Amplifying the Patient Voice and Responding to What Patients Say

The patient voice is becoming more important as healthcare moves to a value-based, patient-centered system of care, but just amplifying the patient voice is not enough. There needs to not only be amplification, but also a constructive response from the health system, said Thomas Lee, MD, chief medical officer at Press Ganey, during his presentation at the National Quality Forum Annual Conference.

According to Lee, there is a historic challenge in healthcare that has nothing to do with Obamacare or Trumpcare but instead, has to do with the reliability and coordination of care and change related to medical progress and an aging population.

“When we’re talking about the patient’s experience of care we’re not talking about something that’s not core to quality of care,” he said.

Patients don’t necessarily care about how reliably a provider performs a test that the patient has no interest in. Patients care most that providers are reducing their suffering and that there is coordination of care and compassion.

“If we do it right and we do it efficiently, I think we’re on the way to a better system,” Lee said.

He then moderated a discussion with Marc Boutin, JD, CEO of the National Health Council, and Sally Okun, RN, MMHS, vice president of advocacy, policy, and patient safety at PatientsLikeMe.

Stories are critical, both Okun and Boutin said, because behind every piece of data is a patient story, and without that story, the data are meaningless.

“You’ve got to understand the data, and you’ve got to understand the story behind it,” Boutin said. “The population-level data gives you a great starting point, but if you can’t drill down to the individual, you will not get it right.”

Co-designing quality measures with the patient is an important shift that needs to happen, he added. Including the patient more in research is already occurring, and it’s also starting to happen with the development of new inventions, but the practice has been relatively slow with quality measures.

“Until we get there, we will have incredible waste in the system,” Boutin said. People will walk away after getting care and feel they didn’t get what they needed and that no one was asking what they wanted.

PatientsLikeMe has been working on a project that asked patients a simple question: How would you define good care? They took the responses and separated them out based on themes.

“Overwhelmingly, it came down to relationships,” Okun said.

She added that patients reported that the things that were most important to them when getting care were: genuine listening, eye contact, familiarity, respect, and not feeling rushed. While clinicians would love to do all those things, time is the biggest challenge facing them. Okun suggested letting patients help. Patients want to know their role on the team and what they can do to help achieve the results they want.

During Lee’s presentation, he explained that there are 3 important questions to answer: Why? How? What? Okun brought those back into the conversation and explained that the most common questions patients have all start with “what.” For example: “What do I need to do to live with this disease?” What follows is something like “how can I integrate that into my daily life?”

“If we can answer those ‘what’ questions for them, that will satisfy the ‘how’ and the ‘why,’” Okun said.