How do clinical research funders operate? Why do patient-centered outcomes matter so much and improve the quality of research? And how is patient-led research being applied to clinical care? We will learn all that and more in this episode of Research in Action with Greg Martin, Chief Officer for Engagement, Dissemination, and Implementation at the Patient-Centered Outcomes Research Institute (PCORI).

 

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Episode Transcript:

 

00;00;00;00 - 00;00;21;14
How do clinical research funders operate? Why do patient centered outcomes matter so much and improve the quality of research? And how is patient led research being applied to clinical care? We'll find all that out and more on this episode of Research in Action.
 
00;00;21;16 - 00;00;45;16
Hello and welcome to Research in Action, brought to you by Oracle Life Sciences. I'm Mike Stiles and today our guest is Greg Martin, chief officer for engagement, dissemination and implementation at the Patient Centered Outcomes Research Institute, referred to as PCORI. Greg's been with the organization 12 years or so, and prior to that spent time as manager of State government affairs for the American Academy of Family Physicians.
 
00;00;45;19 - 00;01;05;09
And we're going to be talking about no big surprise here, patient centered outcomes. So, Greg, we really appreciate you being with us. Well, thank you, Mike. It's a real pleasure and an honor to be here with you. I've listened to some of the podcasts and greatly benefited from the insights and the advice that you're bringing to folks through this, through this series.
 
00;01;05;09 - 00;01;23;29
So really just a real pleasure to be a part of it. Yeah, the show is really picking up steam and audience and getting some legs under it. All right. I guess let's start off by just having you describe your specific role at PCORI. What's your primary goal every day? And kind of also tell us about the overall purpose of PCORI.
 
00;01;24;02 - 00;01;46;12
Yeah, that's a great question. You know, and I always kind of joke around with folks that, you know, my mom does the classic two Bobs question from office space here. Remember that movie when I asked you about my job? What what exactly, son, would you say it is that a chief officer for engagement, dissemination and implementation does and it's a limited it's an uncommon title.
 
00;01;46;12 - 00;02;15;27
But the way I simplify it is that, you know, I get to work with a great team that is focused every day on how it is that people can be involved in the work that PCORI does as a funder, how they can be involved in the work that PCORI has funded and also how they can use in their everyday lives the evidence that property is funded and that last bit they're around evidence that that's why we're here.
 
00;02;15;28 - 00;02;57;06
PCORI is a clinical research funder. We were authorized by Congress. And interestingly though, even though we were authorized by Congress, we are an independent nonprofit and we're solely federally funded to do one thing, really, which is to fund patient centered comparative clinical effectiveness research or C.R. for short and C.R. as a specific type of research that's looking at intervention and approaches to health and care that are common in practice in the US health care system that stacks those interventions are approaches up against each other to really try and figure out what works best for whom.
 
00;02;57;08 - 00;03;19;14
But that patient centricity part in our name we take very seriously and we apply that to the C.R. We fund because it's not just about what works best for whom. It's about what works best for home according to their preferences. And that's where you get to the patient centricity. We all want to be healthy. We all want to live well, but we also want to do it in our own way.
 
00;03;19;14 - 00;03;48;06
We have slightly different definitions and that gets to that, that personalization of care, where we want to understand, given the options, what what should I reasonably expect will happen to me or what can I reasonably expect may come out of this for my loved one? That's the Cory Sweet spot. That's where we sit. And so I work with a great team that finds ways for people to be involved in that work, both again, what we're doing as a funder and the work that we fund.
 
00;03;48;09 - 00;04;12;23
Where does your passion for this work come from? Was there something you saw long ago in your work at the Academy of Family Physicians that kind of grew your interest in patient centered outcomes and how important that is? Yeah, that that's a great question, Mike. You know, and it's not something that's born from any single source. You know, I think all of us bring different lenses, different perspectives, different experiences to the table.
 
00;04;12;23 - 00;04;50;07
And one of the reasons why I'm so honored to have this job with PCORI is the fact that we recognize that and we in a way celebrate that and experiences that brought me to this to this point include, you know, that time working for American Academy of Family Physicians. It was a great time with them thinking through and working on issues related to the primary care workforce, health system delivery, health system design, how we pay for health care, how we pay for the myriad of services that make a difference in people's lives.
 
00;04;50;09 - 00;05;16;14
Prior to that, I've been with the National Conference of State Legislatures and working with state legislators and legislative staff of all stripes, thinking through how it is that we design and arrange systems of care to meet the needs of the people. And then that's the professional lens. But also, candidly, on the on the personal side, we all approach health care as patients, as families, as carers for people.
 
00;05;16;14 - 00;05;47;17
And we see and we live and we experience the multitude of ways in which our system works or does not. And we see the ways in which questions that we have those dilemmas around the decisions that we're faced with in our health and care and our families. Health and care have answers or don't. Those are the things that really drive me every day when I wake up and I think, okay, how can we advance the ball just a little bit to make life a little bit better for the next person?
 
00;05;47;19 - 00;06;07;27
Yeah, there's no one that doesn't touch and there's no one who's not affected by the system, the success of it or the shortcomings of it, whichever those may be. But research and especially research that involves the general public, that's not easy. What what does bakery do to create and foster engagement with patients and communities that really work and that matter?
 
00;06;07;29 - 00;06;41;00
It's no one simple answer. You know, we tend to think of it in terms of recognizing and appreciating the different contexts in which people exist and thinking through, okay, how is it that we can create an approach to engaging individuals from this community or this community itself in a way that's humble, responsive, resonant with the way in which they live their lives and they experience care.
 
00;06;41;02 - 00;07;14;20
And we also think about it in terms of a few different domains of activities that we can pursue that can foster an environment or an ecosystem where we can start breaking down these silos and breaking down these barriers that may have traditionally existed between research and community, between patients and investigators, between all other members of the health sector payers, insurers, employers, purchasers of care, clinicians of all stripes, hospitals and health systems, etc..
 
00;07;14;22 - 00;07;46;04
So as we've figured out the array of different tools that we should have at our disposal at the quarry and that we encourage others to develop, we want them into some some domains, some buckets, one of which is you've got to fund the practice of engagement. You know, engagement does require resources. When we first set out at the quarry over a decade ago, we heard clearly from investigators, traditional researchers and enthusiasm for getting closer to community.
 
00;07;46;04 - 00;08;18;17
But we heard clearly that they didn't have support through their institution and that our requirements may be some sort of unfunded mandate. We also heard clearly from patients and communities a likewise enthusiasm and a likewise concern that they didn't have structural support for their engagement and research. And so you've got to you've got to think about how it is that you are going to resource financially the venues, the forums, etc., for communities to come together with investigators.
 
00;08;18;19 - 00;08;46;24
You've also got to think through what are the facilitators for driving meaningful and effective engagement. So that's creating different tools and resources. And PCORI has many of these available on our website that we encourage others to use. But also as you look at these, you'll see that many of them are community generated themselves. Sometimes the best and most durable solutions are those that bubble up from the participants themselves.
 
00;08;46;26 - 00;09;12;04
There's also another domain of work that is really this notion of convening that you really need to think through how it is. We can bring