The patient voice isn't just important for shaping care management; it's also important for designing the tools that assist with that care management.
Healthcare's digital transformation means there's a growing suite of tools, such as patient portals or online provider search and appointment scheduling systems, that directly serve patients. Getting patients' user intel about how these systems work can give designers the insights necessary to make improvements.
While health IT companies might conduct extensive user testing and focus grouping, adding PFACs is new territory for most developers. How are health IT vendors approaching this new world of patient feedback?
Understanding PFACs
PFACs "offer a forum for researchers to obtain ideas, input, and insights to guide research projects," according to the Institute for Patient- and Family-Centered Care (IPFCC). "PFAC members bring their experience in partnering with healthcare professionals and sharing their unique perspectives."
PFACs usually comprise patients, family members and other caregivers who have extensive knowledge of the hospital and healthcare experience. They meet regularly to provide feedback and counsel to healthcare organizations regarding various projects.
Most hospitals and health systems laud PFACs as they continue to prioritize patient-centered care. Through their counsel, PFACs can help organizations augment their strategies to ensure a good patient experience by considering authentic patient feedback. In fact, PFACs can be so valuable to hospital operations that the state of Massachusetts passed a law in 2008 mandating all of its acute and rehabilitation hospitals to have one.
But if you were to do an online search for PFACs and health IT vendors, you might come up empty.
Health IT vendors creating PFACs
It isn't always easy for health IT companies to access the patient voice during the design and development process. Vendors aren't necessarily selling to patients themselves; they are selling to hospitals and health systems that will use their technologies in patient care.
There could be other hurdles, like helping patient advocates learn and understand the complexities of computer programming, business and technology before providing their feedback.
Because we're creating the technology that patients are going to use, we really push for hands-on feedback directly from patients.
Trevor BerceauResearch and development director at Epic
Or perhaps it's simply the challenge of getting a representative group of patients and family caregivers together to provide their feedback. It is easier for hospitals to create a representative PFAC because a hospital's catchment area is typically much smaller than that of a health IT vendor, especially if that vendor sells its tools nationwide or even globally.
Some health IT vendors are turning those narratives around by creating their own PFACs as key tools for improving the technologies health systems use to serve patients.
"Because we're creating the technology that patients are going to use, we really push for hands-on feedback directly from patients," said Trevor Berceau, a research and development director at Epic.
Epic says it has a PFAC as a part of its wide-ranging efforts to incorporate patient-user feedback.
Again, this approach to patient-centered care isn't dissimilar to hospitals and health systems, according to Karen Conley, DNP, RN, who heads up the PFAC at patient engagement technology provider Kyruus Health. She knows this from her days working on the administrative side of things at health systems.
"With my whole clinical team, which consists of about five people, we understand PFACs because we worked in health systems and health plans and understand how important that is," Conley, who is also senior vice president of clinical services at Kyruus, said in an interview.
PFACs can be tasked to assess any number of issues with a technology. A vendor might solicit unfiltered feedback for a product, while in other cases, it might be looking to learn whether a tool is usable, whether different parts of the interface are intuitive or even whether everyone can access the technology.
"We have to make sure that we're building our applications so that they work for as many patients as possible, and that includes patients who are visually impaired and take advantage of screen readers to use the software," explained Sean Bina, vice president of access and patient experience at Epic.
"We do a lot of testing around our software to make sure that it's going to be super accessible and work well for patients, whether they're visually impaired, whether English isn't their first language or whether they read at a level lower than fifth grade."
Conley said Kyruus' PFAC helps fill in the gaps in terms of what a patient would want in their technologies. This ranges from usability all the way to answering strategic questions for the company, like whether Kyruus' provider search filters should include certain sociodemographics.
PFAC onboarding and education
Health IT vendors need to work overtime to support their PFACs. The patients and family members involved in the councils might be experts in their own healthcare experiences and even key aspects of the healthcare industry itself. But seldom can they add the triple threat of health IT expertise, too.
"We provided a whole in-depth orientation for them, so they knew about our products and our strategy. Now, every meeting, we're building on that," Conley explained.
Since starting its PFAC, Kyruus has created a learning management system where the company can contribute new PFAC-facing features as it adds to its offerings. Council members can refer to the learning management system to review factors related to the technology or the company's mission.
This background information made it easier to contribute during PFAC meetings, according to Denean Greene Rivers, one of the Kyruus PFAC members.
"We had a crash course on Kyruus and the background of Kyruus, the naming of the company, the mission, the vision statement and all of the core values," Greene Rivers said during an interview. "The development of new products was shared, but they also shared existing products, and they gave it to us in a way that was bite-sized pieces. It was quite digestible."
And that's on top of the high engagement from PFAC members themselves, Greene Rivers pointed out.
"Because we are users of a lot of health information technology, we did our due diligence," she added. "There wasn't really anybody that I'm aware of to come on to the PFAC without doing a little bit of background digging."
Epic takes a different approach to PFAC education.
"Typically, it's built into the conversation," Berceau explained. "Here's the context, the problem that we're trying to solve and here's what we're thinking about doing or here's what we've done that we want your feedback on."
