The Art Of Listening: Strategies For Meaningful Patient Engagement

By Carol Chapman, MPH, associate director of research engagement, The Crohn’s & Colitis Foundation

Feeling unheard sucks, particularly when you are talking about something that means a lot to you. I recently quit a local government task force for this exact reason. This group was filled with people who care about our city and were ready to put in the work to make it a better community for all. I am a people person, and being around a group of motivated and engaged individuals ready to take on the problem was inspiring and fulfilling in a way that will keep me speaking up and volunteering for my community forever. So why quit a dedicated group that has the ear of the mayor and city council? You guessed it: They were not listening.

The Importance Of Being Heard

Sure, the mayor attended a couple of our meetings. Sure, the mayor and town council said they wanted to do better. Sure, they even put money toward helping our task force develop an action plan. And yet, two years in, the only tangible proof we have that they take our concerns seriously is the promise to read our action plan, not to even try to implement any of it.

I did not join this task force under the assumption we could fix everything. I joined because I saw an opportunity to share my ideas with people who had a little more power than I do, in the hopes that they could at least hear my plea and, at best, work with me to do better. Instead, I felt like I gave all my ideas to a pile of papers that will sit in someone's inbox for years.

In my role as associate director of research engagement at The Crohn’s & Colitis Foundation, I try to make sure our patient engagement activities do not fall into the same trap. That starts by actively listening. In this article, I will show you the strategies I use to listen, in the hopes it can help you thoughtfully and thoroughly hear your patients — and anyone else you talk to.

Listening To Understand

Patient engagement centers on the idea that patients and researchers must work together to create studies and programs that achieve the best outcomes. There are many different ways to engage patients in research, such as patient advisory committees, co-creating patient-facing materials, and involving patients when setting strategy, but I will not explore all of these now. However, the one thing they all have in common is they all start with listening to the patient.

Active listening is the first step in building trust because it indicates to the other person that you value their experience and that their effort is worth your time and attention. A quick internet search will show several different listening styles, and each style has pros and cons. Here are a couple of websites to learn more, specifically to identify your own learning style: What's Your Listening Style? and What is Listening? Explore them on your own, and understand that one style will not always work for every situation or every person. To build trust with your patients and help them feel comfortable sharing their truth, they must feel that you want to hear what they have to say. They want to know that you value their vulnerability and that you plan to utilize their insights as best as you can. The key is to find the right mix of the assorted listening styles that is authentic to you while still seeking to understand the patient to whom you are talking.

Tips For Becoming A Better Listener

Listening is one of the first skills we learn, and like any other skill, practice is the only way to get better. I am not a listening guru. Honestly, I am still figuring it out myself. I am just someone who values listening, offering some of the strategies that I use when listening to patients. Try some, all, or none of them that work for you.

Reflect

Start by paying attention to the ways you listen and the ways others listen to you — not just at work but with anyone you are most excited to share your thoughts with. How do you know your audience is listening? Are they making eye contact, asking follow-up questions, nodding along, or showing surprise? Those little insights will begin to show you what it means to feel heard. If you find you have not been a particularly good listener, do not put yourself down. Instead, learn from those who make you feel heard and try some new approaches.

Be Authentic

Authenticity helps to build trust, and people have an almost instinctive way of knowing when someone is not being authentic. Experiment with the different listening approaches and use the one that feels most real to you. If it feels real to you, it will feel real to the patient.

Show Gratitude

Even if you are paying a patient, you are still asking them for help. Let them know up front that you are grateful for their participation and make sure they know you value their time and perspective. It does not hurt to mention your gratitude again at the end of the conversation.

Affirm & Reaffirm

Remind the patient that you are interested in their true voice, perspective, and thoughts, not just what they think you want them to say. This helps create a safe space for them to open up. I often say things like "Please explain this to me in your own words" or "There are no right or wrong answers. I want to learn from your experience." This type of encouragement can boost confidence and help someone feel more comfortable sharing their true feelings.

