PULSE of NY

PULSE of NY Supports New Standards

PULSE of NY Supports WPATH New Standards of Care

(Wantagh, Long Island October 4, 2011) PULSE of NY, a Long Island grassroots patient safety organization applauds the new standards of care for transsexual patients.

PULSE, along with Long Island transsexual men and women, rejoice at the release last week of Transgender Health standards by the World Professional Association for Transgender Health (WPATH). These newest Standards of Care affect the treatment of patients who are Transsexual, Transgender, and Gender Nonconforming.

Some of the things which have changed are:

Psychotherapy is no longer a requirement to receive hormones and surgery, although it is still suggested.
There are now different standards for surgery, as well. For example, a transgender man who wants a hysterectomy no longer has to live one year as a male in order to receive the surgery. Likewise, a transgender woman who wants her testicles removed does not have to live one year as a female.

Ilene Corina, President of PULSE of NY spent the last 2 years following Long Island Transexual patients through their transitional surgeries as well as day-to-day medical treatments. The finding was that medical care is difficult for people who do not want to recognize their body. “There is very little, if any sensitivity training for medical professionals who work with trangender patients” explains Ilene Corina who just completed a white paper on the subject as a continuation of her fellowship with the American Hospital Association / National Patient Safety Foundation Patient Safety Leadership Training. “Not being treated appropriately leads to patients who don’t get appropriate care.”

“The new WPATH Standards of Care, usher in a breath of fresh air and validation to thousands of transgender and gender variant individuals who know who they are and want nothing more than to self-actualize” says Donna B. Riley, LCSW, PhD Candidate who worked on the project with Corina.

For additional information, call (516) 579-4711.

Patient Safety and Young People

Ilene Corina, President PULSE of NY addresses young people at

Pride for Youth Coffee House, Bellmore NY.

Pride for Youth is an advocacy service for lesbian, gay, bisexual and transgender (LGBT) youth under the age of 21. On November 11, 2011 Ilene Corina spoke at their coffee house to approximately 50 young people and shared stories about transgender people who avoid getting much needed healthcare because of either their embarrassment of their body, insecurity about how they may be perceived or because of past experiences of insensitivity to them by medical professionals.

“Medical professionals are not trained in the specific needs of patient centered care or compassionate care to their transgender patients” Corina explained to the group. “It’s up to each of you to advocate for each other and help each other through the healthcare system and make sure your needs are met.”

Corina’s presentation was met with questions about how they can get involved more to learn about advocating for each other. The Glossary of Transgender Terms recently published by the Long Island Patient Safety Advisory Council was distributed so young people can share them with their medical professionals and feel that they are doing something to help educate the profession.

Note: A new field guide from the Joint Commission urges US hospitals to create a more welcoming, safe, and inclusive environment that contributes to improved health care quality for lesbian, gay, bisexual, and transgender (LGBT) patients and their families.

National and Local Leaders Speak on Health Disparities and Diversity

National and Local Leaders Speak on Health Disparities and Diversity

September 25, 2011

By Cora Lee Picone

PULSE of NY

(September 30, 2011) This past Sunday members of the community gathered for an informal discussion about Patient Centered Care at the South Nassau Unitarian Universalist Congregation in Freeport, NY. PULSE of NY welcomed Amy Wilson-Stronks and Dr. Terri Ann Parnell to lead the discussion. Amy formerly worked for the Joint Commission and is now an independent advocate and consultant. Dr. Parnell has a background in nursing and is now the Associate Chief Diversity and Inclusion Officer for the North Shore-LIJ Health System in the Office of Diversity, Inclusion & Health Literacy.

The first topic of discussion was the existence of multiple factions of health advocacy. Amy explained that there are three main focus points: language access and culture centered care, health literacy, and physical communication barriers. Language access advocates focus on deaf patients and English language learners. Health literacy, which is defined as an individual’s ability to understand and use health information, is an issue has been embraced by healthcare providers and policy makers. Unfortunately, language access has not received the same support. Physical communication barriers, which often require the assistance of speech-pathologists, receive the least amount of attention.

The main topic of the session was how to achieve patient centered care. Dr. Parnell reminded us that the goal is partnership which cannot be attained without effective communication. We need to encourage patients to speak up and train service providers to feel comfortable asking questions. The most significant impediment is shame or embarrassment which keeps patients from asking questions and prevents doctors from admitting that they are uninformed about a specific topic for fear of losing the respect of the patient.

