The Importance of the Patient Voice in Health Care

(This is an unedited transcript. For accurate quotes and presentations, please refer to the full-event video.)

Sarah Dash:

Hi, I’m Sarah Dash, president and CEO of the Alliance for Health Policy, and on behalf of our board of directors and our entire team, welcome to this week’s Voice of the Patient Summit. The truth is that no matter how much we in health policy may think we know, being on the receiving end of health care can be one of the most humbling experiences of our lives.

Sarah Dash:

We all know that chilly feeling of waiting in the paper gown for the doctor or waiting on hold as we try to even schedule an appointment, and that’s if we can even access healthcare at all. But when healthcare is patient centered, it can truly lift us up, comfort us and heal us. I know I’ll never forget, waiting in my hospital bed recovering from an emergency C-section, the kind gesture of a nurse fresh from the Navy who just took a few minutes to fix up my bed and instantly brighten my day.

Sarah Dash:

We all know creating a truly patient healthcare system is going to take more than kind gesture or even a listening ear. It’s going to take all of us to really work together and create a better healthcare system that works for patients.

Sarah Dash:

So over the next three days in our virtual Summit, we are going to explore what it really takes to not only listen, but to hear the voices of patients, to incorporate them into our policy and our practice and how our policy and practice affects the people that we call patients. We’re going to challenge ourselves to figure out how to really do this right.

Sarah Dash:

So I’m thrilled that you’ll be joining us over the next few days, and please engage with us on Twitter using the #AHPSummit as we hold keynote speaker Q and A’s and even hear from some real patients themselves. Looking forward to seeing you online. Thanks.

Kathryn Martucci:

Hello, and welcome to the first session in the Alliance’s 2020 Signature Series Summit on the Voice of the Patient. I am Kathryn Martucci, director of policy and programs for the Alliance for Health Policy, and for listeners who are new to the Alliance, welcome. We are a non-partisan resource for the health policy community dedicated to advancing knowledge and understanding of health policy issues.

Kathryn Martucci:

Throughout this three-day event, we will study how the patient voice is collected, how it supports shared decision-making and how it is leveraged in policy translation efforts to improve patient experience and build healthier futures. I want to take a moment to thank our 2020 Signature Series sponsors, and you should see them here on the screen. We really appreciate their support in making this happen. I also want to highlight our upcoming sessions where we will explore the voice of the patient.

Kathryn Martucci:

Please join us at 12:00 PM for a panel discussion on connecting with healthcare consumers to drive meaningful change and throughout the week to learn more about the patient experience. So you see the different sessions here on the screen, and you can also look at them on our website.

Kathryn Martucci:

We’re also excited that our keynote speaker is available to field questions, so you can ask our speaker questions today using Twitter. You can tweet at #DCpatient and use the #AHPSummit20 to engage in the conversation.

Kathryn Martucci:

Now it is my distinct pleasure to introduce our keynote speaker, Mrs. Donna Cryer who’s president and CEO of the Global Liver Institute, the only patient-driven liver health non-profit operating in the United States and Europe. Mrs. Prior channels her personal experience as a patient with inflammatory bowel disease and as a liver transplant recipient into professional advocacy and law, policy, consulting, public relations, clinical trial recruitment and nonprofit management.

Kathryn Martucci:

She’s also a frequent speaker on the topic of patient-centeredness and patient engagement in healthcare transformation, and she has been named one of the top 10 patients who will make an impact by Health 2.0. She holds an undergraduate degree from Harvard/Radcliffe colleges and a Juris Doctorate from the Georgetown University Law Center.

Kathryn Martucci:

With all of those accolades, we are so glad that she is here today. Thank you, Donna. Appreciate you kicking off our Voice of the Patient Summit, so I will turn it over to you. Take it away.

Donna Cryer:

Thank you so much, Kathryn, and thank you to the Alliance for Health Policy for inviting me to speak at this event. It is so gratifying to see an entire summit devoted to the voice of the patient and patient engagement and what that means for healthcare transformation.

