Patients as experts: How to really become a patient-centered health system with Melinda Karp


MODERN HEALTHCARE: Hello, Melinda. How are you doing?

MELINDA KARP: I am well, thanks. And you?

MODERN HEALTHCARE: Doing well. Thank you so much for making some time to talk about how health systems can think of their patients and their consumers as experts.

So, let me start with three data points before we get into our discussion — and these are just general data points, that kind of will help frame our discussion. The first is that consumer collaboration is not new, and it’s already happening successfully in the business sector. For example, DHL, the global supply company, brings employees and customers together for workshops, ideas — and that has led to their 97% on-time delivery performance. Another example is Lego. Their Ideas platform allows creators to submit new ideas for Lego sets, and over 26,000 product ideas have been submitted since its launch in 2008. 28 have been turned into real Lego sets.

And then lastly, let’s turn to the opportunities for consumer collaboration in the medical industry. So, CACP was created by the leader in patient health care partnerships. Am I getting that correct?

MELINDA KARP: Yeah, we were founded by the Commonwealth Care Alliance — is our parent organization.

MODERN HEALTHCARE: And in fact, CCA’s partnership-driven senior care options have enabled 91% of its members receiving care and support for at least nine years to continue living in their homes or in their communities. Is that correct as well?

MELINDA KARP: Yeah, absolutely.

MODERN HEALTHCARE: So, these are all examples of how industries are collaborating with the people they serve, to serve them better. My first question is really about you. How did this become such an important cause for you? Was it a personal experience? Was it a professional experience? What led this to become a cause for you?

MELINDA KARP: I’m so glad that you raised these examples from other industries. Those who have worked with me or heard me talk will know that I often say if healthcare were any other industry, we would have been out of business about 100 years ago. Because we were kind of last on the bandwagon, if you will, to really bring consumers into thinking about how we design and deliver our healthcare services. And the examples you gave in other industries are terrific. As you said, it’s not new. Folks have been doing this for a long time. And I think we finally hit a tipping point in healthcare where we’re joining in.

But to go back to your question, it’s a great question. And for me, it’s actually some of both. My mom was diagnosed with non-Hodgkins lymphoma when I was 11. And she battled through lots of treatment and a couple of remissions over the next 20 years before cancer finally actually beat her. While her oncologist was amazing and actually became like a member of our family — when we went beyond his office, I grew up experiencing healthcare systems that at best, kindly ignored, and at worst, actively shut down my mom’s voice and our family’s voice.

So, as a teenager, I spent a lot of time hanging out in hospitals, chemo centers, clinics. And I became a keen observer of how — over and over, across lots of patients and families — it seemed like these places that were supposed to be helping and healing often didn’t work very well for those who they meant to serve. I had lots of frustration along the way as I watched all of this unfold, and I had just a lot of curiosity about — how could that be that those who should be at the center of these facilities, these organizations, seem to often be the sideshow instead of the main event? And so, I think that those formative experiences really colored my professional aspirations from very early in my career. I’ve spent the last 25 years really focused on working with leaders and organizations across the healthcare sector. To really lift the voice and the expertise of those with lived experience as experts in the way we design, the way we deliver, the way we evaluate care and services — especially for those with the most complex health and social needs.

MODERN HEALTHCARE: It ties into your personal experience, having seen this firsthand. Most people who have cared for a loved one have also seen this firsthand. What we’re seeing in health systems over the last 10 years is the rise of this patient experience person that’s supposed to kind of bridge that disconnect between the lived experience and needs of the patient, and in the actual processes and operations of the health system. And correct me if I’m wrong, but it seems like this person should really be a surveillance agent. Their first job is listening and observing ,and trying to understand what that experience is like. For these folks, what would you say are the skills they need to be really good at to bring patients and consumers to the table with senior leaders to make the types of changes that you’re going for?

MELINDA KARP: First, let’s unpack that very construct of a patient experience person, or even a patient experience or consumer partnership department. I totally agree it is a necessary structure in an organization. I would argue, necessary but not sufficient, and I’ll get to that in a second. It’s absolutely true that a person, really at a senior level, needs to be accountable for driving a consumer-centered agenda for the organization. But the actual responsibility — and this is where I always differentiate between accountability and responsibility — the actual responsibility for delivering on consumer partnership really lies in every functional area across the organization.

But when I think about the skills or the competencies, if you will, that a leader in consumer partnership needs to have, I think about a few different areas. So, one is the ability to lead with influence. A leader in consumer partnership needs to have sightlines across the organization. And be able to be an influencer among their peers, to gain their support and commitment around the value that consumer expertise brings to the way we design and deliver care and services. The second thing, I think, is really around fostering trust. And of course, there’s fostering trust internally among colleagues and teams. But when we think about consumer partnership, we’re bringing in another set of expertise from those who use our services. And this leader really needs to be able to gain the confidence and trust through both integrity and authenticity, to create ongoing partnership and consultant relationships, really, with the consumers that the organization serves.