Amy asked the audience if anyone had made complaints to a health care provider in the past. Many audience members brought up problems they had encountered while trying to do so: medical professionals’ refusal to engage in dialogue, not knowing how to confront the issue, and the lack of access to professionals.

Amy asked the audience “Does everyone know how to engage a provider with a question? Do you know who to call?” Many participants were unsure. One person shared a past experience that involved significant communication roadblock. She tried to contact a healthcare provider in order to obtain an answer to a question. She could not reach an actual human being and was forced to navigate the elaborate answering machine system. Even emailing was unhelpful because it took a week to receive a response. This story demonstrates why it can be so difficult to make a complaint: even communication about non-contentious issues is arduous.

Amy informed the audience that any institution that is accredited by the Joint Commission has a complaint hotline and Dr. Parnell reminded everyone that they can always take a hospital complaint to the administration department. Both Dr. Parnell and Amy encouraged the audience to be persistent about complaints. Many people believe that the problem is indifference on the provider’s part. In most cases, providers are simply overwhelmed and short on time. Dr. Parnell mentioned opposite side of the issue which is that many members of medical staff do not speak up when they believe something was done incorrectly or mishandled because they fear retribution.

Following a comment made by an audience member, the conversation turned to the issue of language access. A woman shared an experience she had when she realized that a fellow patient needed a translator but did not ask for one and instead pretended that she understood a doctor’s explanation. Many patients who require translators are too intimidated to ask for one or simply don’t know that they have the right to request one. An interpreter in the audience confirmed this and added that even though the Joint Commission requires providers to make use of interpreter’s services, they frequently don’t. There is no way for the Joint Commission to enforce this regulation.

Amy responded that the Joint Commission is aware of this because they completed a national study on hospital compliance with translation services and the results were “abysmal”. She pointed out that the greatest barrier is often prejudice; reminding the group that discrimination exists in healthcare. Amy said that it will be a long time before language access is truly accepted due to the common attitude that patients “should just learn English.” Healthcare providers need to be educated on cultural competency and taught how to ask the appropriate questions. An audience member who works in healthcare mentioned that many providers are unaware of their own privilege which protects them from experiencing discrimination and prejudice thus leading them to believe that discrimination does not occur in their facility. He shared that he benefitted tremendously from a workshop given by the local org, Erase Racism and encouraged others to take advantage of that resource.

Amy then shared a personal story to demonstrate that everyone can face communication barriers in healthcare regardless of social class, education level, and language abilities. Her father, even as a practicing physician, faced communication barriers and difficulties while hospitalized. She reminded us that hospitals are required to allow patients to have a supporter with them, someone who can speak up for them when they are unable to do so themselves. She clarified that a supporter is not the same as an interpreter and that patients in need of language services are allowed to have both.

Another topic that was addressed was role of the interpreter. Interpreters try to be neutral but when they get to know patients, they often overstep and take on the role of advocacy. Both Dr. Parnell and Amy agreed that this is inappropriate. Dr. Parnell stated that interpreters should be unbiased. Their role is not to infer. Amy said that while combing advocacy and interpretation is not a good idea, it is always appropriate to mention concerns or complaints to an interpreter because as an employee they are likely to know who is capable of addressing the issue. Amy and Dr. Parnell also mentioned that interpreters can report violations or problems anonymously to the Joint Commission via letter. Ilene volunteered to deliver such letters to the Commission personally if the interpreters were concerned about doing so.

Amy stated that it is important to repeat personal accounts of communication mishaps or barriers as well as complaints. Health care providers are frequently moved by stories but often believe that it doesn’t happen in the facility that employs them. Ilene Corina, President of PULSE of NY, brought up an important method of avoiding miscommunication called the Teach Back Method. Doctors are encouraged to ask a patient to repeat back instructions of explanations allowing them to determine whether or not the patient actually understood what was said. Dr. Parnell agreed that this method is useful and important because many patients feel overwhelmed by the amount of information received before they are discharged. In her view, a pressing issue with the Teach Back Method is training doctors and staff to present the questions a relaxed manner so that the patient doesn’t feel like they are being quizzed.

A member of the Nassau County legislature also attended the event. As a PULSE supporter, David Denenberg urged the audience to get involved with the local government by contacting representatives and the county Board of Health. The changes we want to see have a greater chance of being achieved if our local government aware of our wishes and joins forces with grassroots organizations like PULSE.

