Patient, Family Caregiver, and Other Stakeholder Engagement

Join Alyce Adams, PhD, Stanford University, Libby Hoy, BS, Patient-Centered Outcomes Research Institute and Patricia Rodriguez Espinosa, PhD, MPH, Stanford University as they discuss engaging patients, caregivers and communities in research, methods to evaluate success and impact and the state of research and future for engagement. This podcast will discuss each topic covered in the Patient, Family Caregiver, and Other Stakeholder Engagement domain.

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Transcript

Alyce Adams, PhD: Hello everyone. My name is Alyce Adams. I'm the Stanford Medicine Innovation Professor and Professor of Health Policy, Epidemiology and Population Health, and by courtesy of Pediatrics (Endocrinology). Today we are here to talk with you about the AGS/ AGING Learning Collaboratives Podcast on Patient, Family Caregiver and Other Stakeholder Engagement.

Today we'll be addressing and discussing key points from this module in order to understand how patient and family engagement can really improve and enhance multiple chronic conditions research. My key takeaway from this module has to do with how engaging patients and communities in MCCs research is so critical to advancing health equity and health equity science.

For example, persons with multiple chronic conditions are often excluded from research because they have multiple chronic conditions. Engaging patients and other stakeholders in the work that we do has allowed us to understand better how [00:01:00] these exclusions influence our research, and to find innovative ways to include more diverse populations in our research. Whether it's expanding inclusion criteria to include those with multiple chronic conditions and/ or to make sure that our patients who are involved in our studies reflect the diversity and richness of the populations we serve. 

Now, I'd love to introduce my colleague, Libby Hoy. Libby, please introduce yourself.

Libby Hoy, BS: Happy to, Alyce. 

Hi everyone. I am Libby Hoy. I'm the founder and CEO of PFCC Partners. We are a patient and family powered organization that seeks partnership with organizations and importantly with research teams. 

I'm so excited to be in this conversation today, and I just wanna call out the fact that I, as a patient and family partner, as bringing my lived experience into this conversation, we're demonstrating the exact partnerships that we're [00:02:00] kind of talking about.

So Alyce and Patricia, it's such an honor to be here with you talking about my favorite topic, which is patient family engagement. 

So I, I think a couple of the big drivers for me that I really wanna get across and have people pull out of this module is number one, the need for infrastructure. So I think there's a lot of really well-meaning folks out there who want to engage the patient and family, the person with lived experience into their project. And that's really well-meaning. And it's kind of like, "Oh yeah, let's do that. Let's talk to them."

But what's really needed is to set the infrastructure from the start of the project so that that person's perspective, that lived experience, is informing all aspects of the research project. And I think that infrastructure piece laid out at the very early onset of the, of the research project is really, really helpful in truly integrating the, the voice of the patient and the family. 

The second [00:03:00] thing that I think is really important is to decouple the concepts of patients as research subjects and patients as research partners.

As a research subject, I am sharing parts of myself, my data, my outcomes with the research team to promote the actual project. As a research partner, I'm removed from that. I'm selecting in to be your partner in thinking about: how do we best recruit for this project? Or how do we best design dissemination efforts? I'm informing those processes with the project lead team. So I think that that piece is really important to me too. 

And then finally, evaluation, which I know Patricia is gonna talk about in just a minute, is, So important and often overlooked that we evaluate from the patient, family partner perspective as well.

So it's important to have all 360 degree view on how that [00:04:00] partnership was really effective during the course of the project. So those are kind of my hot ticket items, if you will, out of the module. And with that, I would love to invite my colleague Patricia in to share a little bit more about the evaluation aspect. 

Patricia Rodriguez Espinosa, PhD, MPH: Thank you, Libby. Thank you, Alyce. Hi everyone. My name is Patricia Rodriguez Espinoza. I am an assistant professor in the Department of Epidemiology and Population Health, and I also serve as the Associate Director of Research for the Office of Community Engagement here at Stanford Medicine. It is my absolute pleasure to be discussing this topic today and be here with these wonderful colleagues.

