Category Archives: Advocacy

In Healthcare: Respect= Safety

Written by Deborah Caputo Rosen, RN, PhD

Finally!  Respect= Patient Safety. From that wise purveyor of direct- to- consumer information and education, Consumer Reports, comes a report written in easily understandable language that underscores the message of the Wilson-Stronks advocacy program: Improving Healthcare by Putting Patients in Patient Safety (How Not to Get Sick(er) in the Hospital).

Consumer Reports conducted a survey, of 1,200 recently hospitalized patients, funded by the Gordon and Betty Moore Foundation.  It demonstrated a clear link between participants’ perceptions of respectful treatment and their safety during the hospitalization. The survey defined measures of respect, including:  “the ways staff members and physicians communicated and, whether they acted with compassion, honored patients’ wishes and acknowledged mistakes”.

Whether it is called patient satisfaction, patient engagement, or patient and family-centered care, people who are actively involved in their own healthcare, experience better outcomes and have lower health costs than those who are not (Dentzer 2013). In the Consumer Reports survey, one-third of respondents felt doctors and nurses did not always listen to them without interrupting, 25% said staff did not always treat them as adults able to be involved in their own care decisions, and 34% felt their expressed wishes were not honored. Twenty-one per cent felt they experienced actual discrimination in their care.  Those who rated their experience of respect poorly were two and a half times more likely to experience a medical adverse event than those who described usually being treated respectfully.  And dismissive or poor treatment made survey respondents feel uncomfortable asking questions about their care and the steps being taken to keep them safe. Those who did not “Speak Up” were 50% more likely to have experienced at least one medical error during their hospital stay.

The Consumer Reports article also includes a table called Top and Bottom Scoring Hospitals for Safety and Respect. The data are drawn from the organization’s hospital ratings tools and are based on January 2014 data from CMS . Reported safety scores are based on mortality rates, infection rates and hospital readmissions.  Patient experience (respect) scores include doctor and nurse communication, communication about discharge and overall impression of the hospital.

Many consumers will benefit from the wide availability of this Consumer Reports coverage.  Their recommendations parallel what Wilson-Stronks teaches patients/families and providers in our advocacy curriculum: “Know-Ask-Speak”!

  • Choose the right hospital
  • Help providers see you as a person
  • Invite your doctor to have a seat
  • Have “Your People” with you
  • Know when errors tend to occur
  • Find a “Troubleshooter”
  • Be assertive and prepared but courteous
  • Keep the concept of partnership in mind
  • Write things down
  • If you don’t understand, ask again

Once healthcare consumers recall that they are the CEOs of their own healthcare teams; are purchasing services from healthcare professionals, and have choices, rights and clear expectations about the outcome of care, more than half of the work is done! Then, some expert coaching of necessary communication skills, negotiation skills and facts about their diagnosis and treatment options can restore a balance of power and assure a safer, more respectful healthcare experience.

Contact us to learn more about how we are “Putting Patients in Patient Safety”.

Work Cited:

Dentzer, S. Health Affairs. February 2013, 32:202. Accessed January 10, 2015
“How Not to Get Sick(er) in the Hospital”. Consumer Reports. February 2015, p. 32-37.)

Be Very, Very Scared! What You Don’t Know CAN Kill You…

Hospital Associated Infections Part 2: Catheter Associated Urinary Tract Infections (CAUTI)

Posted by Deborah Caputo Rosen

54,500. That is the number of reported urinary tract infections linked to the use of a catheter in acute care hospitals in 2012. ( That is the GOOD news. The number of reported urinary tract infections linked to the use of a catheter was 93,000 in 2011! ( Focused efforts to reduce healthcare associated infections such as these helped to reduce the incidence.

In 2008 the Federal Center for Medicare and Medicaid Services announced new rules for payment for the cost of treating “conditions that could reasonably have been prevented” (CMS 2012). Hospitals could no longer bill those e patients for any charges associated with hospital-acquired complications. Catheter associated urinary tract infections (CAUTIs) were identified as among those complications.