The personal anecdotes shared by audience members demonstrate that there is still a long way to go before patient centered care is achieved. It is essential that community members continue to engage professionals and providers in dialogues. Events like this encourage such dialogues. PULSE plans to continuing hosting similar events with the hope that they will equip patients with the confidence and knowledge seek a respectful dialogue with their healthcare provider.

For more information contact PULSE of NY (516) 579-4711

PULSE of NY Fundraiser a Huge Success!

Board member John Bilello
sells chances at the 50/50

The PULSE of NY fundraiser; “Patient Safety Isn’t Funny but Laughter is the Best Medicine” was a huge success at the Brokerage Comedy Club with almost 100 attendees showing up to hear 5 local comedians. Many guests left their troubles at the door as the sound of friend’s, colleague’s, and families’ laughter filled the lounge. Following the 90 minute show many guests expressed their satisfaction by stating “I hope you do this every year”. The night ended on a high note when nineteen raffle baskets and fourteen gift cards were given out followed by the 50/50 drawing after the show. In light of this success, PULSE of New York hopes to establish Comedy Night as a yearly event.

Board member Charles Cal
thanks everyone for coming

Board member Leslie Farrington
sells raffle tickets

To see more photos of the evening visit PULSEofNY Slide Show

Advocate Training

Rick Popovic of enhancedCare MD
and Ilene Corina

(Wantagh NY, September 2011) Ilene Corina, President PULSE of NY and Patient Safety Advocate held a Family Centered Patient Advocacy training at enhancedCareMD in Rochester NY on August 30; just in time for the start of the much anticipated program servicing the people of Rochester and surrounding areas. EnhancedCareMD will offer better patient / provider relationships through phone calls, e-mails and more timely appointments.

The nurses and community patient’s advocate who would be called upon through this elite service, were taught about patient safety and areas where hospitals may fall short of safe care. Falls, infections, health literacy, medication and surgery safety were just some of the topics addressed. Difficult role playing scenarios often stumped participants and encouraged discussion about the importance of communication as well as past experiences and concerns.

Rick Popovic, Executive Vice President of enhancedCareMD played the part of an aggressive doctor speaking only to the advocate and rushing her to sign a consent form. The gentle nurse of 32 years, who played the advocate, struggled with the words to stand up to the doctor. She has always been taught to do and accept whatever the doctor says. One nurse in the room, also with over 30-years experience, suggested that nurses were taught for years to stand when a doctor enters the room. Participants practiced with an intensity that is sure to make them both thorough and sensitive to the patient’s needs.

Although there are different levels of care at enhancedCareMD, patient advocacy services are growing. An extra set of eyes can help ensure the patient’s safety. This training aligns with the mission of PULSE of NY: to educate and advocate for safe, quality care. Nurses in the patient advocate role are encouraged to be an extension of the patient. In the PULSE of NY training they are advised to avoid using their nursing skills because doing so can easily lead to overstepping their bounds as advocates. “The nurse advocate has the knowledge to recognize when more care or further explanation is needed but should not take the place of the patient / provider conversation” explains Ilene Corina who has been teaching Family Centered Patient Advocacy since 2006. “The nurse as an advocate shouldn’t be that different than a person with no medical background advocating”.

The Faces of Medical Error...

Left to right, Dr. Leslie Farrington,
Charles Cal, RN, Steven Pegalis ESQ.

On August 29, 2011 PULSE of NY sponsored an evening of education and dialogue at the South Nassau Unitarian Universalist Congregation, Freeport Long Island. The topic was the value of the Informed Consent and the concept of Shared Decision Making process that impacts outcomes in medical care. The video was a 45-minute movie called The Faces of Medical Error…. From Tears to Transparency is the story of Michael Skolnik, a 25 year old man from Colorado who died in June 2004 following unnecessary brain surgery.

His parents, Patty and David tell the story of Michael’s life and the care leading to his death with nationally recognized patient safety experts sharing their views. Three years before his death Michael fainted and multiple brain scans showed a non-life threatening cyst. But their consult with a neurosurgeon and his subsequent advice indicated that this was something serious that needed immediate interventions - surgery. Of note, is that this level of surgery was unnecessary and not consistent with the recommended guidelines in the clinical research.