I wanted to highlight a, a few pieces from this module. I do a lot of work related to evaluation, so it's really exciting to see that in this module. I wanted to highlight for our audience, that's something that they might not know in this [00:05:00] area. It's that really the science of community engagement has significantly developed over the last few decades.

This is really an exciting time. From this work, we now have more empirical tools for evaluation. We also have empirical frameworks that can guide your work and that have really become and allow us to understand some of the best practices in this work. In this module for example, we highlight some of the work by Dorina Wallerstein at the University of New Mexico, who has done an incredible amount of work in developing an empirical model of community engagement of community-based participatory research, and has some well validated, nationally validated evaluation tools that are freely available, as well as available in multiple languages that our audience can use. These are frameworks and tools that we're developing studying over 150 community [00:06:00] academic partnerships across the us. In addition, the Academy of Medicine has recently released a comprehensive set of tools and resources for assessing meaningful community engagement. So truly there's a wealth of resources now available and it's really an exciting time. 

And I also wanted to highlight that spending time in evaluation and reflexivity, it's really a best practice of community engagement and community engagement research. Investing time in evaluating both partnership processes and outcomes can allow you to do better science and to strengthen the partnership in the long run, meaning that partnerships who really invest in thinking and evaluating their work, both in terms of outcomes of their studies and projects, but also in terms of their partnership practices tend to do better, tend to develop more capacity, and also stay together as partners [00:07:00] longer. In other words, engaging in evaluation efforts throughout the partnership is really an important predictor and indicator of partnership and project sustainability.

So I'm really pleased to see that as part of our work and and this module. 

Alyce Adams, PhD: Wonderful. Thanks so much to both of you. Patricia, I wonder if we could start with you, you mentioned the word reflexivity. What is that and what does it mean in terms of the practice of multiple chronic conditions research?

Patricia Rodriguez Espinosa, PhD, MPH: Absolutely. So reflexivity is in simple words, the process of, of really spending some time to think about how are we doing the work. It's not just about the work that is happening, but how exactly are we doing that? How are we doing it? How can we learn to improve that process in the long term? 

And I believe that for this topic, especially when we think about multiple chronic conditions and the complexity of those, the complexity oftentimes of social determinants of health, in that [00:08:00] space of access and many other issues, there's likely a lot that the teams are doing to tackle those.

They're likely thinking about projects that might be complex, that might have multiple partners, multiple dimensions, and I like to recommend that. Sometimes we can get maybe lost a little bit in the doing and spend less time or less effort in thinking about the how are we doing that and how we can learn from the process itself.

Alyce Adams, PhD: Wonderful. Thank you so much. I completely agree. And it's interesting that you mention the team almost as a component or a variable that you have to think about in the research, right? Like as researchers we're so often focused on trying to control our environment, and I think it's intriguing to think about the team itself as bringing something to that environment and the importance of understanding that contribution as well.

Patricia Rodriguez Espinosa, PhD, MPH: Absolutely. Excellent point Alyce, and thinking of, of the team as a great resource as well, that requires [00:09:00] investment. When we think about community engagement too, there's a lot of values and, and core ideas around trust, around capacity building, around empowerment that can be helpful in those long-term outcomes of the project itself. But we need time to, to invest in those and to evaluate whether our current processes are really supporting those foundational pieces of the partnership. 

I'm very curious, about Libby's thought about some of those, especially from the partner/ patient perspective. 

Libby Hoy, BS: Thank you, Patricia. I think the term I'm just making notes of for myself, I'm learning already the, the term "reflexivity" that's so essential.

And I think what you're speaking to is the idea and the concept that as researchers, you're more aware of your impact around you. But in that process, you're also making space to learn with your [00:10:00] patient, family partners. And you're, you're, you are making space to nurture the relationship. And I'm, I'm, I know that this is a research audience and so the words nurture and relationships may be uncomfortable, but that's an element to building that capacity like you were talking about, and empowering communities to be really active in research. 

So I, I really love where you're going with this. 

Alyce Adams, PhD: I love that concept of sort of the space in between, right? So I bring something, my patient partners bring something, other members of the team bring something.

