For Patients: 11 take homes from the #uniteforsafecare virtual event

By: Ariana Longley, Chief Operating Officer, Patient Safety Movement Foundation

The World Health Organization has designated September 17 as World Patient Safety Day — a day, every year, to raise awareness of healthcare safety and reiterate its importance.

This year we hosted a four-hour virtual event as part of their #uniteforsafecare public awareness campaign. We organized the event to bring the public into the fold as well as unite patients, advocates, health workers and leaders together globally — working to ensure patient and health worker safety internationally.

If you missed the event, you can check it out here.

Here are 11 takeaways for the public, patients and their families from the #uniteforsafecare virtual event.

1. Recognize that the system isn’t perfect.  As Christine Pontus, Associate Director of Massachusetts Nurses Association, stated at the event, “Safety has a lot to do with an ability to do the job.  Nurses cannot do their patient care work being short-staffed.  That was occurring before COVID-19 … we were in crisis prior to [the COVID-19 pandemic].  Now, we are asked as healthcare workers to … go into a warzone.”

COVID-19 has exposed and even exacerbated existing problems with health care.  Unfortunately, according to a recent survey conducted by PSMF, 79% of Americans don’t know that patient safety is compromised every day in healthcare — even before the pandemic.  As Stix, a California-based rapper who spoke at the virtual event, mentioned, medical errors are the third largest cause of death, and the disparity for minorities receiving healthcare is “insurmountable.”

The good news here is that knowledge is power.  Understanding the inherent flaws of the system can empower you to take control of your own health care.

2. Stay engaged in your own health care process.  Participate in your own care and be an active partner. Persons and families can participate in care by asking why, what, and how? Be inquisitive. Your health care providers are trying to use their expertise to help you, and you have the honor of making sure that what’s happening is working for you.  Your job isn’t to follow directions, but to actively engage in your own care.

The single most important thing you can do as a patient to ensure the best quality of health care is to develop a sense of health agency, which is the patient’s ability to interpret and contextualize their own personal health information.  Why is this important?  In a strained medical care environment, with health care providers struggling to provide adequate care, the most important thing you can do is pay attention.  This includes things such as checking your prescriptions, keeping track of your medical records, asking questions when you are confused about something your doctor said, even asking the local pharmacist if you have questions about your medication.

Oftentimes, doctors and nurses can be stressed out or pressed for time.  Don’t be deterred by this, though, and insist on clear, crisp answers to your questions.  A temporary inconvenience to your healthcare provider is much better than an oversight or medical error that may cause them significant stress, anxiety, and other problems.

3. Recognize that your voice matters. You are the keeper of your care, and if you see a problem in your care, you should report it to the facility.  You won’t always see action, but healthcare systems pay attention to what their patients think, and they can’t fix what they don’t know about.

4. Don’t be intimidated.  Speak up and point out things that can be improved, even if it’s an awkward conversation.  Think of yourself as the driver of a car — you are not guaranteed a safe experience – so you have to be careful. When you think of a question, write it down and ask your healthcare provider.  Stay on it, even when the doctor is busy — that’s the most important time.  Always have an advocate — someone who can ask questions for you and be your “wingman.”

5. Get a second opinion. Second opinions force good medicine, and stronger diagnoses; they challenge doctors to think harder on difficult cases.  Second opinions can also be great teaching opportunities for clinicians.  

6. Don’t be afraid to “shop around” for healthcare.  Shop around and talk to different doctors.  Choose one you can communicate easily with about your health problems and whose team you can trust to provide good care.  Think about this: in healthcare, in no other situation do we buy stuff without asking the price or checking out the product.  In healthcare, your life depends on it.

7. Follow your gut.  At the PSMF virtual event, participants heard story after story of medical staff making errors, and failing to listen to patients and their families when something began to seem “off.”  Sadly, this communication breakdown led to loss of life in many situations.  Filmmaker Steve Burrows’ mother died from complications due to medical error — the topic of his documentary “Bleed Out.”  He advises patients to “follow your gut — the gut does not lie.”

8. Double-check everything.  Pay attention to the care your are receiving.  This includes the medications being ordered for you and diagnostic tests.  Make sure they are intended for you.  Modern Electronic Health Records Systems have streamlined patient care in many ways, but there are still many shortcomings.  It’s possible for a doctor to order medical procedures for someone else by accident, or that you could receive the wrong prescription or tests.  Also, carefully review all the information in your medical records.  Check the basic descriptive information like height, weight, age, and even name, and all medical info.

9. Minority communities must be cognizant of the social disparities in patient care.  The COVID-19 pandemic and social issues occurring in the United States and world highlight endemic and systemic bias.  These social disparities must be addressed for true patient-centered care.  There are things you can do to mitigate these issues.  Advocate for yourself — early and often — and don’t make assumptions.  Don’t rely on Facebook or Twitter for health information — as Daria Terrell, MD, of St. Bernard Hospital stated at the virtual event, “If you’re trying to find credible information, you want to find credible sources that are based on credible facts,” such as information from the CDC website.  Gloria Arellanes, a Tongva elder, discussed health issues on Native American reservations due to poverty and lack of facilities at the PSMF event — even things like a lack of running water.  “You have rights — please use your rights and speak up,” Arellanes says.

10. Keep in mind that health workers are not to blame, the system is to blame.  A PSMF poll found that the general public wants to point a finger when something goes wrong. They often blame doctors or nurses, when really it’s the broken system.  We love our health workers, and it’s clear that the system in which they’re operating is broken. So when something goes wrong, we need to support them. Healthcare provider burnout and suicide is real and a result of operating in this flawed system.

11. Remember that we’re all in this together.  Maintaining good communication with your healthcare providers goes a long way in ensuring patient safety.  Remember that sometimes, patients can provide more insight into the details of their care and how they are feeling than their health care providers.  The onus is on the patient to recognize the limitations of the healthcare system and relentlessly pursue information for the best outcomes.  As Former President Bill Clinton mentioned at the PSMF virtual event, “flawed systems, technology, and human error” are all challenges we are facing in the healthcare system.  “We need an honest, productive conversation about ways to make healthcare safer for everyone.”

While healthcare providers should work to improve patient safety, the truth is that the journey to ZERO preventable deaths in health care is not just the responsibility of just one person.  It involves every single individual in the hospital, including patients and their families.  Patients should learn to ask questions, trust their gut, and remember that they have a voice in their own health care.

Just as careless mistakes can be disastrous for patients, they can also ruin the morale of health care workers and cause stress, anxiety, and serious problems.  That’s why we all need to raise awareness of preventable medical errors and work towards ZERO.