Healthcare collects a lot of data. CAHPS surveys, focus groups, financial reporting, market share. So. Many. Data. Points. So many opportunities for applying those data. Yet, often readers of the data ask: “What does that mean? What should I do with that information?”
Humans want to do the right thing. You want to take the next best step. In healthcare that can mean that you want to deepen engagement with the team, with faculty, with patients. I heard this question nearly every week over many years of listening to and working with teams to improve the experience for patients, families, and the people who served them. Clinical leaders asked me, frontline team members asked me, doctors asked me, administrators asked me.
Often, my response was: “Ask them.”
Reading The Beryl Institute's Human Experience 2030: A Vision for the Future of Healthcare, I was drawn to the Foundational Needs outlined. This one stood out: “Reframe how experience is measured from lagging to real-time indicators, ensuring a holistic assessment of safety, quality, service and engagement to demonstrate the value of care.”
Later Jason describes an action that spoke to the heart of my work over the years: Reframe consumerism to patient and consumer partnership. The request to “transform power dynamics by a global commitment to (1) partnership, where patients, families and consumers are actively engaged in co-design…” led me to write this.
I want to offer you a method for partnership. This is not a step-by-step proposal deeply steeped in the co-design process. I leave that work to others. This article offers some examples: https://uxmag.com/articles/participatory-design-in-practice. Bring in user experience designers who have done this before. They work magic!
I like to say that data informs, and stories persuade. Earlier I listed a few types of data organizations collect. When you look at the results, you’re reading survey percentages, percentiles, mean scores. What comes next? You want to take the right next action. You want to make sure patients, families, employees, feel your commitment to them.
This process helps make decisions informed by end users. It is one way to include patients and/or family members so that your solution integrates their feedback. I would like to help you overcome barriers to trying this method, which in turn will reduce burden placed on patients and families to give feedback and has the potential of improving patient outcomes.
You can find the story, and that story will compel you to act.
I will use a COVID-19 example to bring a process for gathering qualitative insights that complement the problem seen in the quantitative data. You can listen to patients, families, or your team members every day.
They are in your waiting spaces, your cafeteria, your exam rooms, your inpatient rooms. On nearly every day, and in nearly every setting. Or they are a phone call away. Anyone who works in healthcare can talk with a patient on any day they want. Hint: most people answer the phone because their healthcare organization is calling them; it’s not a call they block. Your will, not their availability, is the first step to hearing the story.
Even while living in the COVID-19 pandemic, patients and/or their families are available. They want to help. What I heard from every single patient or parent or family member was that they were happy to give their input and feedback to make it better for the next patient. Hands down. Every single person.
Someone is ready to give you feedback on your problem. In this case, the problem is clear because of a survey result or a recurring patient complaint. It’s based on quantitative data.
Now we’ll look for the qualitative story, set in an example based on COVID.
The overarching problem is defined by the survey; the nuance of that problem comes from the mouths of patients to your ears. Their story shapes your solution.
At the beginning of COVID-19, what’s was most important to patients? Their safety – not getting the virus. What did this look like to them? Was it masks, staying in their car until the room was available, having appointments online? Several organizations added a question to their patient surveys. Many then asked to confirm or better understand patient needs. You can do this with an unlimited number of topics that come up in your myriad of data sources.
Regarding handwashing: What is important about handwashing? Did clinicians wash their hands? Does that matter to you? Why?
For cleanliness: How clean were the rooms? The hallways? In what way? What did you see, or not see, that stood out for you?
For triage: What did you notice about how patients were put into the rooms? How important was it to know there were separate areas for positive, negative, or suspected COVID infections? Why does this matter?
Overall safety: What is important for you to feel safe during this visit?
One family mentioned that they weren’t sure the doctor’s hands were clean because they didn’t see her wash them. This family lives in a multi-generational household and knows to limit contact outside their home. They must keep Grandma Maria safe – she cares for the children while the parents work. This story offers the why for every clinician to wash their hands in front of the patients.
Patients provide the context through an illustrative story that highlights what’s important to them, what they value. They’ll freely share what it meant to them as a patient, or as the caregiver. Their story cuts through the complexity of healthcare, focuses your intervention, and identifies actions that you can replicate across care settings. Consider using their words - best done in cooperation with health educators - to identify plain language for signage and materials. This will help improve health literacy and provide the safe environment they deserve.
Given the decreased number of visits due to the pandemic, we must retain the trust of patients and families during the crisis. They may have to come back for another visit. We want to assure them that we’re doing everything possible to keep them healthy when in our care. We know they will tell friends and family how safe they felt. We need to discover their stories and run with their solutions.