Why? Let’s understand urinary catheters.

A urinary catheter is a thin, flexible, sterile tube that is inserted into the urinary bladder through the urethra. Catheters can be used to drain the bladder only once and then removed or they may be “indwelling” and remain in place once inserted.. Indwelling catheters have a balloon that is inflated inside the bladder. This prevents the tube from slipping out of the body. Such catheters (often called Foley catheters) are connected to sterile tubing and a bag to collect and measure urine.

Catheters are inserted when a patient cannot urinate normally. Catheters can prevent damage to the urinary tract (bladder, ureters and kidneys) caused by retained urine. They may be used when a patient is anesthetized for lengthy surgery, for reconstructive surgery to the urinary tract, and when normal urination is not physically possible due to spinal cord injury.

Catheter associated urinary tract infections result from microorganisms entering the body via the catheter during insertion or handling of the tube. The system may also become contaminated by opening the collecting tubing and/or drainage bag. The drainage system works by gravity and must be kept below the level of the patient’s bladder to avoid backward flow of urine. Many of the common organisms that cause infection form “biofilms” on the catheter and are difficult to eliminate with antibiotics.

Catheters should be inserted only for appropriate medical indications and left in place for the shortest period of time necessary. Skin and mucous membranes that remain intact are good barriers to microorganisms. It is critical that the professional who inserts a catheter utilizes proper sterile technique and minimizes irritation to the lining of the urethra and bladder. All healthcare staff caring for patients with a catheter system always must practice correct hand hygiene, assure that the drainage system is not opened and maintain it below the patient’s bladder.

One challenge faced by patients is that the doctor or clinician who prescribed the catheter may not remember or notice that a patient remains catheterized; resulting in longer than necessary catheterization. As a precaution, patients and family members should be prepared to remind the healthcare team. The nurse caring for you should assume responsibility to obtain orders to remove the catheter.

Know, Ask, Speak

Wilson-Stronks advises all patients and their care companions to keep in mind the Wilson-Stronks patient safety mantra of “Know-Ask-Speak” to decrease risk of healthcare acquired infections, including catheter associated urinary tract infections (CAUTIs). When you or a patient you love enters the hospital….


  • What a catheter associated urinary tract infection or CAUTI is.
  • Why a catheter is being recommended/was used.
  • The name and credentials (MD, RN, PA, NP, medical or nursing student)) of the professional who will/did insert the catheter.
  • The difference between a single catheterization and an indwelling catheter.
  • This fact: The risk of CAUTI increases after 24 hours with an indwelling catheter.
  • This fact: If you/the patient is older than 60 years or has had a compromised immune system the risk of CAUTI is increased.
  • Fever is one sign of infection.
  • Collection of urine specimens (if indicated) should be done without opening the drainage system.
  • Urine should drain freely. Debris from the body can sometimes collect and obstruct a catheter. If the catheter is still necessary it must be replaced, not irrigated.


  • Are there any alternatives to catheterization?
  • Can an ultrasound of the bladder can be done before catheterizing to measure the volume of urine and allow safe waiting for natural urination?
  • If a catheter must be inserted, can a single (“straight”) catheterization be performed instead of an indwelling type? When will the catheter be removed? And who will remove it?
  • Every day: Why the catheter is still in place and when it will be removed.
  • Whether you/the patient has a fever.
  • How the any required urine specimen will be collected. (It should be done without opening the collecting system and should follow sterile procedures).


  • Request that providers wash their hands in front of you.
  • If a collection system is above your/the patient’s bladder insist that it is relocated correctly below the bladder to prevent back flow of urine.
  • If a specimen of urine is needed, insist that it is collected with sterile procedures without opening the collecting system.
  • Refuse to allow anyone to disconnect the drainage system.
  • Refuse to have the catheter irrigated because it is “clogged”. If it is still medically necessary, it must be replaced.
  • Tell your nurse and doctor if you have pain or feel feverish or achy.
  • Tell your nurse if you/ the patient seem(s) confused or unusually restless.
  • Notify your nurse if the urine in the collection bag appears cloudy or unusual in color.
  • If you/the patient may have fluids, drink as much as possible.

