Abstract
A wise old owl sat on an oak; the more he saw the less he spoke; the less he spoke the more he heard; why aren’t we like that wise old bird?
In 2010 the Affordable Care Act was enacted with the intent of making health care more accessible and more affordable with better patient experience. Like many of you, I have been listening to the noise in DC and at the state level and watching this dance of everyone involved in health care reform. While patient experience is supposed to be one of the triple aims of health care reform—the best care, at the best value, with the best patient experience—I can’t help but wonder what will happen to our patients when the dust settles. It all sounds good for the big hall talks, the ones that get national TV coverage. Yet, how often are people with chronic disease at the table? How often do patients really get to contribute to the solutions?
When my colleagues and I talk about our hope that our patients don’t get lost in the rhetoric, we all ask ourselves if any of our decision makers understand what it takes to successfully live with a chronic disease like diabetes. I wonder what they would say if they met Ann, who has diabetes and is the author of this issue’s Patient Story. In our effort to listen to our patients and to live out our commitment to being more patient-centered, we are inviting people affected by diabetes to share their stories. Our goal is to give people with diabetes a voice because, unlike what our legislators and some care providers seem to think, we can’t speak for our patients. We can’t know what they want or need unless we ask and then listen to them. People put their lives in our hands every day, and in the words of Sister Mary Jean Ryan, CEO of the SSM Healthcare System, “this is not a job, this is not a career, this is a sacred trust.”
Ann wants you to know her story. Ann has had diabetes since childhood and she speaks of her reality of living with diabetes and specifically neuropathy. You can feel her pain, yet she has found a way to live a full life in spite of it. Your heart will go out to her as you read her story. We can’t take away the tough hand she was dealt, but we can help support her. Her advice to diabetes educators is “Don’t blame them for these problems, appreciate they may have not done great with their control but they are probably doing the best they can do.” Thank you, Ann, for sharing your story with us. And if any of you know of someone else who may be willing to tell their story, let us know.
Being patient-centered is especially difficult in the current health care system. We are paid based on volume and are expected to see most of our patients in groups. The danger in doing groups all the time is getting stuck in the rut of delivering the same set of slides class after class. With that approach, even the best diabetes educator can get boring. Amber McCulloch talked with Shelley Mesznik, Joe Solowiejczyk, and Barb Schreiner about their experiences with group education. They are all educators who talk about being focused on the people in the group and not on the slides (if they even use them anymore).
As Joe Solowiejczyk says, “Even if you are leading a specific educational session, and not a support group, psychosocial principles must factor into the educator’s planning. So much of diabetes management relies on behavior change, and no amount of lectures will get people to change behaviors.” I’ve seen Joe in action. He has a way of drawing people in and having a conversation with a roomful of people. The magic is about making the whole experience relevant to the people in that group on that day. Having that kind of engaging interaction can be more effective than a one-on-one visit. As Shelley Meznick states, “Conversation can generate real behavioral change when the diabetes educator engages patients in the behavior change process and uses group dynamics to encourage participants to help teach each other.” The group will often problem-solve for one another. The diabetes educator is there to facilitate the process, not to be the talking head.
But groups are not for everyone. Barb Schreiner reminds us that “every individual is different. Some are more private and do not want to disclose in a group, while others need that social interaction and thrive in a group dynamic.” According to Medicare, we have to provide most of our diabetes education in groups, but that does not mean sacrificing a patient-centered approach. That part is up to us.
And speaking of patient-centeredness, Ruth Lipman offers a definition and explanation of Patient-Centered Outcomes Research (PCOR). Out of the quagmire of the Affordable Care Act was born the Patient-Centered Outcomes Research Institute, which defines PCOR as research that “helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options.” Lipman also writes about Comparative Effectiveness Research (CER), which is defined as a study that compares the results of one treatment to another for managing a problem. She describes how we can use findings from both of these types of research to help our patients make better, more relevant decisions for their situation. Most of us are not researchers, but we do rely on the research to support the information we provide our patients. It is good to know this is being made a priority.
Cindy Halstenson discusses diabetes neuropathy and physical activity in Food for Thought. She also reminds us of how important it is to keep the patient’s lifestyle in mind when offering suggestions. She suggests finding things that resonate with the patient, such as for the older person, “being physically active will help you maintain the strength you need to get your groceries from your car to the kitchen.” Seems so simple, yet it is those little things that can make the difference between connecting behavior change to real-world benefits for the patient (motivation!) and not.
In this issue’s Capsules article, Jerry Meece grapples with the research regarding statins potentially causing diabetes. It has been in all the diabetes publications, but it is still a controversial issue. Meece deciphers the studies and helps us sort through it all.
In Mindsights, Joe Nelson gives us a look at health coaches, a new member of the diabetes care team. He points out that there are no standards for the role, so it is difficult to know what they do or how they fit with the team. I have seen health coaches being used in frontline care, on phone lines, and in community settings. Their skill levels and backgrounds run the gamut. Nelson points us to the AADE Competencies for Diabetes Educators. It may help you figure out where your health coaches fit in your program and how to better work with them on your team.
In an effort to listen to our patients and to live out our commitment to being more patient-centered we are inviting people affected by diabetes to share their stories.
Our other feature this month is about how some of our entrepreneurial colleagues have struck out on their own—with tenacity and pure hard work. You will see how the three educators have succeeded in running their own businesses. Gary Scheiner puts it this way, “You need to be prepared to market and sell yourself and your services, balance a budget, deal with human resource issues, and develop some business savvy.” Sandra Bollinger and Dana Armstrong agree. Each of them came to this place in their career for different reasons, but all concur it is the right place for them now. If striking out on your own is something you have toyed with, you may find their tips and the lessons they have learned along the way helpful.
This issue’s Educator in Practice article features a team of educators. With the support of their leadership at a large integrated health system, Mary Frederick, Julie Emerson, and Janelle Duffy work as mentors and coaches to primary care physicians (PCPs) who are low performers on the comprehensive diabetes measure in their care system. The focus is to help these PCPs improve the care of their diabetes patients and raise their scores. These 3 seasoned and well-respected CDEs and their outcomes will be published in The Diabetes Educator. Since we all have worked with a few providers who are not as adept at managing diabetes as we think they can be, I think you will find the strategies discussed to be both challenging and tempting to try.
And finally, this issue’s Reflections is a personal favorite of mine. I will let it speak for itself, but I hope it inspires you to share some of your own reflections.