Advancing Health Literacy

Patient Satisfaction Is Linked to Knowledge

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How do we improve patient satisfaction and experience while reducing overall healthcare costs? Create knowledgeable patients.

As reported in Modern Healthcare, a study published in 2013 found that patients who feel they have the “knowledge, skills and confidence to make healthy choices and informed medical decisions were less costly than those who felt they lacked the same knowledge, skills and confidence.”

The challenge is that medical knowledge transferred to patients needs to be customized, which takes time. A doctor’s time, meanwhile, must fit into standard, 15-minute appointments. Solving that puzzle will lead to both an improved patient experience and reduced healthcare costs.

I want to share two stories that illustrate the challenges and possible solutions. The first is from my own experience. The second is from Kathleen Cattrall, chief experience officer at Help Me Health.

Randi and Gary’s Patient Experience

I took my 15-year-old son, Gary, to his gastroenterologist for Crohn’s disease. Gary’s pain level had grown to 10, and neither of us had slept in two days. We needed to figure out how to manage his Crohn’s.

The process for the appointment is always the same: check in, confirm insurance. The nurse weighs him and measures his height. Then we wait. In the GI exam room, there is a huge color poster of the digestive system. Gary no longer kills time tracing it with his finger, as if it’s a piece of food through a maze, reciting each organ along the way. It’s a game he’s played far too many times.

When the doctor finally arrives, he speaks directly to Gary.“Hi. You’ve grown three-quarters of an inch and gained three pounds,” he says as a hello. Gary bursts into a smile. The doctor launches immediately into saying, “I’ve looked over your CT scan from yesterday and your Crohn’s disease has progressed. Your current medication, Pentasa, will not be working for you anymore.” He says it so quickly. No questions about Gary’s health or school or yesterday’s scary ER visit.

My heart seems to stop. Crohn’s is a digestive disorder that lasts a lifetime, requiring more and more medications to keep it under control. If the medications stop working, the doctors surgically remove more and more diseased intestine. Sometimes the medications cause cancer. The doctor must know the path my son’s life would take but he’s never discussed this with us. Initially, he handed us pamphlets. One was a cartoon book for Gary. With little practical information from the doctor, I searched the internet, which scared me with too much detail. I was confused. Now, I’m in shock. The doctor rambles on about two new medications, 6MP and Remicaid, to relieve the new symptoms. He explains that both medications will help reduce inflammation and that Gary will be able to eat anything he likes. There are side effects with the medications; he hands me a five-page photocopy of a description of Remicaid. As he tells Gary, “This is one of the best medications,” I glance down and see in bold typeface, “increased risk of lymphoma.” My heart sinks. The doctor says something about Gary losing his hair with 6MP. Truth is, I barely hear anything.

I have no idea what Gary is thinking. I look at him, and he blurts out, “My friends are on Remicaid. They are doing great, Mom.” These are friends he made at Camp Oasis, a summer camp funded by the Crohn’s and Colitis Foundation of America. On Facebook, they are the ones now influencing his choices, not me. Like any 15-year-old, Gary just wants no pain and to fit in. My anxiety is so visceral, I want to throw up. I have a doctor following protocol, a kid in pain, and camp friends all pointing in one direction, the one I’ve nicknamed “the cancer causing cure.”

I gag. The doctor calmly says, “We have options for new medications, and we don’t have to decide today. In the meantime, Gary should take these two oral antibiotics. Just go downstairs, get an ultrasound. I’ll see you next week.”

“OK, thanks,” Gary says. As is standard for most patients these days, the doctor spent 15 minutes with us.

Kathleen’s Patient Experience

I sat by my big sister’s hospice bedside as she drew her last breaths. Barbara had spent too many of her young years battling breast cancer, and the end was near. “You won’t get this,” she often said to me, “it’s not hereditary.” I know now what I didn’t know then: The type of cancer Barbara had was not hereditary. She was right. But I didn’t believe her. The fear that enveloped the women in our family, including Barbara’s daughter, was real. Now I have more facts about breast cancer and know that any of the women in our family could still get breast cancer. We just won’t get it because it’s in our genes; it will be due to some other factor.

But I’d seen the advertisements for genetic testing. My mammographer has recommended genetic testing many times. The possibility that I could get cancer because it was “in my genes” would not go away.