Donna Cryer:

The reason it’s important, at least I believe and I will hope to persuade you over the course of the next 15 minutes, because it answers the question: Who is healthcare for, if not for the patient? It’s important, of course, to make sure that we have positive workforce environments for clinicians, for the doctors and nurses and techs and pharmacists to deliver care. It is important that healthcare be designed in a way that is cost-effective for all of those who are paying for it. And that does include the patient and employers and private insurers and our government, surely.

Donna Cryer:

But I feel that the best way to achieve all of the aims that we discuss and debate in healthcare is to stay relentlessly laser-focused on what is best for the patient. You really can’t determine what is best for the patient without asking the patient and considering what is best for the patient in terms of how does it make us healthier.

Donna Cryer:

So we talk in terms of outcomes, but that has so many more facets to it than is just reflected on a lab test or a six-minute walk test or some of the measures that we traditionally use. Is the person healthier? Is their family healthier? Is their community healthier because of the interventions and the activities that we have set up and delivered? Are we delivering that care in the least burdensome ways?

Donna Cryer:

It was not my intention to devote my entire career and, in fact, every waking hour to healthcare. That came about because I had devastating diagnoses and starting at age 13 and again in my twenties and a liver transplant between first and second years of law school that made me ask new questions.

Donna Cryer:

It made me want to make sure that the experiences that I had undergone, the innovations that saved my life were available to other patients but in a way that weren’t as hard to navigate, as difficult to understand as it was for me and my family. Because most patients would rather go back to living their lives, taking care of their kids, working in myriad other careers and pastimes. So we need to make it so that those patients can drop that burden and go live full lives engaged in other practices.

Donna Cryer:

But if they do choose advocacy, they do choose to stay in healthcare and stay in health system change, that we do honor that choice as well. And so that brings us to the patient voice, a term that I find so fascinating because it is more than just my voice or a patient’s voice.

Donna Cryer:

My daughter is an operatic soprano. She has a beautiful voice, but it’s the content of what she says certainly now that she holds her own degrees in medicine that make her voice so meaningful.

Donna Cryer:

So when we think about a patient voice that makes a substantial contribution to healthcare policy, to healthcare systems, change, transformation, whether that is in research policy, regulatory policy, coverage reimbursement policy, or quality care systems design, it really is about so much more than simply a voice. Certainly it’s important to be present.

Donna Cryer:

The old Washington adage that if you’re not at the table, you’re on the menu is true. But it’s important that patients be matched to the right experience and right opportunity so that if you are a patient who has expertise in engineering, you didn’t lose that when you got sick. You still have that knowledge. They didn’t take away my degree in law when I got my transplant, so I work in policy.

Donna Cryer:

Matching the right patient to the right experience are not interchangeable. It’s such an important part of having the effective exercise of a patient voice, making sure that patients are equipped for the roles that we place them in or invite them into so that they have the scientific data, the medical terminology or outlines on the navigation of the system. That they are as prepared as any other stakeholder or representative of whatever committee that we have.

Donna Cryer:

For patient voice to be effective, they should be supported and amplified by the other members of the group. I remember when I was serving on a guidelines committee in oncology, as would have it. I made a point, and I got a lot of pushback on the issue. It wasn’t until I was rescued, if you will, supported really by a renowned researcher who said, “She’s right, and here are the citations for what she’s saying.” I’ll never forget that.

Donna Cryer:

So, so often I’m the only patient at the table, in the group, on the committee. It’s exciting to see that change, but having been the first patient and doing, hopefully, a good job of holding that door open for others so more joined me. But being that first patient, I can’t overemphasize to all of you listening how important a role you play in equipping, supporting and amplifying the voice and the contributions of the patients who participate with you in these new roles, particularly as they’re building their confidence.

Donna Cryer:

I had an experience with one health system and it wasn’t positive. I was trying to get to the bottom of it. To get to the bottom of something, you go to the top. But eventually speaking with the vice-president of this health system, he was candid with me and he said, “Well, the system really hasn’t been built for patients.” That’s why as we were diagnosing and decoding and deciphering everything that had gone wrong with my care, that’s really what it came down to: The system wasn’t built for patients.