But it's really that space in between where we learn, right? We learn about each other, we learn about the work, and we learn how to move forward together. And it brings you back, Libby, to something that you have really instilled in me as a researcher to think about from the beginning, and that is infrastructure development. The development of infrastructure. I know Patrice had works in this space a lot as well. 

Could you give us some examples? What does it mean to build an infrastructure for engagement? Yeah, you're right. 

Libby Hoy, BS: I was thinking the [00:11:00] same thing, Alyce, that the infrastructure component ties directly to those spaces in between and there is so much learning to be had there.

So infrastructure really kind of makes the opportunity for patient family partners to be integrated at all levels of the project. So from the steering committee to project co-PIs and things like that. And so the infrastructure is really intentionally thinking about what it is we want from this relationship.

So it's kind of counterintuitive to what I just said about nurturing relationships. Wherein the infrastructure allows you to think about what would the ideal be and not think about people so much in that moment as what is the perspective that we are missing? Here's our team. Where's the gap? And who do we need to bring in?

Then we can develop a specific recruitment plan that would really outreach to that, that voice, that perspective that we need. And so [00:12:00] it also allows us for some time to get to know each other. Right. I remember Alyce, when I suggested an application and interview when we worked together, it was like, really?

And that does seem a little bit burdensome, but what it provides is a few touch points before we engage to get to know your patient family partners, and for them to get to know your, your team and your project and ask questions. So building the infrastructure gives you a plan. And when you bring in your patient family partners and you are learning with them, you flex that plan.

But it's really hard to flex without a base. And so we really talk about infrastructure in terms of communication cycles, how, who's gonna communicate with the patient, failing partners? Where are those touchpoints? Infrastructure in terms of budgeting from the get go so that we can compensate people with lived experience in an effort to remove barriers of diversity. And so thinking about the budget, thinking about [00:13:00] decision making processes, all of those things ahead of time before we bring our patient family partners in. 

Alyce Adams, PhD: Yeah, I remember those days very well. And you know, it's sort of my early days doing this with you and just learn so much. And I quote you often and one of the quotes that I often give is, has to do with North Star, right?

I think as researchers we often worry about when we engage with patients and caregivers and others that we don't want to control the conversation. We don't wanna come in too heavy with what we think should happen, and so we tend to be a little bit timid. And I remember you talking about, well, if you don't know where you're going, how do you expect us to go there with you?

Right there? Sort this idea that you need to first establish sort of why are you engaging in the first place, right, as part of that infrastructure, and then working with your partners to sort of figure out what is a road to get there and getting advice from them about how to do that well. But I'm wondering if you wanna say a little bit more about that North Star concept.

I'd love to hear from Patricia, your concepts about that as well. [00:14:00] 

Libby Hoy, BS: Yeah, I'll just jump in and then I'd love to hear Patricia's opinion as well. So the North Star is critical. There's two elements that are really critical to getting started and one is having a well-defined scope for your project. And, you know, most research projects don't really struggle with that scope aspect.

So knowing that you're gonna be looking for partners that represent that lived experience within the scope of your project is important. And then as Alyce mentioned, having a North star that everyone can line up to. So that means plain language. That means you know, what are the big goals, what is the impact your project wants to have on the environment?

And then sharing that in a way that's accessible to patient family partners so that you do have this north star that everybody's lining up to. And that's important not only so that you are moving collaboratively in the same direction. But it's also important when things come up that maybe aren't, are disjointed, right? Or patient family partners or others are bringing the, [00:15:00] the discussions off track, you can line that back up. So it provides that, that guidance to the entire team as to where we're going. But yeah, I would love to hear Patrice's thoughts on infrastructure. 

Patricia Rodriguez Espinosa, PhD, MPH: I have to say I had not heard this term of the the North Star, and I think it's a wonderful metaphor for this work. I think this is so fitting with some of the content that we have in the module. For example, we have an, an empirical framework there in the evaluation module for community engagement and community-based participatory research. And the model oftentimes starts exactly with what you are discussing, Libby, of thinking about the outcomes. So asking the partners throughout the partnership. You can do this at the beginning, but also later on, really reflecting again on what are some of those short-term, intermediate and long-term outcomes that you're really trying to address? 

