Resources to Guide You
Building Community Around Patient Harm
We have built this page to help connect the dots, pulling information together from advocates who have been through harm and healthcare professionals who know how the system works. We understand going through a patient injury can be a very challenging process to navigate. Our global network includes many independent regional and national organizations, and non-profit organizations that provide resources and/or support to those who have experienced an injury due to a medical error.
What is “preventable harm?”
When harm occurs in healthcare, it is generally due to a breakdown in the system which impacts the delivery of care to an individual. If it is determined that the healthcare organization did not have safe systems in place to prevent them from happening in the first place, then it is considered preventable.
What is an example of “preventable harm?”
Let’s use the example of a medication being given. If a patient has never been given medication A before and they experience an adverse event, something bad that has happened, this is not preventable harm. There was no way to know that the patient was going to react negatively. On the other hand, if a patient knows that they are allergic to penicillin and has communicated that with their care team and penicillin is administered, then that is preventable harm – that is a medical error and unsafe care was provided.
Before we talk about where to find support and what steps to take it’s important to realize that there are hospitals that are very far along their patient safety journey and others that are just getting started.
We think it is very important to set expectations around what type of response you might get from the facility where you or your loved one received care.
Unfortunately, there may still be hospitals and healthcare organizations that completely shut down and do not want to talk to you after an injury. They are likely fearful of lawsuits and do not yet understand how a culture of safety can help them save both lives and money. Our mission here at the PSMF is to help support them.
So, if you hit snags in following the tips below please keep this information in mind. Change takes time to settle in but we are urgently pushing for this change so that no other patient has to endure what you and your family have.
Where to Find Support
By Location, By Topic
If you’ve been harmed, you may want to speak to someone who understands what you or your loved one is going through.
It may also benefit you, if you have the resources, to contact an attorney who may be able to help you distinguish between preventable and not preventable harm if the situation that you or a loved one has been through is complicated. It’s not always so black and white as the example given at the top of this page.
Use the map below to see who might be in your local area that you can reach out to for support. You can also search for specialty organizations if you’ve been harmed. For example: if you have suffered from harm from Sepsis, search below for organizations who may provide additional support during this time of need. We will continue to build out this list.
Research has shown that family and friends play a significant role in helping through challenges and difficulties. We are honored to provide you with a list of PSMF Patient Safety Advocates who have volunteered their support and healthcare industry insights to caretakers and those injured by medical harm.
|Caregiver Action Network||Washington, D.C.||USA||Connecticut Ave NW, Washington, DC 20036
|Family Caregiver Alliance||California||USA||
101 Montgomery St Suite #2150, San Francisco, CA 94104
|Canadian Patient Safety Institute||Alberta||Canada||#1400, 10025-102A Avenue,
Edmonton, AB T5J 2Z2
Toll Free: 1.866.421.6933
|Greater National Advocates||Illinois||USA||120 W. Madison Suite 1108
Chicago, IL 60602
|Mothers Against Medical Error||USA||https://www.facebook.com/groups/mamemoms/|
|The Empowered Patient Coalition||California||USA||https://empoweredpatientcoalition.org/|
|MRSA Support Group||USA||https://mrsasupportgroup.org/|
|Peggy Lillis Foundation||USA||https://peggyfoundation.org/|
Medical Error Transparency Plan
|California, North Carolina, Texas, Oregon, and Maryland||USA||https://www.facebook.com/groups/medicalerrortransparencyplan/|
Are we missing a resource? Suggest an organization to add to the resource list above by emailing us here.
What To Do When You’ve Been Harmed
Here are some general tips presented by recognized healthcare improvement safety organizations in the United States.1,2 This approach may not be culturally appropriate globally so please adapt as you see fit.
- Talk to someone immediately.
The closer this individual is to your personal care, the better. Your bedside nurse is a good place to start. Now would also be a good time to talk to an attorney to understand if what has happened is negligence, medical harm or just a complication of your treatment.
- Gather notes.
Write down facts while they’re fresh such as dates, times, names of staff involved, etc. It’s easy to forget to do this simple step. It will be helpful if a formal report is filed.
- Request the complete medical records.
You have the right to request a complete copy of your medical records or obtain these on behalf of a family member. It’s a good idea to do this as a matter of course in any circumstance immediately following discharge from a hospital. And, of course, it becomes particularly useful if there is a concern about harm. Records can often be upwards of hundreds of pages long so don’t be surprised by the length that is delivered.
- Do not wait to report the incident if no one you know is around.
All health care staff members – from physicians to the custodial crew – are there to make your care as safe as possible. It is possible that your health care providers may be unaware of your concern. Reporting errors is very important for health care providers as well as patients and families. Most hospitals employ patient advocates to help with the reporting process.
- Discuss the issue in a respectful, yet assertive manner.
No one wants to make a mistake, so let the provider and/or medical staff know your concerns so he or she can address the problem quickly.
- If the error happens to you, talk to a hospital employee who can investigate and resolve the problem.
Be clear that you expect to hear back about the issue, and that you would like to see something done to address the error. You or a family member should follow up after reporting.
- Formally report the errors with the hospital, if a system exists.
Many hospitals have an established system for reporting errors, such as a suggestion box or a hotline. Use these systems. The problem will not be addressed if it is not reported.
- Follow-up if you haven’t received an answer. (Who Should I Contact?)
If you do not receive an answer during your stay or shortly after being discharged from the hospital, contact the hospital’s customer service, patient advocacy or patient and family relations department. (Note: Each hospital may have different titles for these groups). If you are uncomfortable asking someone directly within the unit you or a family member was in, seek out a neutral party (like a hospital librarian) who can help you identify another group to contact.
- If you haven’t heard back from the facility where the harm happened, you may go above the hospital.
This should be considered the last step if you’ve exhausted all options within the hospital where the harm occurred. You may contact the following, depending on the nature of the harm:
- Your state Department of Health which is where your hospital will likely report certain very serious errors. Find your state’s Department here.
- Your facility’s accrediting body may be able to help. In the United States this will likely be The Joint Commission or DNV-GL Healthcare.
- The media can be a powerful partner helping to bring light to injustices that are occurring in our society. Reach out to your local newspaper or TV station to see if they can help.
- Look up your State Medical Board, file investigation right away with the state.
Using your detailed, timeline figured notes, present this to the state medical board to pursue assisted help. Contact a State Medical Board by using Federation of State Medical Boards resource.
Follow the flowchart below to help you navigate who to speak with at the facility where you’ve been harmed.
- The Leapfrog Group, https://www.hospitalsafetygrade.org/what-is-patient-safety/errors-injuries-accidents-infections
- Institute for Health Care Improvement, IHI, https://www.npsf.org/page/reporting_an_error
- Centers for Medicare & Medicaid Services, CMS, https://www.cms.gov/About-CMS/Agency-Information/OMH/resource-center/index.html