A few months ago, I received a call that would stop me in my tracks: would I like to share my thoughts on what defines a quality gastroenterologist at this year's Digestive Diseases Week (#DDW2018)? I think that I said "YES!" before the question was even finished. I was so excited that I got right to work. In some ways, I knew exactly what I'd want to say, but in a lot of other ways, I struggled to find just the right words. From a patient's perspective - or at least THIS patient's perspective - a quality GI is the keeper of the keys to the bridge from simply feeling better to a life lived full and well. A quality GI isn't just the woman or man with the right script to write, it's the partner in my quest to succeed and thrive in the new world that this disease has left me with. Exactly how would I put that into simple points and phrases for an audience of Gis?
I'll also add the fact that I would be a patient speaking on a panel of industry "experts" when such seats are typically reserved for the "degreed," not the diagnosed. So... no pressure. But, patient-driven quality of care is a topic that is near and dear to my heart, so I was up for the challenge.
Because the topic really requires thoughtful time and care, I've summarized my speech here to continue the conversation. I want to acknowledge that I was asked to speak on my view of a quality GI, so some of my thoughts may differ from others. I did, however, work very hard to define global characteristics that l have seen in quality services in the hopes that, sitting in the audience would be a GI who would be touched by my words and choose to apply some of what I was sharing in their next appointments with their patients. That was my goal: to define qualities that any GI can choose to take on as they work with their patients today, tomorrow, and everyday.
To mix things up a bit, Alandra Weaver and I chose to present information in an interview format (Alandra is the Director for Quality Improvement at the Foundation).
Defining A Quality Gastroenterologist
1. How do patients typically make decisions when choosing a provider? Do you think that they rely on things like patient reviews or physician report cards to help them find a quality GI?
This is a great first question – how ARE patients finding their quality GIs?
There is likely to be a lot of variation in a patient’s journey, but I think that we can talk here about patients who are new to their disease and healthcare in general, and patients who have experienced their disease and the system and are looking to find a more personal fit with their clinician.
New patients – the ones who are new to chronic illness and the type of clinician-patient relationship that is needed to maintain health while managing a life-long illness – may first find their way to a clinician by referrals from other medical professionals, their insurance company, or simply based on geographical location. But does this ensure that they find a quality provider? Not typically. Many of us see many different clinicians before we settle on one that meets our unique needs.
As time goes on, most of my peers and I follow references that other patients or professionals in the field suggest as being the best to help us find the type of care that will meet our unique needs. Sometimes, the IBD community will hear from an unwell patient who doesn't appear to be receiving adequate care, and we'll make recommendations. Other times, patients may reach out to other patients in person, through social media, or sometimes because our email address was passed along to them, and they'll ask who we see, because they'd like to be in a supportive clinician/patient relationship like the one that we have.
When I give a referral for a quality GI, it’s typically based on how that clinician has approached appointments, given serious attention to my goals, and how they made me feel - defined below.
2. In what ways can a gastroenterologist provide quality services to a new patient joining their practice?
Quality services take place in every interaction between the patient and the clinician's office. When scheduling, calling for a medication refill, or when sitting in the office with the clinician, all staff interacting with the patient should maintain a similar patient-centered mindset. For better or for worse, a clinician's quality is often impacted by the entire experience of the patient with the office. And why shouldn't it be that way? Often, patients spend more time dealing with the clinician's support staff than with the clinician - so quality GIs should care about that entire experience for the patient.
Clinicians should support multiple methods of access for the patient. Those with a life-long, chronic illness may experience symptoms that impact their quality of life on a varying scale. Not all symptoms require a trip to the clinician's office, but that doesn't mean that they don't impact that patient's day-to-day life. In this case, patients should be able to reach out and receive support in a multitude of ways that support their lifestyle, opting in to what works for them. Similarly, urgent needs necessitate a clear mode of accessing the patient's clinician. Types of access should be communicated to the patient often and easy to navigate.
Patients should receive timely responses to questions or needs. Quality clinicians and their office staff should have processes in place to triage patient needs and ensure that patients receive answers, etc. when they need them. This type of reliability from my clinician and the office also communicates to me how seriously and consistently I should be managing my disease, as well.
