SPEAKER: This is a presentation by human development outreach and extension at Cornell University.
RHODA MEADOR: Thank you so much for having me. And I'm glad to see everybody here. And I wanted to say, at the beginning, that I'm going to be talking about a lot of different things, and you could sort of think about what I'm going to be saying as layers of information.
Clearly, the transitions of care is the focus of my presentation. And so I'm going to be talking about a research method that we use, but I'm also going to be talking about transitions of care as an issue.
But I just want to ask all of you for whom the issue is something that you're the most interested in, to be patient with me because at the end of the talk-- and I brought a handout here for a website that has some of the most incredible resources that are helpful for all of us, either at a personal level or a professional level, who are involved in care transitions.
So I wanted to just let you know that I'm mindful that we have a lot of different needs. And I'm going to try to cover these needs, but a lot of the focus of my conversation will be describing the planning and implementation of a consensus workshop that I conducted, along with community partners, on this topic of care transitions for frail elders.
I'm going to be reporting on the recommendations from the workshop and discussing the implications for research and practice. And in discussing these implications, I'll be talking both about the methodology and about the topic related to-- in terms of the focus on care transitions.
And for those of you-- I think most of you probably have heard of the Cornell Institute for Translational Research on Aging, here at Cornell. We've been here for quite a while.
And much of what we do is this fostering research partnerships between aging services practitioners and social scientists, medical researchers-- pretty much everybody we can get together to focus on this.
And we have been-- particularly over the last five years, we have been an incubator for a variety of methods and practices that we believe can be replicated in other settings. And this consensus workshop is one of the methods that we have been working with.
And over the five years that we've been working with it, it's evolved. And we've learned a lot about how it's useful, and how it's maybe not so useful. So we're sort of improving it as we go along. So what are care transitions?
And there's a lot of work-- I should tell you, there's a lot of work-- for those of you who have looked at the literature on care transitions, there's a lot of work in the research community, in the practice community, and in the policy community, these days, focused on this idea of care transitions.
And there is a geriatrician named Eric Coleman who's done a lot of work in the area. And he has defined care transitions as a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location.
So that's the technical definition of care transitions. And why is it so important? Why are these-- why is this becoming such a focus of interest? And the reason is because transitions of care for frail elders from home, to and from institutional care and all these different care settings, have a significant impact on their emotional and physical well-being.
And not only do these transitions have a significant impact, but they often magnify the impact associated with problems in the health care system. And those of you who have either experienced any of these care transitions, either for yourself or with family members, can attest to this fact.
And I think that one of the reasons that this is so interesting to me is because this work sort of shines the light on the inadequacies of our health care system as a whole.
And you'll see, as I continue to talk, that we have a system that is really designed to deliver care at-- acute care at these different kind of-- in these different situations, whereas what's really needed is a system that can deliver chronic care because that's what we need the system for.
More and more as consumers, and as caregivers for health care consumers, it's these chronic conditions that are coming into play. And the chronic conditions are existing over the long haul. And acute health situations happen along this continuum of chronic care. So there's a lot of stuff going on here.
In terms of this consensus workshop method, the method was-- we didn't create the idea of consensus workshops. The idea has been around for a long time.
Consensus workshops have been used in the research community for quite some time to get researchers together to come to conclusions related to research issues and all those sorts of things. The thing that we did with this model that was the most significant was that we tweaked it.
And what we have created here is a model that fosters a dialogue between researchers and practitioners in a very methodical-- using a very methodical step-by-step process so that these two groups of people are coming together, looking at current research, having dialogue in a structured setting, and coming to conclusions, and making recommendations.
And I'll go through the very step-by-step process about how this occurred in this consensus workshop. We've published a number of papers detailing our work with consensus workshops.
And you can go to www.citra.org and look at all these wonderful publications. And it's actually one of the most satisfying parts of the world that we've done at CITRA because it's very concrete.