Be Very, Very Scared! What You Don’t Know CAN Kill You…

Hospital Associated Infections: “C. Diff”

Posted by: Deborah Caputo Rosen

What do Harvard Magazine and AARP: The Magazine have in common? In the past five months both have published articles about “Superbugs”. “Superbugs” are those microorganisms that have developed resistance to commonly- used antimicrobial medications. “Superbugs” are dangerous and difficult to treat.

The Centers for Disease Control and Prevention (CDC) has been in the news providing guidance on the prevention and science of Ebola infection. But Ebola, although terrifying to many, has sickened only a handful of Americans, and only one person has died in this country of Ebola.

Scarier than Ebola is that on any given day about 1 in 25 hospitalized patients has at least one healthcare-associated infection (HAI). In 2011 there were 722,000 HAIs in hospitals. About 75,000 people died from these infections¹.

What does this mean? It means that people are admitted into hospitals without infections but develop an infection during their hospital stay.

Some of the types of infections patients and healthcare workers need to be vigilant about include: catheter-associated urinary tract infections, central-line associated bloodstream infections, ventilator-associated pneumonia, surgical site infections and hospital-onset Clostridium difficile infections (CDI or “C. diff” infection).

Why do patients acquire infections in the hospital? Let’s use C. diff as our example. In 2012, 107,700 cases of C. diff were reported in acute care hospitals². Often, these cases are preventable.

C. diff is the most common cause for infectious diarrhea in hospitals. Long-term care (LTC) facilities may be at even greater risk. In 2003, 2% of patients discharged to long-term care carried a diagnosis of C. diff infection.

There are people who carry C. diff without symptoms. These bacteria produce spores that are shed in feces. The spores can persist for 5 months on hard surfaces that have not been adequately cleaned. They are transferred on the hands of healthcare workers and are not adequately removed with alcohol-based hand rubs. Alcohol-based rubs do not kill the spores. Using them alone, without soap and water washing, merely spreads spores around on the hands but does not completely remove them.

C. diff spores are dormant in the colon until the normal bacterial environment is disrupted. The usual culprit is an antibiotic. Antibiotics can kill harmless C. diff spores. When that happens, C. diff transforms into a form that inflames and damages the colon, causing colitis of varying severity.
C. diff requires both exposure to antimicrobial agents and new acquisition of the organism. This occurs by transferring fecal spores to the mouth, usually by touching contaminated surfaces. Symptoms begin soon after infection; with watery diarrhea 3 or more times per day, cramping pain and tenderness, and fever. If unrecognized and untreated, the symptoms worsen.

The mortality rate for CDI varies. Some patients may recover without therapy other than discontinuation of antibiotics. That is the appropriate first step. Although it may seem counter- intuitive, additional antimicrobial agents are usually prescribed. Elderly patients who are frail and who do not respond to the first or second medications frequently used to treat the infection and supportive therapy for dehydration may become seriously ill, with a mortality rate as high as 25%.³

CDI recurs at least once in 50% of people, either because the first infection was incompletely treated or because of a new exposure. Highest risk groups include the elderly, those taking antibiotics and those with long and/or frequent hospitalizations. Virtually every antibiotic can increase the risk. The risk of acquiring the infection increases with time and can be as high as 40% with prolonged hospitalization. This is due to exposure to healthcare workers’ hands as they care for infected patients, touch contaminated surfaces and experience failures of correct hand washing technique.

Breaking the cycle requires proper hand hygiene, environmental decontamination and a hospital program of antibiotic use monitoring (“antibiotic stewardship”).

