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Report to NY State Health Foundation for grant to attend 2018 Institute for Healthcare Improvement National Forum Conference, December 11th to 12th, 2018

February 2019

By Ilene Corina, President Pulse Center for Patient Safety Education & Advocacy

We anticipated that the conference’s health equity track would provide ideas that Pulse Center for Patient Safety Education & Advocacy’s community educators could focus on as we examine obstacles to safe care in vulnerable populations.

Over the years we have often brought back information from medical conferences that we believe the public needs to know.  With medical errors now the third leading cause of death in the United States, we need to be looking at the patients’ and their families’ responsibility for their safety in the healthcare system.  Yet patient safety is not something the public learns about except for brief news clippings.

Health equity as described by IHI is the access, treatments, and outcomes when all individuals have a fair opportunity to achieve their full health potential.  At Pulse we work with the general population using the healthcare system and with people belonging to at-risk groups — ethnic and racial minorities, those who have certain specific diseases, and those belonging to any vulnerable or discriminated-against community outside the mainstream — through our Health Care Equality Project. 

UNDERSTANDING HEALTH EQUITY FROM THE PATIENT PERSPECTIVE

By understanding health equity and how it is addressed by healthcare professionals we can educate patients and families about the importance of sharing appropriate information with their clinicians. Often people may feel judged and ashamed when being questioned by their healthcare team. At Pulse we do not tell people how to live or how to be “healthy”, we only share the importance of having an honest and open discussion with their clinicians so they can be treated appropriately.

As bedside advocates we have learned that it is not only people’s Zip code or their upbringing that might determine their life span. That may also be determined by factors in their lives that no one except their closest friends and family may know about.

Consider a patient who has been using illegal drugs or drinks alcohol excessively, or a patient who is abused by a family member at home. Another has a good job in a wealthy neighborhood but has serious asthma and is living in a house with animals, and may be a hoarder. If patients do not fit the model that medical professionals are taught to look for, such information may be missed.  Admissions teams in emergency rooms may not ask the appropriate questions or the patient may not tell the truth to their healthcare team; but the family may intervene with knowledge that only certain categories of people are being addressed. Health equity as described by IHI is related to factors such as racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.

THE NEED FOR PATIENT EDUCATION, OR ARE HEALTHCARE PROFESSIONALS STILL TALKING ONLY TO EACH OTHER?

Much information was shared at the conference that will help justify the need for Pulse to continuing to educate the public. While most public attention is centered on the need for “accountability” when problems arise in healthcare treatment, we at Pulse believe that the focus must be turned to “responsibility”: all patients and their families need to take some responsibility for their own safety. Even at this conference, we observed a tendency to put patients into categories, where their individuality is easily lost. At Pulse we encourage patients and their support teams of family and/or friends to be sure that the patient’s individual needs are met and their concerns are heard.

During the conference we attended a workshop on “The Conversation Project” which is the title of the IHI campaign encouraging families to talk about advance directives. In 2010, when we at Pulse CPSEA learned from our hospice partner that elderly people often see choosing a healthcare proxy as giving up their freedom at the end of their lives, we dedicated a project to developing a brochure with the youth from the Nassau County Youth Board. We began sharing advance directive information as something for anyone age 18 and older and not only for the elderly. The IHI workshop showed that we are on the right track in sharing this information. We will look at their free online resources such as the Starter Kit  to continue and expand this work.

INVOLVING THE PUBLIC IN THE OPIOID CRISIS, HOSPITALS ARE STILL WORKING IN SILOS

We also attended a program on how IHI is moving forward to address the opioid crisis. One plan is to change the wording used in hospitals. Healthcare professionals were asked to sign a pledge to change some of their terminology, such as using substance abuse disorder instead of the term “drug habit”. Instead of using the word “problem,” change to risky or unhealthy behavior. Saying a person is “clean” can be made better by changing it to person in recovery.

This “Change the Narratives Pledge” will be taken to the leadership of a local hospital by a Pulse volunteer (and conference attendee) who works there. He will ask them to sign the pledge. (No one that he knows of from his hospital attended the conference.)

He is also a NY State Paramedic and will suggest that his team use the new language as they treat the community.

Although these examples of the Pledge and the Conversation Project are meant to be used in hospitals by medical professionals, Pulse can share this information with members of the community. For example someone who lives with (or acts as caregiver for) a person with a drug addiction might consider using these updated terms. Someone may want to start the Conversation about advance directives with family members or friends. People often delay naming a healthcare proxy until they are admitted to hospital, but adults as young as eighteen years old can legally do so at any time. The healthcare proxy should be part of the planning for a hospital visit, not done at the hospital.

Since we at Pulse have been providing education on understanding opioids as well as the importance of having a healthcare proxy and additional advance directives, programs such as this conference give us credibility that the information we share is up-to-date and correct.

DISSEMINATING INFORMATION

There is presently no budget for Pulse to disseminate this information, so it will be shared through our newsletter and social media, and parts will be discussed at our upcoming spring patient safety symposium, Patient Safety and Healthcare Equality.

We could not attend every session and may have missed important information. Some sessions were specifically for healthcare institutions (suggested changes to their facilities) and we do not have the opportunity to make changes like that. It is very important that the general public be able to attend conferences such as this one. My interest in patient safety began in part from the death of my son from a preventable medical error, but also it was due to attending a conference such as this in 1999 where I heard healthcare professionals and high-level hospital administrators speak candidly about their own loss of loved ones. At this conference, Maureen Bisognano, Former IHI President and CEO, shared with more than 5,000 attendees the loss of her nephew as a result of his care. This sort of experience continually reinforces the need to educate the public in patient safety practices.

Contact: Ilene Corina at (516) 579-4711 or icorina@pulsecenterforpatientsafety.org

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