And for me, personally, the ability to get practitioners, and researchers, and policymakers together in a room has been some of the more exciting work that I've done. And it's just really been fun to sort of see the aha moments that have occurred when that happens.
So in terms of what this method involves, there is a multiple step process-- six steps. I'm going to just go through the steps, talk through what happened, and how these steps were used in this consensus workshop. So in the first step, a group or-- an individual or groups of people identify a topic that they really need to know more about.
And in this step-- in this particular example, it was the first consensus workshop that we conducted where a group of people from the community came to us because they had heard about the model.
And the group who emerged from the community was a group of people who were participating in the Community Health Foundation of Western and Central New York Health Fellows-- or Leadership Fellows program, I guess. On an annual basis, they choose people who are involved in the health system-- health delivery system, and these people participate in a leadership development program.
So in this case, one of the people who was participating in the program knew about CITRA and knew about this model. So as part of this leadership development process, the group chooses the project that they're going to do.
So in this case, this group all were really-- they were really, really interested in issues that related to health-- the health system, and the interaction between the health system and frail elders because all of them worked in settings where they were seeing the problems and they were seeing the inadequacies in the system.
So they wanted to figure out a way to address this problem. And so they contacted CITRA and Dr. Elaine Wethington and I worked with them on this project. And this project was one of the projects that I did. It was actually one of the studies that I did for my dissertation. And so-- because I'm a recently minted PhD.
So that-- I have a very fond feeling about this project and the study. So the next step, after the topic is identified, and we had some initial meetings and kind of talked about framing the topic in a way that it would have the most coherence and be able to sort of meet the needs of the group.
The next step was that the group produced an up-to-date, non-technical review of the literature related to care transitions. So in this case, several people from their group went to the library and they looked up all the information they could find about care transitions.
And in particular, what they were interested in finding out about was-- are there any interventions that are out there, that are evidence based, that have been tested and evaluated, that address this issue of care transitions. And they found that, yes, there are some. And they also looked at other literature related to other aspects of care transition.
And this non-technical aspect of the review of the literature is a really, really important point because, as you're going to see later, the idea of creating this review and listing all the current research is that the review is used as a way to get everybody who participates in the consensus workshop up to speed and aware of what the evidence on this topic currently is.
So it's important, in terms of the non-technical aspect of it, for the language to be accessible to all the different people who are participating. And so the next step was choosing an expert panel of researchers and expert practitioners to participate in the consensus workshop.
And so in this process, what the group had to do was to really think about-- now, who do we want at the table to be able to make comments, and to-- the idea of choosing these six experts was that, at the consensus workshop, after-- the idea is that everybody who attends the workshop will have read this paper-- the technical review.
So everybody comes informed of the current literature. And then at the beginning, sort of kicking off the workshop, these six experts-- half practitioners and half researchers-- sort of talk back to the research. And in very short, five to seven minute presentations, they reflect on what their opinion about the research is.
So choosing the experts was a really important part of the process. And one of the advantages of having a community group do this is because they know who the experts are.
And again, this is sort of getting to this theme that I hope you are noticing that community-- there is this huge value to having community practitioners and researchers involved in all these steps, all along the way because, for instance, the researchers who were involved-- Elaine and I-- were aware of some of these researchers.
We were a little bit more in touch with the evidence base. So we were able to give some recommendations for researchers. And the practitioner-- the people who were the community based leaders, were aware of several really good experts who were actually working with care transitions at the time.
And the people who were chosen were-- the research experts included an expert on rural health and human services delivery, an expert on informal care giving and care transitions, and an expert on community research partnerships.
The community practice experts included a geriatrician and a transition coach. And this person was really-- contributed a lot because she was actually working as a coach in a hospital up in Syracuse, working as a transition coach in one of these evidence based models that is out there and is being promoted as a way to deal with care transitions.
And we also included a public health director from Cortland County. So we there was a really good combination of expertise and knowledge. One of the other things that the group was involved in was inviting experts.
