Contributors: Geri Lynn Baumblatt – Executive Director of Patient Engagement, Emmi Solutions; Greg Berney – Senior Manager of Patient Experience, Cone Health (Originally published for the Association of Patient Experience)

Greg Berney

Greg Berney

Several months ago, a Patient Experience Manager at Cone Health was rounding with a nurse on a med/surg department. We’ll call him “James.” As James discussed different patient experience improvement tactics, he verbalized a concern with hourly rounding logs. “Each time I put my initials on that log I feel frustration with leadership because it feels like they don’t trust me.” Leaders, in turn, felt frustrated because the logs were their only way of ensuring hourly rounding was happening.

While James identified a lack of trust as his main frustration, this also articulates a greater challenge in improving the Patient Experience: ensuring our goals and how we motivate caregivers to meet those goals match. As James would tell you, there is nothing about writing his initials on a log sheet that help him provide better care at the bedside. In fact, the log sheet introduces a new goal and motivation for many caregivers – fill it out faithfully and you won’t be hassled by your boss! Hourly Rounding had become a task for James instead of a tool that to provide better care.

How can we tap into caregivers’ natural motivation, and partner with patients, to improve the patient and caregiver experiences at the same time?

At Cone Health, Hourly Rounding was re-launched with a specific focus on helping caregivers understand what’s in it for them. The entire training is around helping each nurse proactively communicate to their patients in a way that ends up reducing call lights.

The best part: patients who hit their call light less frequently tend to do so because they feel their needs are being met! Continue Reading »

Because She Remembered

Contributor: Courtney Hummel – Senior Client Services Specialist, Emmi Solutions

“It is a peculiarity of man that he can only live by looking to the future – sub specie aeternitatis. And this is his salvation in the most difficult moments of his existence, although he sometimes has to force his mind to the task.”
– Victor Frankl in Man’s Search for Meaning

Courtney Hummel

Courtney Hummel

Why do people seek medical care? The entire mindset of a person-turned-patient can be summed up in Frankl’s words. Two concepts are present here: what must be done and what is possible. Focusing on the present, however difficult the task at hand, is only imaginable because of future possibilities. Similarly, healthcare harnesses today’s capabilities and conversations to transport patients to better tomorrows. There must be a hope for a better future – one with less suffering and more happiness – for a patient to willingly submit his person for care. This happens on a daily basis, in hospitals, clinics, and all healthcare environments across the country.

For example, let’s look at a patient in chronic pain that enters a physician practice for treatment. A few words come to mind when thinking of someone in this scenario: struggle, vulnerability, weakness, but also hope, trust, and anticipation.

Walking through the waiting room, the patient carries the physical weight of his pain and the emotional weight of the accompanying depression and anxiety. Can anyone see? The child, waiting patiently upon the lap of his mother, can he sense the burden this patient feels?

The patient tells the receptionist his primary concern: pain. She doesn’t need to know about the others.

“I’ll wait to tell the doctor, or maybe not. Maybe next time. I can see if they go away on their own, though they never have before. No, I can do this. The doctor does care, and there is a way out. “

The patient waits for hundreds of seconds, feeling each one while ensuring that anyone who can see him can’t feel him counting.

Five hundred thirty one. Five hundred thirty two.

The nurse brings him to his exam room, where he tries not to start the ticking clock over. The nurse is kind as she takes his vitals, and his chit-chat putters out to cover up his angst. She also asks him why he’s here today. This is the chance. She’s cracked the door for him to finally open wide. Continue Reading »

Guest Contributor: Robert Bear

Patients with serious chronic diseases should not have to suffer needlessly, but many patients with advanced chronic kidney disease and end-stage renal disease do. They suffer, in part, because of the co-morbidities and clinical consequences of their disease. But mostly they suffer for other reasons: lacking sufficient knowledge about their disease and its history, they are afraid; finding it difficult to communicate meaningfully with their care providers, they feel alone; having to make difficult decisions they are unprepared for – including possibly choosing conservative care only – they feel anxious and bewildered; facing extraordinary lifestyle adjustments – sometimes including loss of employment and financial security – they feel vulnerable. Often, their life expectations have been upended. Many say they have lost dignity, feel a sense of hopelessness and wish for death.