The company also does what Berceau called "task-based usability testing" in which it asks a user to perform a particular task within the technology. The Epic facilitator will then watch the user complete the task, which can provide insights into whether the system design is intuitive or how long it might take a user to complete a task.
But as most folks in healthcare know, it's not just what the patient knows about medicine that affects their perspective. A patient's background and culture will also impact how they engage with a health IT system.
Diversifying patient insights through representative PFACs
For both Kyruus and Epic, making sure developers could gain access to diverse patient perspectives meant building a representative PFAC. After all, surveying just one type of patient won't provide the rich insights necessary to build an effective tool for a broad user base.
"It was really important for us to have representation across the country, living in rural areas, living in metropolitan areas with different ethnic backgrounds, with different health experience backgrounds," Conley said.
Kyruus works with a third-party organization called Patient and Family Centered Care Partners (PFCCpartners), which helps connect various industry players with patients and family caregivers to populate a PFAC. PFCCpartners has worked with federal agencies like CMS, the Agency for Healthcare Research and Quality and the National Academy of Medicine.
Its collaboration with PFCCpartners has helped Kyruus build its PFAC of eight patients and family caregivers from all over the country.
Epic said it emphasizes diverse patient feedback similarly because its primary patient-facing tool, MyChart, is used globally.
It was really important for us to have representation across the country, living in rural areas, living in metropolitan areas with different ethnic backgrounds, with different health experience backgrounds.
Karen Conley, DNP, RNHead of PFAC and senior vice president of clinical services at Kyruus Health
"It's important to have a diverse group of users, whether you're dividing your patient advisory council into different sections with different focal points or just bringing a really diverse group of people together," Bina said.
Epic often meets with the PFACs of its health system customers and has gathered the insights of patient end users nationwide, but that's not the end of its efforts for diverse patient feedback.
"The patient family advisory councils are a really important piece of it, but just one piece of the puzzle," Berceau stated. "If we only focused there, we would miss out on some of those other perspectives."
"You can't form a great advisory group of people that come forward and volunteer because they tend to be the patients who either have the most problems or are the most tech-literate, and we need to go beyond that," Bina added.
Epic requires every one of its developers, testers and designers to spend a set number of days onsite in a healthcare facility to immerse themselves and speak with end users -- including clinicians and patients -- about Epic's technologies. The vendor said it can't get diverse patient feedback with a PFAC because not every user will have the time, resources or desire to participate.
On-site immersions help Epic's developers get even more granular with the typical patient experience with a tool.
PFAC insights in action
Greene Rivers, the Kyruus PFAC member, said advisory meetings can have a huge impact because she and her peers see their insights become a reality.
"Overall feedback, being able to be integrated into policy, procedures or the product line, is important because once you bring the consumer's voice in, it helps to accelerate patient engagement," she said.
Both Epic and Kyruus have said their PFACs and other patient feedback mechanisms have inspired improvements to their technologies. For example, Kyruus' PFAC helped it refine how the company displays quality scores on provider profiles.
"Our PFAC really didn't understand quality," Conley recounted. "There are these random four-star ratings, there are all these quality scores, and we have no idea what they mean. It's not helpful for us if we're on a health plan website looking for care."
That led Kyruus to create a separate button outlining how it arrived at a certain quality score and what the quality score meant. Even still, the PFAC had constructive feedback.
"One of the patients just said, 'I don't know what that means, I don't think I would go there naturally and click on that button to get more information about that score,'" Conley explained.
After more workshopping, the Kyruus team was able to create a more descriptive label to help patients access the quality scoring methodology.
There's a difference between getting patient feedback and getting quality patient feedback, the tech experts agreed. Health IT vendors need to be strategic in how they engage their PFACs to ensure the insights they get are actionable and can guide the company moving forward.
"It's really important to split input out into the different phases," Berceau suggested.
When defining and understanding a problem, a company will approach the research phase differently than the design phase and the hands-on usability testing phase.
"Understanding that there are different audiences that you go to and different techniques, from card sorts to interviews to task-based usability testing, is certainly an important piece of it," Berceau continued.
This mentality helps guide whether and how Epic engages with its PFAC or another part of its user feedback network.
Receiving user feedback from a PFAC has been an invaluable experience, representatives from both companies said.
"A patient family advisory council is not a focus group. It's totally different. It's a group of expert advisors who are trained and understand the products that you build, the people you're trying to serve, your corporate strategy," Conley stressed.
"You could have great people designing and testing things, but unless you have those native users or those actual patients and families that are using these tools, you are potentially missing something that you could improve on."
In fact, it's the success of PFACs that has helped cement them as a core part of the digital strategy at Epic.
"I don't think I have heard of a single development team that has taken a project to our patient advisory group and not come back saying, 'Wow, that was really useful,'" Berceau stated. "'We got some new insights that really improved our understanding of why this is going to work so well or changed the way we're going to tackle this particular problem.' That type of story tends to help keep the momentum going."
Those success stories might have broader ripple effects as health IT companies continue to center the patient in their core design and development strategies. Understanding the value that the patient voice brings to the research, design and testing phases could be integral as healthcare continues its digital transformation.
Sara Heath has been covering news related to patient engagement and health equity since 2015.
