Ask any provider organization what is at the center of healthcare and you’re bound to hear, "It’s the patient." But in reality, there is often a gap between new innovations and that patient experience. 

“They always say our innovation is driven by patients or patients are put at the heart, at the center of what we do. But when you take a closer look and at it sometimes what you see is these are just buzz words and they have a vision but they don’t have an action plan yet,” Stefanie Veraghtert, director and founder of The Big C, a social enterprise about health awareness and empowerment, said at HIMSS Europe. “I must say it is not easy to organize patients together, and it is not easy to transform their patient experience into policy recommendations, or design thinking, or being in a patient journey debate.”

Now patient advocates and providers alike are finding ways to prepare organizations to develop technologies with patients at the core. While these conversations have begun, there is still a long road ahead. 

“There is still a lot of work to do. People are still telling us access isn’t right, convenience isn’t right, it is still too difficult to navigate the system. So that is the future work,” Adrienne Boissy, chief patient experience officer at Cleveland Clinic, said at the Patient Experience Summit in May. “I think the challenge for organizations is get clear on standard work and what you should be doing that is non-negotiable for patient experience.”

Putting it in practice 

Turning to patients for input is a common strategy that is helping hospitals and startups prepare their new technologies. 

“I think we should involve [patients] much more, but also invest in them and in skill building and making them equal partners to sit around the table at an equal chair because they are the most important ones,” Veraghtert said.  “They are the end users for the products and services. I really feel we tend to forget that easily.”

This process of turning to patients for advice can look different in every organization. For example, at Northwell Health system, the digital strategy team first went on a so-called listening tour. 

“There are so many things that call for your attention,” Emily Kagan-Trenchard, VP of digital and innovation strategy at Northwell Health, told MobiHealthNews. "And when we first started we really did the solutioning work and we started not just looking at the patient data, for instance the Press Ganey results we’d be getting back, but actually interviewing patients, working with our patient-family advisory council, really listening to staff.”

While using the newest and “shiniest” tech on the market has an appeal, Kagan-Trenchard said the team was struck by the simplicity of requests from patients and providers alike. 

“So for us, that listening tour of our patients and our staff made us realize there’s some basic and fundamental things that we need to do first,” Kagan-Trenchard said. “As I said before, everybody is super excited to build the stuff that’s like rocket science, but what they don’t realize is first you need a launchpad. And in a lot of ways when it comes to digital technology, we haven’t built that really strong foundation, that launchpad from which to do all of the other cool stuff.”

While providers agree that listening to patients' experiences is important, doing it right is an extremely time-consuming pursuit.

“It is important for us to hear from enough patients because from a methodological perspective, one of the challenges is that patient stories sample sizes tends to be small because it is very time intensive to collect stories. So, the question is whether it is representative,” Lee Chen Ee, group director of organizational transformation at Singapore Health Services, said at Cleveland Clinic’s Patient Experience Summit. “The same experience viewed from one patient’s lens is very often just one side of the story and sometimes may not be entirely accurate. So, we need to get enough stories for the purpose of validation.”

Patient Panels 

Meanwhile, other health systems are employing formal patient panels to prepare for their next tool. For example, in the past UCB and Partners Health teamed up on a tool to help patients with epilepsy. Instead of creating the tool straight away, they first went to the patients. 

“We didn’t want it to be where patients are involved or asked. We actually wanted patients to lead. So right off the bat, what we did was create an advisory panel. Our advisory panel was composed of a patient, a patient advocate and a provider,” Dr. Kamal Jethwani, senior director of connected health innovation at Partners Healthcare, said at Mad*Pow's Health Experience Design (HXD) Conference in 2018. “This advisory panel was charged with leading what we do and how we do it on this product. So, we were going to lead the process, but they were going to lead the content.”

A patient’s perspective could be essential to helping innovators figure out what will work and what those developers are missing. 

“When I look back at my own patient experience, [I] can easily say what the needs are, and say what a new product or new app is not really matching our needs," Veraghtert said. "And it is important to connect the dots and give these needs to the policy makers or to the designers or to the engineers or to the IT-ers [so] that they adapt these services to our need."

But it isn’t just about a single patient panel or a listening tour. Boissy said it needs to be part of an organization's larger, well-defined plan. 

“We have to dream the strategy. It won’t be perfect, [but] map that strategy, objective and key results. What five things is patient experience going to own and deliver on that are tied to numbers, key results, not amorphous,” Boissy said. “I think that would help focus us all. Then you could say to people, ‘I understand you think you have 18 priorities. Actually, the organization has agreed on these, so please stop what you are doing over there it is not connected to the strategy. We are going to work on this. Come join me.’”