Michael never recovered. He suffered permanent brain damage and finally after three years of suffering the negative consequence that included nosocomial infections, he succumbed to his injuries and passed away with his parents at his side. During that time, his parents learned that the neurosurgeon was at fault and this case has since been utilized as a learning tool to educate others on transparency in medical care. In Colorado, the Michael Skolnik Medical Transparency Act was passed in 2007 and makes malpractice judgments part of the public record.

The 45 minute panel discussion following the video was moderated by Charles E. Cal, RN, MS, MBA, CPHQ, Vice President of PULSE of NY. Panelists consisted of Dr. Leslie Farrington, a gynecologist in private practice in Freeport NY and Steven Pegalis Esq., Founder and Senior Partner, Pegalis & Erickson, LLC., Great Neck NY.

Dr. Farrington explained that a doctor must have a conversation with the patient and when appropriate the family. Mr. Pegalis agreed and explained physicians are required to protect the public. Discussing the risks and alternatives with the patient keeps them thinking about what the risks actually are. Mr. Pegalis also stressed that all doctors, as in any other situation, must be held accountable for their behavior.

A passionate discussion between audience members and panelists ensued. An audience member responded that the family was not informed of the alternatives including other doctors or other procedures and that Michael may be alive were they given an alternative of if they were made aware of what the literature recommendation beforehand. Another person questioned if Michael was old enough and capable of make his own decisions especially since he was under stress.

It was agreed that while a great deal was left out of the events surrounding the case, that it was a sobering reminder that medical errors, adverse events or negative outcomes in medical treatment are always very complicated.

Through such discussion with the community, PULSE of NY fulfills its mission of engaging and educating the public and communities with the goal of progressing towards safer patient care experiences as patients interface with the health system.

This level of dialogue encourages the community to become informed and to proactively partner with health care professionals, paraprofessionals and hospitals, etc. in their care. By bringing together various experts, PULSE of NY, the grassroots patient safety organization, is able to play a much needed role as they lead a discussion on informed consent and the importance that shared decision making brings towards improving communication and ultimately patient safety.

Sponsors of this event included:

PULSE of NY Update

Mirna Cortes-Obers

PULSE of NY offers patient safety education in Spanish and English!

Mirna Cortes-Obers has been working at the Central American Refugee Center (CARECEN) since 1991. Since 2008, as part of her work at CARECEN, she has been a health advocate for the Hispanic community. Ms. Cortes has assisted individual Hispanic immigrants with obtaining access to affordable and quality health care by ensuring that they are provided both language and financial assistance as required by law. Ms. Cortes has degrees in Public Relations and Sociology and has completed courses toward a Master's Degree in Humanities.

Choosing a Hospital or Doctor

A common concern that is shared with PULSE of NY is how to choose a doctor or hospital. It makes us feel vulnerable when we have a choice and fear we may make the wrong one. So how should we choose?

Web MD Suggests look for a hospital that:

Is accredited by the Joint Commission.
Is rated highly by State or consumer or other groups.
Is one where your doctor has privileges, if that is important to you.
Is covered by your health plan.
Has experience with your condition.
Has had success with your condition.
Checks and works to improve its own quality of care.

Choosing a doctor is a difficult task too but an important one.

From Consumer Reports:

Choosing a doctor is one of the most important things you will do in your life. You will trust this person for his or her expertise, advice and to administer treatment that may save your life.

Try to avoid picking a doctor at random from your health plan's list or out of the phone book. In a recent Consumer Reports survey, people who found their physicians through someone they trusted--a friend, a family member, or another doctor--had the most favorable experiences. (We found a similar phenomenon in a 2004 survey of consumers who visited mental-health professionals.)

If you're picking a doctor to care for a specific condition, ask about how often he or she treats cases similar to yours. Patients we surveyed who took this step were more satisfied with their care. You can also ask the doctor about specialty board certification, which requires advanced training and the passing of rigorous tests.

No matter what hospital we choose, it’s important to remember good things come out of every hospital. Just the same, every hospital has the potential to cause an unplanned outcome or even an injury to a patient. It is therefore just as important that the patient and the family or friend, is also prepared with important information. See our Quick Guide to Patient Advocacy

Helpful Information:

Understanding Prescription Drug Labels

FacebookSaved My Son's Life

To contact PULSE of NY for help as an advocate for a family member or friend or for a speaker or program, call (516) 579-4711.

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