Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, Founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some really amazing people, hearing what health literacy is, why it matters and ways every one of us can help improve health understanding.

Today, I’m talking with Rosalind Joffe, who is founder and president of ciCoach, giving people who live with chronic health conditions the tools they need to thrive at work.

Rosalind knows these issues well as she herself has lived with chronic illness for over 35 years. As both a patient and a consumer advocate, Rosalind chairs the Patient Engagement Council of Massachusetts Health Quality Partners. She also writes, blogs and speaks about chronic health challenges and their impact on a person’s career.

Welcome, Rosalind.

Rosalind Joffe: Hello, Helen. Good to be here.

Helen: These days, the terms “patient-centered care” and “patient engagement” seem to be all the buzz. You’re not a health professional and I know that, but I also know that patients are the true experts in patient-centered care.

I’m really eager to get your perspective on these issues. What is patient-centered care from your perspective?

Rosalind Joffe: The interesting thing about this from my perspective is that actually I don’t like that term.

Helen: Oh, you don’t?

Rosalind Joffe: No. In fact, I like patient engagement even less because I think it’s only talking about one piece of the puzzle. It’s confusing. Isn’t all care patient centered in that it comes from one person, it goes to the other, it comes from the healthcare provider and it goes to the patient?

I actually have come to prefer patient-provider engagement. That’s a mouthful. It’s certainly not a sound bite. I actually think that it reflects more aptly the idea that, from my perspective, we should be promoting, which is the joint sharing of information.

Helen: That’s really interesting. Provider-patient engagement was the term, right?

Rosalind Joffe: Yes, or patient-provider, whichever comes first.

Helen: It almost looks like barbells that are equal on both sides, is what I’m thinking, rather than one side being more important than the other.

Rosalind Joffe: Precisely.

Helen: Tell us more about that.

Rosalind Joffe: Actually, as you said that, I think that’s part of why I’ve gotten to this place. As I become more engaged in my own work with the patient advocacy world out there, there’s a way in which it can often be misinterpreted, or at least from my perspective it’s misinterpreted, that the patient is in charge.

That’s fine to a degree, but then why are you even going to a healthcare provider if you can get all of your information on the Internet and you alone are going to make all decisions?

You’re primarily in this relationship because there’s someone else who has information that you don’t have. You don’t have that expertise. By the same token, nor does the healthcare provider have expertise on you and your needs, wants and values.

Helen: You state that so clearly and well. Thank you.

This is the way medicine always used to be. Do you have any sense about why now? I know you have been living with your own illnesses for quite some time. Has it changed? Is it more of this equal balance in communication now than it used to be?

Rosalind Joffe: Yes. I’m 63. I’ve been living with this since my late 20s. Multiple sclerosis is one of the diseases I live with. I’ve been interacting with specialists as well as primary care providers through all of this.

“Has it changed?” is a really interesting question. My experience is that I’ve always sought out healthcare providers who actively engage me in the process. I have a bias because this is what I found early on and then instinctively kept trying to repeat it.

Certainly, as a buzzword and as an idea it’s being promoted. How much that translates actually to the day-to-day interaction that both patients or consumers, whatever the word is you want to use, and the healthcare provider have, I think there’s still a lot to be desired.

I think that a lot of the same kind of one-way delivery is going on, but that’s because change is slow.

Helen: As far as I know about these changes, I know that under healthcare reform and trying to look at issues of cost and effectiveness in patient safety is why some of these terms got kind of bumped up to the top under accreditation.

I know that there are some outside mandates facing it, but it sounds like you, as a patient yourself and as an activist, someone who can speak up for your own needs or help others speak up too, were specifically looking for that too.

Rosalind Joffe: I was. It’s something that I encourage others to do if it matters.

There, again, like in all change, is a delicate balance. What we see is that some consumers of healthcare feel that they should walk in and be able to dictate what they want and need. Sometimes that’s not in their best interest because they don’t understand the whole picture. There’s a learning curve that goes on here.

With everything, I think the most important part of this puzzle is that the conversation happens and that the healthcare provider asks questions much more than they’re typically asking.

It’s not just asking, “Did you take your medicine today?” but really, “What does compliance look like for you? How is this going to work? What’s it like for you to leave work and get into my office and take four hours off once a month now that you’ve got this new condition?”

These kinds of questions have to be asked by healthcare providers. They need to think about a patient’s life and what this does to them. The only way they can really think about it is, once again, by asking questions.

We’re asking people who didn’t sign up to be questioners. They signed up to be the repository of knowledge. There’s a lot of change that this requires.

At the same time, I’d say that, from the patient’s point of view, this really requires patients being able to get themselves more organized, think about what they want and need and be prepared to ask tough questions and take responsibility.

All of this, I think, is easy to say and do as we’re sitting here and a lot harder to play out on a day-to-day basis, but that should be our intention as patients and as providers.

Helen: You’re framing this so beautifully. I’m a real fan of stories. Can you give an example of what the ideal type of communication would look like?

Rosalind Joffe: Interesting. Something just happened to me the other day. I had an appointment that had been there for a year with my primary care provider, who I absolutely love because she does engage me in everything.

I had to change the appointment and talk to the receptionist who said, “She can’t see you for another year for that kind of appointment.”

Helen: Oh my goodness.

Rosalind Joffe: A year, given the way the billing is these days. She said, “You can see the PA (physician assistant) because it’s your yearly appointment and it’s mostly just tests.” I said sure.

Because my primary care is on email, I emailed her and said, “This is what we’re doing. I’m going to see the PA instead. That’s fine with me because I don’t have any current questions.”

