501(c)(3) corporation serving the general public throughout the United States. We were formed by experienced hospice staff and other health care professionals who saw that hospices were not always complying with the standards of care, and in fact, were in some cases, violating the rights of patients and families and exploiting them for financial gain, or not providing adequate care to control pain or other distressing symptoms during the end of life period.

www.hospicepatients.org

Health Grades

HealthGrades (Nasdaq:HGRD) is the leading healthcare ratings organization, providing ratings and profiles of hospitals, nursing homes and physicians to consumers, corporations, health plans and hospitals. Millions of consumers and hundreds of the nation’s largest employers, health plans and hospitals rely on HealthGrades’ independent ratings to make healthcare decisions based on the quality of care.

www.healthgrades.com

American Health Information Management Association

AHIMA is the premier association of health information management (HIM) professionals. AHIMA’s 50,000 members are dedicated to the effective management of personal health information needed to deliver quality healthcare to the public. Founded in 1928 to improve the quality of medical records, AHIMA is committed to advancing the HIM profession in an increasingly electronic and global environment through leadership in advocacy, education, certification, and lifelong learning.

www.ahima.org

Association of Trial Lawyers of America

As the world’s largest trial bar, ATLA promotes justice and fairness for injured persons, safeguards victims’ rights–particularly the right to trial by jury–and strengthens the civil justice system through education and disclosure of information critical to public health and safety.

www.atla.org

Citizens For Health

Citizens for Health is the national nonprofit consumer advocacy group working to broaden health care options, create an integrative health system based on wellness, and advance the freedom to make health choices.

www.citizens.org

National Institutes of Health (NIH)

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research. Helping to lead the way toward important medical discoveries that improve people’s health and save lives, NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases.

www.health.nih.gov

Stophospitalinfections.org

A grassroot campaign to stop hospital acquired infections run by consumersunion.org

www.stophopsitalinfections.org