Robert Bear

Robert Bear

Care providers in, and leaders of, chronic kidney failure programs want to prevent such suffering. They understand that the best way to do this is to ensure that their patients are fully engaged: knowledgeable about their disease; able to communicate openly and freely with their care providers; eager partners in joint decision-making; schooled in the principles and practice of patient self-management; accountable. However, accomplishing this is no small task. For example, before developing and executing a patient engagement action plan, administrators, staff members, physicians and patients must be trained in the requisite skills. And it is my experience as a Nephrologist and health care consultant that most of these individuals are more than fully occupied with the urgencies of the day and don’t have the time – or sometimes even the expertise – to lay the important educational foundation for change, let alone develop and execute a plan.

What to do? In Canada, established renal agencies in the provinces of British Columbia, Alberta and Ontario are discussing how best to help nephrology programs accomplish the hard work of developing and implementing patient engagement initiatives. They are talking about employing some of their resources to create a ‘Patient Engagement Toolkit’ for nephrology programs: preferred educational materials; best practices related to creation of enabling roles and structures (physician champions, patient advisors, multi-stakeholder Patient Engagement Advisory Committees); effective implementation approaches; a set of outcome measures through which progress can be tracked and reported upon (a series of potential outcome measures are detailed in the reference below); undertaking the task of ensuring that notable success stories are widely shared. This approach will avoid needing to “re-invent the wheel” for each nephrology program.

Might a similar approach be adopted in the U.S.? In 2013, the Centers for Medicare & Medicaid Services (CMS) required that each American Nephrology ‘network’ develop an initiative to enhance patient engagement. The results of these initiatives are being shared. But perhaps more can be done. In the U.S., could large health systems and/or commercial providers of dialysis services adopt the model being considered in Canada and develop a ‘Patient Engagement Toolkit’ for nephrology programs? Might this not speed the development of a more engaged population of patients with this serious chronic disease? Might this not lessen the suffering of these patients, which is our common goal?

Robert Allan Bear is a former Professor of Medicine (Nephrology) at the University of Toronto and subsequently the University of Alberta. He now works as a health care consultant. He is author of the medical novel Sorrow’s Reward, which explores, through the voices of patients, the realities of patient engagement in chronic dialysis.

Reference:
Bear RA, Stockie S: Patient engagement and patient-centered care in the management of chronic kidney disease and chronic kidney failure. Canadian Journal of Kidney Health and Disease 2014, 1:24

Contributors: Geri Lynn Baumblatt & Kerry O’Connell

Kerry O'Connell

Kerry O’Connell

(Originally published for the Association of Patient Experience)

For many patients, the Internet becomes their best friend. They spend evenings searching for cures for damaged nerves. When Kerry O’Connell fell off a ladder and destroyed his arm, and when surgeries and treatments failed and made his pain and function even worse, he went, as most of us do, to look for answers online.

When showing this online research to his physician, he was advised to be careful as much of that info was not reliable. Fair warning, but when people are searching for answers and trying to collaborate in their care, they’re often dismissed and made to feel like they overstepped.

Kerry found out he could access medical journals from the med school library. For his next visit he came armed not with flimsy Google search results, but real studies. His doctor was not impressed, saying even studies from last year were out of date and nowhere near the current state of the medical art.

People are searching for a reason
It’s often a sign they feel uneasy and don’t have the answers they need. It’s also an opportunity to find out what those are. In Kerry’s case, he was looking for alternatives to more surgery, drug side effects, better descriptions of typical outcomes, and empathy from others who had gone through the same thing.

Anytime we can provide patient-friendly resources that proactively answer these questions, it can help keep people from going down those online rabbit holes.

But people can also find meaningful information. Sometimes it’s the empathy and support from connecting with others. Other times, people like Dave deBronkart can find out about a medical treatment for his rare cancer by talking to an online patient forum. A treatment his physicians didn’t know about at the time.

As patients and families increasingly turn to online resources, how do you help them find the good ones? And how do you work with them? Continue Reading »

Contributor: Emily Azari – Senior Health Writer, Emmi Solutions

In my last post, we began exploring the cognitive biases (unconscious errors in thinking) that come into play when choosing whether or not to pursue prenatal genetic screening for conditions like Down syndrome. Today I’ll cover two more biases we considered as we developed a decision aid to help women wrestle with that choice.

Present focus bias
We have a hard time imagining and planning for our future selves. This is, of course, why hangovers and credit card debt exist. This “present focus bias” gets in the way of all sorts of responsible health behaviors that have long-term benefits with short-term cost (think exercise, eating salads, and getting check-ups).