You can you do this. You can approach patients, their families, and team members, to ensure better problem solving. As you try this, please consider these topics: fear; overburdened patients, families, and caregivers; permission; and brevity.
People may exhibit some unease with this suggestion. That’s what I witnessed. I acknowledge that I am an extrovert, but it didn’t seem to just be introversion. People were expressing fear. I soon realized it was they were worried about hearing something they couldn’t fix. Feeling ineffective is hard, for sure. Done too often, it can lead to moral distress, which is an element of burnout in healthcare and a reason why many nurses, doctors, and other people are fleeing the healthcare system. (Source: https://journals.lww.com/ajnonline/FullText/2016/07000/CE__Moral_Distress__A_Catalyst_in_Building_Moral.25.aspx). While this topic definitely needs attention, that is not what I am here to address today. What I invite you to consider is that asking families doesn’t always lead to distress, and it can be the shortest path to hear what they value.
A similar practice – with the related worries – is to give your business card to patients. This story of Dr. Feinberg, that I heard years ago while he was CEO at UCLA, was about leaving his card with thousands of patients. He chose to interact with patients, families and the care teams to uncover solutions. He relied on their partnership and feedback on the potential solutions to the multitude of problems. (source: https://www.beckershospitalreview.com/hospital-management-administration/a-ceo-walks-into-a-patient-room-qaa-with-dr-david-feinberg-ceo-of-ucla-hospital-system.html). He felt those interactions grounded him in his call to serve within healthcare. These interactions may bring you a “joy-in-work” moment – and highlight something that reminds you why you choose to work within this industry.
Another reason to ask patients who are right there in front of you is to reduce their burden of responding to another survey, focus group request or meeting invitation. I had a personal “a-ha moment” when I read this Vox article, “Unpaid, stressed, and confused: patients are the healthcare system’s free labor,” (source: https://www.vox.com/2016/6/1/11712776/healthcare-footprint). Sarah Kliff shares her story about her painful navigation of the healthcare system due to a chronic foot injury. Many of the issues remain valid. I would like to think that most of us want to lessen the burden of healthcare on our patients and families instead of increasing it. Creating a real-time process for gathering input is one way to reduce burden.
A quick story: A child life manager led a team to conduct a trial for a blood draw clinic with autistic patients. They had patients come at a less-busy time of day, reduced lighting, and minimized distractions. She was keen to know what families thought. She called me and asked about how to collect this feedback. I encouraged her to call them, and she did. After doing that, she reached out to share that it was the best 90 minutes she had spent in a long time. She learned so much on how to improve lab flow for the next trial. Joy and a better process.
Ask Permission & Keep It Short
You are ready to try this. Please start by asking permission. Something like, “Do you have a couple minutes? We have this problem and are trying to figure out the best solutions for families like yours. I would like to hear what you think.”
If they say ‘no,’ that’s alright. They have a choice. Thank them for their time. Find another person. It’s best if that person doesn’t look just like you.
Ask your question. You can pose up to three. Listen to their responses. Write down key words and phrases. Show them that their words matter to you. Jot down any non-verbal cues you see.
Set a silent timer and keep it to less than 5 minutes. Respect their time.
Now, ask up to four more people. It’s likely you’ll start seeing patterns, hearing similar words. If you don’t have any repeated answers, ask five more people. If you still don’t have a pattern, you may be asking the wrong questions. Do some reflection: “does this question give me insight into what is important to my users?” and “are they providing feedback on something I am willing to change?” Use your own reflection to revise the question and try again.
Make It Happen
This process can reduce burden on families, even if it’s a tiny bit, and it should identify solutions you could never anticipate. You’re not living the experience from their perspective. It could bring a bright spot to your day. You may empathize more after hearing their stories. It will show that you care about them and value their feedback. It may help them have more confidence to come back next time.
Your problem doesn’t always require patients to do surveys or to attend another meeting. They will share their stories with you IRL. Don’t be afraid. Don’t spend too much time making up reasons you shouldn’t do this. I urge you: ask them when they are right there. And, let me know how it goes!
Ms. Stephanie Hillman is a healthcare leader who has successfully developed and implemented systems that help organizations scale for growth and long-term success. Through the collection of quantitative data and qualitative narratives, Stephanie advises leaders to understand – from the user perspective - opportunities for improvement and to replicate best practices ascertained from exemplars. Stephanie was a founding member of a national pediatric experience collaborative that catalyzed action throughout the US to improve the experiences for patients, families, and the clinical teams who serve them. Last year Stephanie started her own consulting practice called PrairieWood Consulting, LLC, which recognizes her roots from the North Dakota prairie and her professional career in the beautiful Pacific Northwest.