I learned the facts, thanks to a geneticist’s assistant who educated me before testing for the BRCA1 and BRCA2 gene mutation. She carefully and methodically flipped through the pages of a three-ring binder that resembled a high school science project. She walked me through the charts, diagrams and drawings of normal and mutated genes. She explained how cancer can be caused by mutated genes passed down through the generations. The test is expensive, she told me, and often unnecessary. Only 5 to 10 percent of breast cancers in the U.S. are linked to an inherited gene mutation. More importantly, there are risks and benefits that must be considered. She had me fill out a family history and worksheet, which, when all the questions were answered, told me I did not meet the criteria.

I decided not to get the test, and I felt as if I had come to that conclusion myself. Armed with knowledge, I felt empowered. The geneticist entered the room and asked if I had any questions. I did not. The encounter was clear, concise, consistent with how I receive information, and I felt confident in my decision. I set aside my fear. The appointment lasted 20 minutes, 15 with the assistant and five with the geneticist.

“My doctor makes me feel stupid.”

These two stories contrast the range of emotions patients and their loved ones may feel during a single appointment. In our work, we often hear patients say, “My doctor makes me feel stupid.” “I don’t get enough time to absorb what the doctor was telling me.” “I feel like it’s the doctor’s decision, not mine.” “The doctor’s office rushed to schedule surgery before I had a chance to think about it.”

Both appointments were typical. Most doctors’ appointments are scheduled for less than 20 minutes. That’s not enough time to fully absorb all that medical information, let alone ask questions. And that shows in patient survey results. According to Hospital Compare, a website of the Centers for Medicare & Medicaid Services, only 52 percent of patients strongly agree that they understood their care when they left the hospital. Medical information is complicated, and patients are unfamiliar with the terminology.

Getting a medical diagnosis is personal. Patients have questions. Treatments often require behavior and lifestyle changes. Patients have their own values, preferences and goals that need to be incorporated into the best treatment solution for each individual.

Coping with new realities, learning terminology and patient and loved one’s emotional states are just a few of the factors that we find complicate and color the patient’s evaluation of their experience. All this in an appointment that lasts less than 20 minutes.

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The Age of Dr. Google

Today, doctors have many tools to help them communicate essential information to patients. But, sifting through the best platforms, tools and options is a full-time job. Many doctors rely on their existing processes of communication instead of implementing the new “flavor of the month.” A thoughtful, enterprising person at Kathleen’s geneticist’s office cobbled together a three-ring binder presentation to ensure that patients would receive consistent, reliable information about gene testing to help guide their own decisions. A homespun solution to patient education, but it worked.

Contrast Kathleen’s experience with the way medical device manufacturers and pharmaceutical companies typically provide information. These brochures and photocopied handouts, like the one Randi received, are intended to support medical professionals during their communication with patients and promote the company’s products. From the patient’s perspective, it is more like approaching a traffic stop with too many signs. At some point, all of the warnings just become noise. Similarly, doctors who are reciting all the risks are talking, but they’re not listening. Patients won’t hear what doctors are saying about the company’s product because it’s not unique to them. Patients want information tailored to their values, goals and preferences. Medical jargon causes patients to feel stupid.

It’s no wonder patients and moms, like Randi, turn to Dr. Google – certainly not a reliable source of information, and exceptionally scary, as she soon found out.

Today, patients are smarter and better informed. Information, reliable or not, is as close as their smartphone. And the more they know, the less likely they are to take anyone’s word at face value, even if that “anyone” has an M.D. after his or her name. Higher deductibles and relentless news coverage about healthcare safety empowers them to ask questions. They are showing their teeth, and they are not necessarily smiling.

A key goal for physicians in 2017 is to take the time to see if patients are satisfied with their understanding of their care. Ask them if they know:

  • Why they need their medications
  • How to care for themselves at home
  • What are the risks of their medical treatment

In an upcoming post, we will discuss the key elements of providing satisfactory knowledge and suggestions for increasing patient knowledge without increasing the time needed for an appointment.

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Randi Redmond Oster Randi Redmond Oster is president of Help Me Health and the award-winning author of Questioning Protocol which helps patients navigate the healthcare system and medical professionals understand the patient perspective. Randi spent the first 18 years of her career in GE working on complex aerospace systems and building profitable financial services businesses. The skills gained in GE empowered her to effectively navigate the healthcare system and find opportunities for process improvements, as she advocated for her chronically-ill son in the hospital. Today, she is a Malcolm Baldrige Examiner focusing on healthcare and a leading speaker on healthcare reform, shared-decision making and patient engagement. www.HelpMe-Health.com Randi is also on Twitter @helpme_health, Facebook (HelpMeHealth1) and on LinkedIn.

Randi Redmond Oster, President, Help Me Health has 3 post(s) at EngagingPatients.org

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