The way this worked out was I could go ahead and make decisions because of my schedule that changed things around. I didn’t feel I had lost complete control of my life because I had a doctor’s appointment.

I emailed my doctor who wrote back and said, “No, I want to see you. You have a complicated enough case. I’m going to see you at my lunch hour.”

It took us each about three minutes of emailing at most and we could work out something that, in another time when everything was done over phone and you didn’t communicate with your healthcare provider this way, would have been impossible.

Helen: Do you know what I heard in that story Rosalind? There were many pieces of it, but it was the joint respect for each other. Everyone hears how busy providers are these days. No one really spends all that much time talking about how busy patients are too.

She had the respect for you, your illness and condition and the relationship, you had the respect for her, and then you also found an alternative way to figure this out. That’s a beautiful story.

Rosalind Joffe: It was very collaborative, as you’re saying. That’s what I look for. If I’m going to have eye surgery, I don’t need that kind of collaboration. I just need a surgeon.

Helen: You just need to show up.

Rosalind Joffe: I just need to show up most of the time. If I’m going to have an ongoing relationship, as a patient, I’ve taken charge in that way. I know what I need from this relationship.

Helen: That’s wonderful.

Our podcast listeners tend to be professionals of some sort somehow at the giving end of health communication, like clinicians, public health folks or health educators. What other tips would you have for them to do this wonderful balancing act between the patient and provider in their communication?

Rosalind Joffe: It’s interesting. Someone who’s a healthcare professional just said to me the other day that, if people who give healthcare information who are providers thought of their patients in the way that they might think of their colleagues or the people that they work with or for, they would respond most likely in a different way.

In other words, when you’re in an organizational dynamic, you think, “If I say it this way, I could offend that person,” or, “I want the person to do this, so I should phrase my sentence this way.”

I would say too often, given the nature and the difficulties of disseminating information these days, since you’ve got these short visits, an enormous amount of people you’re seeing and a lot of pressure, there is a way in which the healthcare provider loses track of the relationship quality that’s going on here.

Most of the time, you as a healthcare provider want the patient, the consumer, that person standing there to feel good about this, to want to do what you’re telling them they need to do and to be actively engaged.

I guess there are two things I would say. One is really remind yourself to ask more questions and say less. The second is remember, “I need to work with this patient.” Think of this patient as someone I’m managing with respect.

Helen: I heard also a word, a conjunction, used in there — with. It’s with the other person, not to the other person.

Rosalind Joffe: Yes.

Helen: I love all of your tips there.

What I want to hear is another part of what you do as an advocate. You’re part of this Patient Engagement Council from MHQP, Mass Health Quality Partners. That’s another term I’m hearing a lot about these days, these patient councils. Can you just tell listeners a little bit what that is?

Rosalind Joffe: The MHQP’s Patient Engagement Council is somewhat different in that MHQP, Mass Health Quality Partners, is not a provider entity in itself. Where you typically see patient engagement councils is in hospitals or in large group practices. The intention was similar.

Originally, when MHQP was started, it was plans, hospitals and providers in an effort to improve quality. Along the way, some very wise person spoke up and said, “We don’t have an important stakeholder at the table: the patient. We need to hear their voices.”

As we developed the Consumer Health Council, we changed our name from Patient Engagement because, once again, it didn’t make sense. It’s Consumer Health.

I’m the chair, so I sit at the board level. It’s trying to figure out in that way what we can bring to the table in terms of the kind of conversation that needs to happen to ensure the quality gets attained and met.

Helen: I actually went to one of the meetings from MHQP. I think you and I might have met a few years ago. There were a lot of people in the room, maybe 15 or 20 folks, I think. I came away so excited to be in that environment and to hear everyone just talking about information and how they get it, what it means to them and what they would change. I saw it as a very powerful force for good communication and good healthcare.

Rosalind Joffe: I agree with you 120%. The real test becomes how can we use it? Within this small entity, how can that voice be best utilized and be heard and be effective?

It’s new. I went to a conference in the fall around patient engagement. This is a relatively new movement, maybe 10 or 15 years old. Now it’s mandated in Massachusetts. We have yet to see how effective or how much it is going to really impact what happens from a large, systemic perspective and in the very small ways as well.

Helen: That’s what I’m hearing from you. I’m hearing about these large, systemic ways of being heard and making an effective difference and also your strategies for those day-to-day smaller things that we can all do.

Rosalind, I so much appreciate all you’re doing for all of these changes and ways you’re advocating on a big scale as with patient engagement councils and also with small everyday tips. How can people learn more?

Rosalind Joffe: I have a website, www.ciCoach.com. That’s what I do. I coach people who live with chronic illness. The website has my blog. It has resources. I have a workbook.

There’s a lot of information there primarily focused on career, how people can keep working and live with a chronic illness, but it’s also about just all of the challenges that come up when one lives with long-term chronic health conditions.

Helen: You have a lot of great resources there. We will list them as well as a link to the Mass Health Quality Partners on your Health Literacy Out Loudwebpage.

Rosalind Joffe: Thank you.

Helen: Rosalind, I want to thank you so much for sharing your perspective, views and lessons learned about the patient side of patient-provider communication. Thank you for being a guest on Health Literacy Out Loud.

Rosalind Joffe: Thank you, Helen. It’s been a delight.

Helen: As we just heard from Rosalind Joffe, patient-provider communication can be a challenge. It’s two ways and we both have to engage with one another.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com.

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Until next time, I’m Helen Osborne.