Be Transparent

We all know there are a lot of regulations in research. We usually cannot implement changes right away, and we often are afraid of the patients becoming discouraged if we tell them their insights may not be used. In my experience, this is a myth. Patients understand research is slow, they understand sometimes our hands are tied, and they understand multiple factors impact research conduct. Being transparent about this may be hard in the moment, but the goal is to build trust that lasts for a long time. If you do not tell them the truth up front, they will find out the truth later and will feel confused, even frustrated if their idea did not happen. Be specific in what you think is possible, and let them know what you know. If you do not know something, tell them you will find out.

Honesty and listening are the foundation of trust. It is much better to be an organization that informs its patients of its limitations than one that takes patient feedback and never (or hardly) does anything with it — and doesn’t tell the patient.

Have A Conversation, Not An Interview

Patients are asked a lot of questions. They also likely answer the same questions repeatedly. Instead of asking them questions in a formal and structured way, have a conversation. Even when I am interviewing a patient for a patient advisory committee, I speak to them as if I am learning from them, as well as seeing if they are a fit. Remember, we are not judging their experience or looking for the "best" patient. We are looking to learn from every experience. Here are a few tips to make the discussion feel more personal and conversational:

• Be curious. Ask follow-up questions about their story,  their health journey, and any other aspects you find interesting. If a patient mentions a recipe they like, it’s OK to say that you like that too or ask for the recipe. Reacting directly to what a person is saying in real time helps reassure them you were paying attention.
• Summarize their feedback. This is a reflective listening method. After the patient is done speaking, try to summarize what you heard and ask if it is correct. This not only helps show you were paying attention, but it allows you to reach clarity and ensure you two are on the same page.
• Share a bit about yourself. Most patients are talking about private and potentially difficult topics. Sharing a little about yourself that is related to their story can show vulnerability and openness goes both ways. But, be careful with this one! Do not try to push your view to the center of the conversation.
• Ask questions in different ways. Lean toward open-ended questions. Sometimes the conversation just falls, or you get short one- or two-word answers. The person may be concise, or the person may not have understood the question or just gave a short answer based on the framing. It is OK to prompt for more information. For example, if you ask someone, “How did you feel about participating in our study?,” they may say, “I think it is important, and I enjoy participating.” Instead of leaving it there, ask a follow-up question such as, “That is great. I’m glad you found it valuable! Can you tell me which parts of the study you liked the most or think others would also find valuable?”

Assume Patients Are The Expert

This may be the most important tip when it comes to listening during patient engagement efforts. People who work in research are highly intelligent with a deep understanding of the research cycle, and that creates a power imbalance in discussions with patients. I try to make it clear to the patients that their experience is just as valuable to our research as any other stakeholder. We need their insights to make truly patient-centric studies, which means they are the expert. I enter every conversation as if I am talking to someone I admire. I am looking to learn from them, so I am going to pay attention and seek understanding.

To Wrap It Up

Research, like city government, has lots of regulations and red tape that make it slow to change and hierarchical in nature. This does not mean that our research teams must be as cold and bureaucratic as I’ve encountered with local leaders. Our patients are sharing their stories, their life lessons, and their experiences to help make our programs better and reach goals that benefit everyone. The least we can do is lend a listening ear. There is no hack to being a good listener, no specific number of head nods that tell the other person you understand. Instead, it takes practice and compassion. Luckily, listening is not exclusive to patient engagement, and you can begin using skills now at work and play.

About The Author:

Carol Chapman, MPH is the associate director of research engagement at The Crohn’s & Colitis Foundation. She uses her background in clinical research coordination and public health to develop and implement new ways to engage patients in all research activities. She works to include diverse patient voices as experienced leaders who can help research teams provide more value to their participants. By engaging patients early and often throughout the research process, she aims to build trust, improve recruitment practices, and increase adherence to study activities. Before joining the Foundation, Carol worked in the hospital, community, and digital health technology sectors where her work focused on patient recruitment, diversity in research, and building trust in groups historically harmed by medical research.