Know, Ask, Speak

Wilson-Stronks advises all patients and their care companions to keep in mind the Wilson-Stronks patient safety mantra of “Know-Ask-Speak” to decrease risk of healthcare acquired infections, including C. difficile. When you or a patient you love enters the hospital….


  • What C. diff is.
  • What the symptoms are.
  • How it is transmitted.
  • How to properly wash your own hands and when to do so.
  • Whether you/the patient has been taking or is now being given antibiotics.
  • Whether you/the patient has had a long or recurrent hospital or LTC stay.
  • If you/the patient is older than 60 years, has had a compromised immune symptom, or recent gastrointestinal surgery.


  • Why antibiotics are being prescribed?
  • Whether and what tests will guide antibiotic selection?
  • Whether the symptoms could be C. diff?
  • How the C. diff will be treated?
  • If your room has a patient with C. diff in it?
  • Whether disposable equipment can be used?


  • Request that providers wash their hands with soap and water in front of you, reminding them that alcohol rubs do not kill C. diff spores.
  • Learn how equipment, including BP cuffs, portable commodes and rectal thermometers are disinfected.
  • Learn how surfaces, including floors, bedrails, bedside tables, call buttons and bathrooms are cleaned.
  • Tell your nurse and doctor if you have cramping pain or watery diarrhea, especially if you are taking an antibiotic.
  • If you become infected with C. diff: learn if you will be in a private room or with another patient with C. diff, if contact isolation precautions will be observed, if visitors should follow such precautions.
  • Learn what the likelihood of recurrence is and how to reach help if you have symptoms after discharge.



³Cohen S, Gerding N, Johnson S, et al. Clinical practice guidelines for Clostridium difficile infection in adults: 2010 update by the Society for Healthcare Epidemiology of America (SHEA) and the Infectious Diseases Society of America (IDSA). Infect Control Hosp Epidemiol. 2010;31(5):431-455.


Healthcare Horrors!

This Halloween we are launching the first in a series of blog posts about something really SCARY – Healthcare.


You may be surprised to learn that medical errors are the 3rd leading cause of death in the United States surpassed only by cardiovascular disease and cancer.
Hospitals can be scarier than any house of horror. It is estimated that more than 130,000 errors occur each month in the nation’s hospitals. Each month!!!

Deaths due to medical errors have increased to about 210,000-440,000 per year.
Some of the most common medical errors—and this is scary–

  • Medication errors-
  • Infections
  • Falls
  • Wrong site surgery
  • Misdiagnosis
  • Failure to identify the correct patient — Care provided to the wrong person

Unlike cardiovascular disease and cancer, there are few public campaigns aimed at preventing the occurrence of medical errors. Efforts to reduce medical errors are leaving out the most important stakeholders: PATIENTS!

Wilson-Stronks is changing how medical errors are being prevented. Learn more on our Advocacy Page and our Advocacy Blog.

Putting Patients in Patient Safety

It is time for us to become smarter about our healthcare! Many medical errors are preventable, and patients are a key element to creating systems of care to minimize error and improve safety.

A few tips for protecting yourself and those you care about:

  • Don’t go alone! Just as we don’t allow children to trick-or-treat alone, anyone receiving healthcare is by definition vulnerable and should have a care companion/support person with them. Learn more
  • Wash away the scary bugs! Make sure that all caregivers including your physician wash their hands before they touch you. Who knows what monster they were treating before they arrived to care for you! Learn more
  • Don’t be afraid to ask! If something doesn’t make sense, ask. Healthcare is complicated and confusing. Bring a list of questions and paper and pen to write down notes about your care. Learn more

Learn More: Our Patient Advocacy Program Continue reading

Have Soapbox; Will Travel

By Amy Wilson-Stronks

Last month I delivered the keynote address at the American Medical Association’s Fall 2014 Commission to End Health Care Disparities Meeting. I was flattered to be asked to speak to a room of accomplished healthcare professionals who are leading efforts to improve healthcare by addressing healthcare disparities. I envisioned this as an opportunity to share some observations made during the years that I have been working toward the same goal/directing efforts in the same direction.