Donna Cryer:

So how could we in partnership moving forward, build it for patients with patients? Part of that for me was asking for a meeting of all of my specialists, something that they resisted. They said they didn’t need, that they collaborated and communicated fairly behind the scenes without me. The fact that I was hospitalized meant that that had not happened effectively.

Donna Cryer:

When the meeting did happen, my husband, who’s a physician and a renowned researcher in his own right, asked me, “Well, where are you going to sit?” I looked at the table and I said, “Well, I’m going to sit at the head of the table because this is about me and this is my meeting.” And as he did many times in the early days of our marriage, he simply shook his head and went to watch from the sidelines, but it was a very productive meeting.

Donna Cryer:

I give that message to other patients that it’s not enough to just have a voice or warm a seat. I think we should, as patients, as people who are supposed to be the beneficiaries of the system of this care, it’s not inappropriate for us to sit at the head of the table.

Donna Cryer:

That’s why I described the Global Liver Institute as a patient-driven organization. Yes, we are patient-centered; that word, although, sometimes makes me feel like a target instead of wrapped in concern. It doesn’t make me feel particularly empowered. Patient engagement is great, but being patient partnered and having things that where the power has shifted, so that things are patient driven, I understand how that can be a little disconcerting for other stakeholders.

Donna Cryer:

But again, if we go back to my original question, who is healthcare for, I would maintain it’s not inappropriate that patients sit at that head of the table and drive the design and drive the change of the system that is for us. Policy makers, our patients, sometimes they forget that.

Donna Cryer:

I find though that the best policy is when you scratch the surface of it, it’s because they’ve talked to a family member who has gone through an experience or they’ve had an experience themselves and it’s given them an aha moment and a change in perspective. And instead of thinking about healthcare as something that happens to others, they recognize that it’s something that happens to themselves. It’s something that happens to us. And what type of care would we design if it was happening to us?

Donna Cryer:

I think that leads to the best policy design. It’s certainly when I have sat at the head of research organizations designing the questions that then become research that then become the literature and the evidence that drive guidelines and quality measures. Understanding that the patient-driven, this patient partnership, the patient voice giving life to the experience of patients and the realities of health and healthcare in their own day-to-day prioritizations with everything else they have going on, working, caring for families and just enjoying life.

Donna Cryer:

When everything is constructed around that, then it does become more valuable. That’s the other buzz word that’s often used these days. When it’s valuable to the patient and valued by the patient, then we can assure that that is the true and sustainable meaning of value.

Donna Cryer:

So I’m so grateful for the experiences that I have had, the opportunities to persuade other members of committees who are working with a patient as a peer for the very first time to open their minds, to open their hearts, to open the lens of their experiences. To invite new types of expertise, to invite new types of data and thinking and information to inform what healthcare can and should look like.

Donna Cryer:

And I am so excited about everything that you all will be discussing and debating and ultimately delivering on in all of your roles across the healthcare ecosystem, based on what happens over these next few days at this summit.

Donna Cryer:

I am so honored to have just these few moments to have you think about the fullness of what the patient voice and the use of that term really means. The presentness, the matching to opportunities for being equipped, supported and amplified, what patient voice really means. So that you can take that home and implement that in your own work. And hopefully that question of who healthcare is for, it’s for the patient; it’s for us, will help to clarify all the rest of your decision-making.

Donna Cryer:

I am absolutely grateful as I sit here 26 years of post-liver transplant, having been the beneficiary of innovations in medicine, in surgery, in healthcare delivery, in healthcare policy and payment. It has taken me from the hospital bed to the hospital board. And so grateful to all of you who have played a part in that and will play a role in that.

Donna Cryer:

I thank you for including my voice in this Summit and in the conversations for years to come. Have a great conference, have a great Summit. Thank you.

Kathryn Martucci:

Thank you again so much for joining us today and sharing your insights. And most importantly, for reminding us that not only should patients be at the table, but they should be at the head of that table. So what a wonderful way to start off this week.

Kathryn Martucci:

And for those of you listening, I would want to remind you again to please join us for our remaining sessions. There’s one at 12:00 today, and then throughout the rest of the week. And a recording of this keynote and additional materials are available on the Alliance’s website. Thank you, and have a good afternoon.