And then the final thing I would say is coaching and communicating effectively. We always think about what’s the work that we need to do to help consumers come to the table and be able to engage with us as organizations and share their insights, and to “be good contributors.” But I think the flip side of it is that leaders also need to be prepared to be empathic listeners, and to really check their assumptions at the door. So, there’s a whole set of skills that the patient experience or consumer experience leader needs to have, both in coaching and communicating with the experts by experience — the consumer, the patient — but also with their peers and leaders throughout the organization. So that both sides are really prepared to engage well with each other.

MODERN HEALTHCARE: To the point you just made about leaders needing to be prepped, it sounds like you want to avoid a worst-case scenario, which is where the leaders or the clinicians or the more professional experts aren’t really appreciating or valuing the perspective of the patient or the family member or the caregiver. Because they don’t have certain credentials or because they don’t have the same professional pedigree. All of a sudden, their perspective is sort of diminished, and it sounds like that’s what you want to avoid.

MELINDA KARP: Yeah, that’s absolutely right. We are used to engaging in meetings and engaging with colleagues in a particular way at a particular pace using health speak language, to be totally blunt. Consumers and patients, that’s not the world that they live in. And they have incredibly insightful things to share with us, but they might need a little bit more time to share those ideas. They might not use the language that we might use. And in fact, their language is usually cleaner and plainer and more understandable than our language, if we really stop and listen. And so yeah, we really just want to make sure that we’re prepping everybody to be able to have meaningful engagement.

MODERN HEALTHCARE: So, let’s talk a little more about what this process really looks like. So, let’s say your health system, they want to take this more consumer, patient-focused perspective to creating new services. What does it actually look like to include community members and patients and family members in this process from the very beginning, rather than just bringing them in when it’s time to get feedback after it’s already launched?

MELINDA KARP: At CACP, we think about patient and consumer engagement really as a cycle that starts with discovery. It moves to design and implementation, and then finally to evaluation. And then actually, that cycle can repeat itself. And then there’s really the how. How do we engage consumers across this whole cycle of discovery, design, implementation, and evaluation? And there’s really a continuum of engagement opportunities as well, from feedback to consultation, to collaboration to finally getting to this place of, we think about it as co-ownership or shared ownership. And depending on where you are in the cycle, and depending on what the problem is that you’re trying to solve for, will sort of indicate the kinds of interaction that you want to need to have with consumers.

So for example, feedback, which is really kind of an asynchronous set of interactions, often in the form of a survey or a questionnaire. It’s usually just a single point of connection with consumers on any particular topic. And we usually use that kind of interaction with consumers in evaluation. You know, we do a post-visit survey or we do a post-service survey, so that we can understand what that experience was like. And that feedback in that way, that asynchronous interaction, is a really important dimension of evaluation.

But if we’re really in the discovery or the design or the implementation phase of work, that’s where we really want to be in consultative or a collaborative space. And in those spaces, those are real-time, two-way interactions with consumers. When we think about consultation, those are usually situational and shorter term. They’re usually in the form of focus groups or interviews around gaining consumers’ perspectives and insights, really at a single point in time around a particular topic or issue.

And then we get to collaboration, which is really where we get to ongoing engagement and interaction with consumers. And as we move through these different kinds of engagement or these sort of different opportunities, you see that we also need stronger and more trusting relationships. When we think about collaboration, that’s usually around ongoing workgroups or advisory panels or workshops. And those are really, typically longer-term over the life cycle of an effort where you have the same group of consumers working with you, from discovery all the way through evaluation around whatever that innovation or improvement or services that you’re working on.

And then finally, when we think about co-ownership, where most organizations feel hesitancy and worry about getting into that co-ownership space. Because that’s really where we’re talking about governance, we’re talking about more complex, longer term, really high-trust relationships, where consumers are embedded in governance, in strategy, in planning. That’s when we get to sort of consumers sitting on boards of directors, or sitting within ongoing committee structures within an organization. And those co-ownership opportunities really move well beyond the realm of a particular program or a particular initiative.

MODERN HEALTHCARE: That’s sort of like the Holy Grail that you want to get to, where it’s an ongoing partnership. The patient or the consumer or the family member feels like they are an owner in the process, and it’s not just a feeling. They have veto power over certain ideas. They have the ability to say yes or no. Their opinion is respected enough that it actually gets considered, if not implemented.

MELINDA KARP: Absolutely.

MODERN HEALTHCARE: That was a perfect framework of like, here’s your checklist of how to do this. But I’m sure that you also hear a lot of objections, right? I’m sure you also hear a lot of healthcare organizations saying why this is too hard, too expensive, costs too much in time. What are some of the other objections that you hear from health systems about shifting to this more consumer focus? And how do you respond to them?