Specifically, I saw this unassuming audience as an opportunity to get on my soapbox, a position I find myself on with increasing frequency as I continue to work in healthcare. The title of my talk was Putting Patients in Patient Safety: Lessons Learned.

When tasked with delivering the keynote, I was told to “ ‘ignite’ the audience; give them something provocative to consider, something that will keep them awake during this dinner time presentation”. Since the focus of this group is the reduction of health disparities with the ultimate goal of eliminating disparate care, I believed I could deliver.

Why? Because fundamentally, our current systems are so flawed that none of us will EVER be able to eliminate disparities for any vulnerable or underserved group. I envisioned this message: Give up, we are wasting our time!

No, that was not my opening line. But beneath my remarks, that sentiment muttered like a mantra; it was the gist of my talk, whether articulated or not.

Why am I so negative? Several reasons. And, yes, these are points I shared with my esteemed colleagues.

There is no such thing as racism, sexism, (Insert any “ism”) .
“Not in my backyard,” “We treat everybody the same.” It would be short sighted and inaccurate to blame healthcare organizations for racial, ethnic, and other healthcare disparities. However, since health care is received at healthcare organizations, they necessarily are essential to the solution. Yet, many do not believe that they are culpable, nor do they think it is a problem that they need to address as a priority.

If our care organizations are not interested in evaluating the care they provide to various population groups that have been identified at the national level as suffering from health and healthcare disparities, then how will we recognize when we are doing things right? I have found that many healthcare organization leaders are not aware what is happening across their organization during patient-provider interfaces. They may set expectations that all patients are treated with dignity and respect, but they aren’t told, nor do they observe the Emergency Department staff comment, “Oh no! Not another Ebonics. I wish my shift would end already!” They don’t realize how unconscious and conscious bias can create a chasm between providers and patients from different racial and ethnic groups. And the bias isn’t only between providers and patients, but also among employee groups, as one HR professional once confided to me when asked about the lack of racial diversity in his organization,

“You know, the blacks (employees) really need to get over (themselves); Slavery was over a hundred years ago.”

Yeah, I guess we all need to get over it. But that won’t eliminate disparities.

Meaningful Use isn’t Meaningful
Meaningful Use is designed to establish a degree of data accessibility across the healthcare system to support care transitions, improve data access and communication, and improve systems for monitoring and evaluating quality by introducing uniformity and compatibility. This makes sense. And it is necessary for us to really understand how healthcare disparities present, what causes them, what removes/improves them, etc.

Unfortunately, the data necessary for us to address healthcare disparities are rarely captured, and if captured, they are rarely accurate.
“Only Press Ganey Data Matter”
“We have the data field right here.”

We need to incite collective action to incentivize the vendors of Electronic Health/Medical Record (EH/MR) systems to create adaptable programs for the collection of data on patient race, ethnicity, and preferred language. To the AMA, NMA, NHMA, AHA, and all others working to improve healthcare and advance equity– please join us on our soapbox.

If we still can’t get this right after more than 10 years, how are we ever going to effectively collect data on sexual orientation and gender identity?

Our Systems of Care Aren’t Designed by Patients
“If you listen to your patients CAREFULLY they will give you the diagnosis; if you listen a bit longer they will give you the treatment”

“Only physicians are capable of judging what is or is not good medical practice. Patients and hospital personnel may learn to recognize good practice but only the physician can accurately evaluate its quality.”-Explanatory Supplement to the 1965 Joint Commission Hospital Standards.

“Well, when I am in their room and they are all talking in another language I feel uncomfortable. I feel as if they are talking about me. I don’t like that.”

“Although my doctor knew all about me, each encounter with new people—with blood draws, ultrasound, breast x-ray, etc.—had the basic anxiety of the procedure and layered on to that, the possibility of homophobia and having to watch out for myself” ¹

If patients cannot communicate with their caregivers, then caregivers can’t do their job.