What does this have to do with the decision to pursue prenatal genetic testing? Well, you might be pretty good at anticipating how your decision will affect you in the near term, but most people won’t be able to imagine what it would actually be like in the future to raise a child with Down syndrome. This could cut two ways:

  • You might figure there’s just no way that you could cope with a child with special needs, when in fact people are extraordinarily resilient, time and time again displaying a capacity to rise to unexpected life challenges
  • In contrast, you might assume that raising a child with special needs is not terribly burdensome. But you might not be fully grasping the lifelong issues involved, and it’s hard to imagine yourself in those shoes 30 years from now

Our decision aid tries to help women break out of this present focus tunnel vision. We encourage them to take the time to learn what life is like for families of children with special needs. When thinking through her options, we ask her to consider how the decision would affect the child, herself, and other family members over the long-term — emotionally, physically, and financially.

Representative thinking
Part of the reason it’s so hard to imagine different future scenarios is something called “representative thinking,” where we assume what we know is reflective of an entire category. Continue Reading »

Contributor: Emily Azari – Senior Health Writer, Emmi Solutions

The mind works in mysterious ways. We like to think we’re highly rational, in control of our opinions and decisions. In reality, we’re susceptible to a slew of cognitive biases that lead us to think and act in perfectly irrational ways. And as the field of behavioral economics shows, we’re predictable creatures, falling into the same traps over and over.

Marketers have long known this. For instance, “buy now, pay later” was born out of our attraction to immediate rewards and our extreme aversion to losing. Now, other fields are using these insights to structure information and interventions so it becomes easier to make more advantageous, or at least better-reasoned, decisions.

How does this apply to health?
For anyone working in health behavior change or medical decision making, it’s helpful to understand the psychological forces at play. For example, we recently incorporated these principles into a decision aid to help women choose whether or not they want to pursue prenatal screening for conditions like Down syndrome. (A decision aid is a tool to help people understand all their options, including the pros and cons and how those options fit in with their values and preferences.)

The decision to pursue or decline prenatal screening is not easy. False positives, caveats, and ever-changing tests muddy the waters. In addition to communicating the basics about screening, we wanted to help balance out the knee-jerk reactions and mental mistakes that could plague someone making this decision.

I’ll cover these cognitive biases topic in two posts. Today, I’ll talk about risk and defaults. (By the way, that’s the closest I’ll ever get to sounding like I know something about finance — but don’t worry, I’m not talking about market collapse.) And next time, I’ll go over present focus bias and representative thinking.

Overestimating risk
Turns out, we’re not great at estimating risk. That was a good thing from an evolutionary perspective: when a predator comes your way, you’re not going to want to sit there and ponder how likely it is that he’s already had lunch. These days, our brains still process risk the same way our ancestors did. We make snap judgments and overestimate risk for emotional and scary things. Continue Reading »

Contributor: Emily Azari – Senior Health Writer, Emmi Solutions

Emily Azari

Emily Azari

The heart of shared decision making (SDM) is providing people with balanced information about all their options for a medical issue. For something like breast or prostate cancer treatment options, this makes good intuitive sense. Who wouldn’t want to learn about each possibility and weigh the good, the bad, and the ugly?

But as I began thinking about SDM for a new prenatal genetic testing program we’re developing, I wondered: how much information is too much, especially if someone wasn’t even aware they had a decision to make? When many women find out they’re pregnant, they’re skipping along on Cloud 9. Then… pow!… they’re confronting this incredibly weighty decision. That innocent stroll just morphed into a muddy slog under the threat of a severe thunderstorm.

Prenatal testing: a changing landscape
The decision to pursue genetic testing for chromosomal conditions like Down syndrome is a relatively recent one. Just a couple decades ago, there wasn’t much screening aside from a red flag for women of advanced maternal age. Testing consisted mainly of amniocentesis, an invasive procedure that comes with a small risk of miscarriage, so it was only done for high-risk pregnancies.

Technology advanced rapidly. In 2007, the American Congress of Obstetricians and Gynecologists (ACOG) recommended that ALL women be given the option to screen for chromosomal problems. As recently as 2012, ACOG began recommending a newer form of screening, cell-free fetal DNA testing, to high-risk women. This test is more sensitive and has fewer false positives — in fact, experts believe it will be extended to all women once it has been validated among lower risk populations.

In short, screening options have multiplied, yet clinicians often don’t have time to explain the accuracy, risks, benefits, and cascading decisions involved with this extremely sensitive topic. Continue Reading »

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