3. What key qualities bring the most value to your appointments with your gastroenterologist?
A quality GI has to listen to me to make teamwork happen. I have to be heard. No assumptions, and please ask further questions to understand my experience in the fullest way possible. An interest in finding a solution that is going to support my day-to-day life, financial abilities, and allow for flexibility as I reach goals and set new paths in life requires an understanding of my personal experience with my illness. Especially when planning for the future.
And please, believe me. Ask questions and try to understand my experience because I expect you to consider my experience to be valid and real. I'll likely know when you don't and it will come out as a feeling of distrust in your care.
A clinician committed to providing quality services is interested in my continued education. I want to continue to learn about my disease. When a test is run for the first time, I want to understand why - what is the logic behind it? If I use the internet, I want to be supported as a patient who is just trying to maximize available resources that may support me to find strength and confidence to manage my own disease. Make suggestions of the best sites to use, don't shut me down. There is a lot to be said for supporting a patient in their independence. We can have a conversation about the internet that is caring, professional, and supports me as a mature adult.
After consulting with me on my experience, please be prepared for my appointment. I want to know that you have reviewed my case and have access to my latest labs and services. You should know my diagnosis when you are sitting and talking with me. Your preparation will set the tone for how prepared I should be arriving at each appointment. As your patient, it's important that I maximize and smartly use our limited time together by being prepared, so model this behavior for your patients.
Are we working together? Clinicians who join forces with their patients to establish patient-centered treatment plans driven by goals that are defined by the patient's experience are key to reaching deeper levels of quality care. I want to feel that you are working with me to make care decisions together. Ask me what my goals and concerns may be. Let me define some levels of my treatment. It's not just about seeing a low iron level on a blood test and then assuming that the issue is resolved as soon as the levels rise, for example. It's understanding what anemia feels like for me and then considering our goal met when I get back to where I want to be. This may mean that we move at a different speed from time to time as I have some input over our treatment plan, which will require some flexibility on your part. Help me dream of how I may set treatment goals to maximize my level of wellness if I don't have an idea of main goals or concerns.
Lastly, get excited to invest in our relationship by getting to know me as a person. Even if it's just a quick 30 - 60 second question/conversation about something going on in my life outside my disease, it'll make all the difference. I've been with my current GI for 9 years. Together, in addition to squashing many flares, my GI and I have celebrated my career advancements, engagement, marriage, first home buying experience and house-repairs, two children and a master's degree. That's a lot of celebrating in addition to working hard each time my disease tries to take charge of my life. It brings a great balance to our interactions.
4. How can providers best support their patients to take on a more active role in ensuring that their health needs are met?
For lots of clinicians and patients, taking on a more active role in their care is important. This isn't the case for all, though. In fact, what "active" or "involved" may look like will vary greatly person-to-person and a patient may even desire varying levels of active involvement based on how they're feeling or how life is treating them at the moment. This is impossible to guess, so investing in your patient-relationship, as previously mentioned, really lays the groundwork for having these types of conversations with your patients. Quality GIs are inviting patients to define and deepen their levels of active engagement in their care.
As I've become more engage and active in my care, I've learned to switch from reactive responses to symptoms of my disease to proactive strategies to get in front of some common triggers or issues. While this will never be perfect, and I'll always encounter new situations and symptoms, having a "bag of tricks" to manage my disease has allowed me to achieve more and take on new activities in life that previously seemed impossible. Taking on an active role in my care also helps me take back some control from a chronic illness that sometimes wants to control me.
Current quantitative quality measures are necessary. Patients expect that their clinicians are engaging in safe, up-to-date care practices as defined by the medical field. But, that's not enough. Patient-driven qualitative measures need to be considered. Luckily, this is pretty easy to gauge: simply ask your patient. If you can't answer the question, "am I providing quality services as my patient would define them?" then you should be working on deepening your patient-clinician relationship in this direction. This shouldn't be considered a static achievement: every interaction with your patient can deepen the quality of your care when you're both committed to this type of outcome.
Rome wasn't built in a day, and neither will a successful patient-clinician relationship be, either. But that doesn't mean you don't try, and a quality GI is teaming up with their patient to try to achieve these goals. Is your patient coming back because of some external reason that makes them feel that they have to (insurance, geographical location, etc.), or are they seeing you because they don't want to be treated by anyone else? This distinction matters. Try to find out the answer today.
It was such an honor to speak at this year's DDW. Every time a patient is invited to provide their prospective, it only deepens the medical world's commitment to advancing care. I can't wait to see more patients involved in driving care and research in the future. Thanks for reading!