SALLY OKUN, R.N., spent 25 years caring for patients during their most vulnerable times — in hospice, palliative and end-of-life care. Having "kitchen conversations" revealed that patients and clinicians often speak a different language. As vice president for advocacy, policy and patient safety at the social media site PatientsLikeMe, Okun is passionate about giving patients a voice. | Interviewed by Matthew Weinstock

When did you start to see the disconnect between how patients and clinicians communicate?

OKUN: In the late '80s and early '90s, I was working simultaneously in an inpatient hospital setting and a comprehensive cancer center. I was seeing both ends of the spectrum. It was clear to me that patients in the cancer center really lacked a lot of insight and knowledge about what lay ahead of them. Then I'd find people in the hospice environment who would say, "I wish I had known some of those things. That would have shaped some of the outcomes I am having." It felt as though there was this gap between those two experiences.

How does that background fuel what you do now?

OKUN: What PatientsLikeMe does really well is meet the needs of people who are not well-served by the medical community. Often, we have patients in our system who haven't quite found a place to get answers to the questions that they have about living day to day. "What's it like to live with multiple sclerosis on a day-in-day-out basis?"

There are lots of other things that people need to learn about modifying their lifestyle or being able to manage side effects — the kinds of things that other patients have insights into. PatientsLikeMe is really filling that gap and helps people to have conversations with other people like themselves … and enhance their learning a bit more about the questions that they may want to bring back to their own clinicians.

Who should lead in filling that gap? Patients? Clinicians?

OKUN: It is a combination. We have an opportunity to engage patients very differently in how the medical and health care system can help them live well with illness. So often, particularly in the hospital setting, it is easy to forget that people leave and go somewhere else because you are so busy and focused on what you need to get done. We need to recognize that some people go back to a home or social environment that may influence their ability to have positive outcomes. It is important for patients to have the kind of interaction with their clinicians that make a difference in whether they can achieve the outcomes that are expected of them.

You talk a lot about changing the language used to communicate with patients. Why is that important?

OKUN: I spent a lot of time in community-based settings. My conversations were with real people in real places — those kitchen conversations. I had to figure out ways of communicating effectively with them, so I learned to ask questions that gave me insights into what was on their minds.

There are two key questions that I always felt helped me to get a better sense of where I might need to go and the language that I use. They are both simple: "What's on your mind today?" The other, especially if I were going into a home and seeing someone with some regularity, "Did anything keep you up last night?"

Often, people's responses wouldn't have anything to do with our clinical situation. It really had to do with their quality of life and things that they were worried about. It allowed them to tell me, in their own words, what was on their mind, and it gave me something to work with. They allowed me to share their language and speak it back to them.

In the hospital setting, that's challenging because the patient is in a foreign environment and less likely to feel comfortable. If we can begin asking those questions, they open the door a little bit — but be prepared for the fact that the answers may not have anything to do with what's on your clinical agenda.

Do you think breaking down the language barrier is key for concepts like shared decision-making to succeed?

OKUN: Exactly. That brings us to an equation that I often think about: Shared data plus share decision-making equals shared accountability. We've never really given patients an opportunity to share their data and perspectives in a quantifiable or qualitative way and use them effectively. We listen to what patients say and we even capture it and put it in quotes and subjective assessments in our clinical documentation, but a lot of times those data don't go anywhere.

Patient-generated health care data are becoming ubiquitous, whether it is PatientsLikeMe or a FitBit or any other kind of monitoring device. We need to find a way of bringing that data effectively into the point of care with the clinician.

Have you looked for ways to connect to that patient data?

OKUN: We participated in a demonstration the past two years with the Department of Veterans Affairs in San Francisco in working with veterans who had brain injuries that resulted in epilepsy. We developed measurements so veterans could measure their seizures and epilepsy conditions on their Patients

LikeMe record and then bring that into the clinical encounter. We are just finishing up that project. I think the veterans found a lot of satisfaction in that experience. Instead of someone saying, "How have your seizures been?" the veteran can say, "Here's how they have been. I can show you."

Expanding and scaling that requires us to think about the conundrum of clinicians' saying that they can't deal with more data. Our job really is to think about ways of finding what patient-generated data would be most useful so that clinicians can gain real insights into the experiences of living with a particular condition.

What role can hospital executives play?

OKUN: Look beyond your walls and be sure you are aware of the community around you. Be sure you know what community resources are available because those are the things that patients will depend on when they leave your walls.

It is incredibly valuable for patients to know that you are connected with things they value in the community, whether it is a social work agency or Meals on Wheels. When I did home care, I saw that I was a guest in my patients' homes. I think we need to take that perspective in the hospital environment. We are welcoming patients into the hospital, but we need to welcome them as partners in our environment and understand that our environment may not feel as comfortable to them.


The Okun File

CV:

• Bachelor's degree in nursing from Southern Connecticut State University; master's in health and human services from Brandeis University's Heller School for Social Policy and Management.
• Received a nursing diploma from the Hospital of Saint Raphael School of Nursing, New Haven, Conn.

On being the first nurse to speak at TEDMED:

I do a lot of public speaking, but that one unnerved me more than anything. I thought, "I have so much I want to say. I have this wonderful environment in which to say it, and I have seven minutes to do it. And, I'm the first nurse who has had the opportunity to say anything up here, so how am I going to make that matter?" It was a heavy responsibility, but one that I took very seriously. I remember [TEDMED Chair] Jay Walker saying, "Seven minutes matter. It is short. People will seek it out. People will remember it."