When we [00:16:00] think about aging, multiple chronic conditions, there's likely a lot of outcomes. Some of them might be in the longer term, but there's other outcomes that the partners might be. Interested in, and there's also some of this infrastructure and capacity building outcomes as well that I'm hearing you both Alyce and Livy discuss and having that North star or those outcomes really laid out can then help the partners move a little bit back in the model.

And now think about what are the contexts that have laid the foundation and the issue at hand that we want to address? What is our capacity around the area? What is our trust as partners? Are there political issues, sociocultural issues that we should be thinking about as we embark in the process? And then moving a little bit more within the model on thinking about what are some of the partners and partnership practices that we wanna engage in together as partners?

Thinking about who [00:17:00] is at the table, what are our sets of skills that we each bring or resources that we bring that would allow us to go into that journey together? To really impact those outcomes. And as we're thinking a bit further down in terms of the intervention and the research, how are we also thinking about capacity building, about co-learning?

How do we culturally center our interventions and really engage in a process that allows us to do more together and to really have some, some partnership synergy and long-term impacts. So it seems to line up really nicely with, with some of our existing CVPR community-based participatory research frameworks, this idea of starting with the outcomes and then going back and thinking really about your context, about your partnership process, and then about your intervention at research. 

Alyce Adams, PhD: That's fantastic. And you know, it reminds me too, you said something, Patricia about, and Libby as well [00:18:00] about sort of when we get it wrong, right? Or when, when things aren't going well. Maybe I should put it that way. 

And I, I distinctly remember those times in which my patient partners have pulled me aside and said, "Hey, you know, things are kind of we're not, either, we're not focusing on our North Star or things have changed in terms of how we're operating in ways that don't allow us to engage like we were at the beginning."

And so those are always hard things to hear, but I've always been so grateful that we did build that infrastructure at the beginning, so they felt comfortable coming to me and telling me that. But it also reminds me, Libby, you mentioned this in your introductory mark. Patients as subjects versus partners and that sort of partnership aspect and how sometimes cultural and other differences between the research team and the patient or caregiver participants can actually make that even harder.

Right? Those hard conversations, the difficult communication when things aren't going well. I wonder if you could speak a little bit [00:19:00] to that and how do we get outta that? Once, you know, sort of when you see yourself going down a bad path or you're a little bit worried about it, or the patients might bring it up, like how do you, how do you pull you out of that and get back on track with where you wanna be with your partners?

Libby Hoy, BS: I tend to simplify things, and that is important in that it's not as difficult, right as you think. So if you have a North Star that's really well articulated, everybody's in line, they understand it, then chances are if you're going off stream, you're not lining up under that. So just that ability to come back to that, you know, objective or, or mission statement, vision statement, whatever you wanna call it, to come back at that. I also really recommend a charter to help us understand sort of the guardrails for the partnership. You know, the number of meetings and who you call and what the communication loop should look like.

And if you're looking back at those and these interactions are, are drifting, you know, really thinking about has the [00:20:00] project changed because of the influence of patient family partners or other stakeholders? If so, then how do we address that within the structure that we've set up? And, and so it becomes an opportunity.

It becomes like this strong base for flexibility, if you will, and able to adapt. I think that's really important. And then again, if you see it's going off track, but that's not really adding value to your North Star. The North Star doesn't change. How you get there might change, but the North Star doesn't really change.

And so if that's not lining up, then that's maybe not an activity that you need to be involved in. Or if the patient, family partners are feeling like, gosh, we, we have a lot more to give and we're not finding avenues to do that, really thinking through with them. 

I also wanna just relieve the burden to all researchers that you have to come up with all the answers, right? You don't. That's why you're in partnership. And so the more that you make space for that [00:21:00] continuous learning, I think the more effective and impactful your partnerships will be. Patricia?

Patricia Rodriguez Espinosa, PhD, MPH: Yes. I, I really appreciate that perspective, Libby. And it makes me think that we should assume, like any partnership conflict may arise and differences in opinions may arise, and that is excellent.