MELINDA KARP: With any dimension of a project, if you try to add something in at the end or the last minute, that’s what creates budget overruns and time delays. And the same is true for consumer engagement and participation. You know, when we think about being part way through a process or part way through development of something, and all of a sudden someone says, “Oh my gosh, we should get consumers to weigh in here.” That’s when timelines get delayed. That’s when things cost more, because there’s no infrastructure around that to support it.

The other thing that I often ask people to reflect on when I hear the argument that it takes too much time or too much resource to engage consumers is, how many times have we built something — whether it’s a program, a service, an offering — that we think will meet patient or consumer needs only to discover after much time, after much money, and much effort has been put into it, that we got it wrong? And we don’t get the intended outcomes? That’s where the real resource drain is when you really think about it through that lens.

MODERN HEALTHCARE: If you invest this time in the beginning, plan how this is going to be supported, you avoid all of those landmines of wasted time and wasted money, because you’ve already thought this through and you’ve already included a plan for it.

MELINDA KARP: Exactly.

MODERN HEALTHCARE: Can you think of healthcare organizations who are already doing this work well? What are they doing, and what are the results that are showing them to be successful?

MELINDA KARP: One is the Southcentral Foundation in Alaska. They are a two-time Baldrige Award winner, if you go back and Google them and go look at all of the work that they do. They really, from their foundational roots have included the population, the indigenous population that they serve, at the heart of everything that they do and the decisions that they make — all the way up to the board of director level. So, that’s one.

I would say another one that comes to mind is the Henry Ford Health System in Detroit. They have created this Patient-Engaged Research Center, which again, I encourage listeners to go Google that. Everything in healthcare has to have an acronym, so that acronym for that is PERC. And it really is the engine for the organization in making sure that care and service is developed with patients and families at the table. And so I encourage folks to go look up Henry Ford Health System’s Patient-Engaged Research Center to look at all of the great work that they’re doing on behalf of the organization, to make sure that voices are front and center in developing new programs and services.

MODERN HEALTHCARE: Thank you for those examples. And then last question: For up-and-coming leaders who want to make this a part of how they lead, what would you say are three pieces of advice you would give them? And think of the folks who are — they’re directors who are eyeing the C-suite, and they want to make sure that they don’t forget about the importance of the consumer or patient or family caregiver perspective as they rise the ranks.

MELINDA KARP: Yeah, and the first thing I would say is, boy do we need folks who are directors who have their eye on the C-suite. I would say the first thing is, translate the passion in your mission to action in your business model and strategy. Just about every organization out there, particularly those that care for people with complex health and social needs, have either embedded implicitly or explicitly in their mission, the need to be authentically patient- or consumer-centered. The key, though, is translating that passion that comes from the mission into actually really creating a business model that incorporates those voices. Invest with the same level of commitment that you invest in other parts of the organization. You know, I said this already, but I’ve never seen a successful and sustained model for patient and consumer partnership without the explicit commitment and role modeling by executive and senior leadership. So, you really do have to be willing to make that upfront investment. And think about how it fits into, and how mindset policy and practice need to shift to make sure that the consumer voice is ever-present — and woven into the fabric of how the organization does its work.

The second piece of advice I would give is to be patient, but persistent. It takes time to grow a robust infrastructure that really integrates the experience and the expertise of those that you serve into the business model. Most importantly, is to create the foundation and the framework first, create that foundational infrastructure. And then build one room at a time, based on what’s most important to the consumers that you serve.

And then I think, finally, is to honor and value the lived expertise of those you serve in the same way that you value all the other expert voices that sustain and grow your health system. You know, you’ve got clinical folks, operational folks, finance folks who sit at the table every day and collaboratively make decisions. Well, bring the consumer voice and honor that voice in the same way that you honor your colleagues in all of these other dimensions — and really listen with empathy and listen with intention.

MODERN HEALTHCARE: This was all really good insight. It was very motivating, too. So, thank you for sharing your passion and your energy around this as well.

MELINDA KARP: Well, it’s my pleasure. I will talk to anyone who will listen about the importance and value of bringing patients and their families and consumers very much to the center, and to recognize the expertise that they have to offer us.

OUTRO COMMENTS: Thank you, Melinda, for joining me on the Next Up podcast to share your insights on how to truly make patients the experts in your health system.

Again, I’m your host, Kadesha Smith, CEO of CareContent. We help health systems reach their target audiences through digital marketing that focuses on the right content.

Look for more episodes of Next Up at modernhealthcare.com/podcasts, or subscribe at Apple Podcasts, Google Podcasts, or your preferred podcatcher. If you’ve been enjoying Next Up, please go ahead and leave us a review on your preferred podcatcher as well. Thank you again for listening.

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