Unfortunately, many things complicate communication, such as trust, fear of hospitals, cultural beliefs and practices, conscious and unconscious bias as well as basic human assumptions. Healthcare professionals must involve the patient in every aspect of their care and not make any assumptions.

This drives the work we do at Wilson-Stronks. We want to Improve Healthcare. And we know that the only way to do so is to work collaboratively and act collectively. This collaboration and collective action must involve our patients. We were honored to be asked to share some of our experiences “in the world” with the AMA Commission to End Health Care Disparities.

¹ Margolies L, Scout NFN. LGBT Patient-Centered Outcomes: Cancer Survivors Teach Us How To Improve Care for All. April 2013.

Note: All other quotes are reflections of my thoughts from information that others have shared with me.

Advocating for Change: Improving Healthcare

Posted by Amy Wilson-Stronks

I am fortunate to have a very wide, robust, multi-disciplinary, diverse network of colleagues and friends with expertise in many areas related directly and indirectly to healthcare. I have had many conversations with my network about our healthcare system, and unashamedly, I find myself frustrated with how healthcare is delivered. I am stunned at the lack of sincere focus on the patient.

Sure, “patient engagement,” “population health,” “patient experience,” and “patient satisfaction” cover the pages of healthcare trade publications. But as I work with healthcare organizations, I see that sincere attention to the needs, beliefs, and expectations of the patients, families, and communities receiving care is relatively rare.

I know that there are many reasons for the lack of awareness, and but the issue does not exist because healthcare providers don’t care about their patients. However, competing priorities, the complexity of payment systems, staffing challenges, and the burden of documentation and electronic record systems limits the time that direct care staff and clinicians have to communicate effectively with patients and family members in order to sincerely understand the patient.

Historically, Wilson-Stronks has engaged clients by collaborating with healthcare organizations to help them create systems that support effective patient-provider communication and understanding. Unfortunately, effective communication is an area of quality and safety improvement and risk reduction that is not always viewed as a priority. We are left to wonder, “Well then, WHAT? What CAN we do to improve healthcare?”

A conversation last summer finally made things click. Ilene Corina, a grass-roots patient safety advocate and trainer, responded to my laments regarding patient provider-communication with this comment,

“That’s why I work with patients. (Decision-makers) don’t really know what is happening at the bedside. They sit behind their desks and hold meetings. And when they are on the units, it’s a show in their honor; unlikely the day-to-day reality faced by most direct care staff, clinicians, and patients.”

Ilene helped me (finally) understand how Wilson-Stronks can have a more meaningful impact: Working to empower the people who are at the patient’s bedside–the family caregiver; the healthcare proxy; the support person. I don’t know why it took me so long to get it, but my conversations with Ilene inspire our launch of the Wilson-Stronks Improving Healthcare Advocacy Program: Putting Patients in Patient Safety.

Many people who read this blog may have had personal experiences that made them aware of the gaps in the healthcare system. Some people may know about the gaps from the experiences of a friend or family member. Others may be familiar with issues because they are among the direct care staff trying to find the time and resources to sincerely understand their patients. Many of you have shared your stories with me, as I have shared my own.

But FINALLY I get it, and now Wilson-Stronks is ready to act: the only way to really improve healthcare is by taking our care into our own hands and educating and empowering those around us who have less medical and health literacy than we do.

I hope I can share some great success stories with you soon. Please know that the power of your stories can have a positive influence, and I thank you all for sharing to help the rest of us better understand what it is like to be in the hospital gown and sitting at the bedside of our loved one.

Putting Patients in Patient Safety

Wilson-Stronks is readying to launch our patient advocacy program “Putting Patients in Patient Safety” this fall. Prepare yourself to be smart about healthcare! Join us and our special guest Ilene Corina (PULSE of New York) to learn from a national expert and ensure you and your family receive high quality healthcare! For more information email