The worst outcome will be where no one says anything when something's going wrong, right? We wanna make sure that we have a safe space that partners feel comfortable saying, "Hey, that doesn't seem quite right," or, "I'm not understanding why we're doing this," or "We seem to have gone in a different direction," or "we're not engaging in the way that we were at the beginning."

That having that foundation that you were describing, Libby, or your concept of having that infrastructure in place and thinking that this is not a one time conversation. That to really create trust and dialogue and mutual learning and mutual decision [00:22:00] making and bidirectional partnerships really requires an effort over a long period of time and creating opportunities for those dialogues and for that feedback to come across throughout the partnership. Not just perhaps in the beginning when we're doing a lot of thinking together and we're all really exciting about the work, but creating some. Space throughout. This is an opportunity where evaluation might come in to really create that space for the partners to come forward and, and say their experiences. And this is for all of the partners, both the academics and the community partners. 

Alyce Adams, PhD: I love that. And one of the things that I know, again, Libby has taught me is about this sort of iterative evaluation, right? That it's not just after the project's said and done, you go back and evaluate and do some sort of postmortem, but that you really, throughout the project asking how things are going, including after each engagement, asking how did that go for you?

And it could be light lift, right? It doesn't have to be sort of intensive evaluation every single [00:23:00] time. But doing check-ins and getting that feedback is important. And I'm wondering if you could sort of elaborate a little bit more about some of the other best practices for evaluation that you've seen or experienced?

Patricia Rodriguez Espinosa, PhD, MPH: Absolutely. So thinking about a variety of places, I think our work in developing evaluation tools has really come from, from the thinking about what are those best practices and principles that, that really help partnerships be successful. And there's being a few mentioned here, for example, Livy, you were referring to, to having a shorter or having formal agreements.

We do know from the literature that having those, it is in data best practices that, partnerships who have formal written agreements, whether that's memorandums of understanding, partnership agreements, they might be agreements with tribal partners, for example. But having actually gone through the process of developing those as partners and thinking throughout of how are we gonna come together as [00:24:00] partners?

What is that north star for us? How are we gonna share resources? Maybe for example, you were mentioning the budget. Resource sharing is also another best practice that you can capture potentially in some of this evaluation of this feedback. 

Trying to get a sense of the partners. Are they perceiving that, that we are being good stewards of the resources? What percent of the fund is going through the community partners? For example, are we adhering together to CVPR principles? Oftentimes those formal agreements help us navigate territories where there might be conflict. For example, data use, where is the data store, publications, et cetera. So we have invested time earlier in the partnership to think about how do we wanna address and tackle many of those factors.

Another best practice that that we can get a sense in terms of evaluation is influence. So do the various [00:25:00] partners involved feel like they truly have an influence in the decision making for the project? That they can influence where the project goes, that they have an influence in terms of some leadership. And that they feel like the, the individuals involved in the project are being good stewards of both the resources, but of the project. 

So many of this best practice, and there's many more that we know of, and there's more within the module, you can have items for them. And we have developed some items for them that you can incorporate in your evaluation, but you can also use it as a way of preparing, so as a way of thinking earlier in the partnership, how do we set some of that foundation and that infrastructure to allow us to do something related to each of those best practices and really incorporate them in the project. 

So it can help you both as a brainstorming tool and a design tool, but also throughout the process as a temperature check in a way of [00:26:00] how the partnership is doing.

Libby Hoy, BS: That's amazing. I love that. It seems like we're coming to our close of our time together, but I just, you know, wanna speak up and say how much I value the partnership right here with Alyce and Patricia. I have learned so much from you both in the course of producing this module, so thank you so much.

Patricia Rodriguez Espinosa, PhD, MPH: Likewise. It's been wonderful to do this work. I hope our audience is excited about the work. There's much to do and there was much discussion here today, but also now there's also a lot of resources now out there for you. 

Alyce Adams, PhD: Absolutely. Thank you both and thanks so much for those of you listening today and again, we do hope that you get much out of the modules that have been created and really start a community of practice around engagement for multiple chronic conditions. Thank you.