And they invited-- this actually turned out to be one of the more interesting aspects of conducting the workshop because figuring out who they wanted at the table to contribute was a really-- kind of an educational and reflective process because the group-- they were, like-- I think they represented about six counties.
So they all wanted a few people from their counties. So there was a lot of jockeying about how many people they could invite. And so by the time they did all these negotiations, the people who were invited were really the top notch people. In order to get an invitation to this workshop, you had to be pretty select.
So they invited 54 people. And the people were involved-- included direct care workers, nurses, doctors, social workers, discharge planners, policymakers. There were several people from the department-- the state office for the aging.
And we did not have any people who were invited under the-- sort of the category of family members, but many of the people who attended were family members. So that was something that was taken into account. And of all these invitees, 38 people participated in the workshop.
So the next step was that the workshop was actually convened and implemented. And the workshop consisted of a three hour-- very, very structured three hour session, where the first step of the workshop was a very, very brief review of the paper.
Very, very brief because it was assumed, and in these invitations, it was made very clear to all the people who were invited that it's assume that when you come to this workshop, you will have read the paper because the discussion is going to be based on reflections about this paper.
So there was this brief overview of the paper, a description of what the workshop was going to involve, so people were prepared to participate and understand what was going on. There were these brief responses from each of the six experts.
And those had to be kept really, really structured because, obviously, when you get talking about these things, it would be very easy to go over five to seven minutes. So people were told ahead of time, look, this is all you're going to get. And they were really concise and really targeted.
And then after these presentations, there was a facilitated dialogue, which was very free-form, where people just sort of talked about-- having heard all this, now, what are the things that really seem important to them.
What recommendations were-- what emerged after they had heard what the research tells us, what these practitioners and researchers have to share about the topic. And all of the information that people shared-- all these topics and points that people made were captured on newsprint.
So we had a couple people writing newsprint as people were discussing-- writing on the newsprint. So all the information was captured, in terms of the points that people made.
And the facilitation process-- this is something, I think, that's really, really key-- because by the time people had gone through the process of reading this paper, having been invited, understanding what it is they were coming to-- one of the things that I think is key to the success of these consensus workshops is the sense that they're there in a space and an environment where all perspectives are equally valued.
And because we introduced the workshop as something that brings researchers and practitioners together and all that, I think that is one of the most powerful aspects of this model because, in this case, and in the case of all the other consensus workshops I've been involved with, this is the first time that these people-- this group of people has sat at a table and talked about this particular topic.
And in particular, one of the problems related to care transitions is the problem that people are operating-- all these health care practitioners are operating in silos. You have all the hospital people over here, and they all talk to all the other hospital people. The people in social work and community services-- they interact with each other.
And people are not interacting with each other across disciplines. So that was a really powerful aspect of this workshop-- this dialogue that allowed people to brainstorm and to talk about what are the issues? What are the problems? What are the challenges? And what could be done about it?
After this dialogue, and after all the responses were written on newsprint, people had the opportunity-- there was a break, and people, at the end of the workshop, had the opportunity to vote for their top three points-- top three prioritized points, in turn-- to be able to indicate what they viewed as the most important issues related to career transitions for frail elders.
So that in itself is really interesting because there is a lot of negotiation, and people kind of lobbying for their different perspectives. But again, because this was a controlled environment, all very respectful and open dialogue.
So after the workshop, at the very end of the workshop, we told people what the next steps were going to be. And we invited people to come to another session-- a brief roundtable session, which was held about a month after the consensus workshop.
And at that workshop-- at that session, that was the opportunity to revisit the recommendations and to be able to talk about them again, and sort of look and think, well, is there something that isn't here? Is there information that wasn't shared?
After the consensus workshop was held, we brought together all of the newsprint, all the information. We tape recorded the workshop. We looked at the transcript. And we did a content analysis of all the key ideas that were shared in the workshop. We identified emergent themes and kind of sorted and created order out of all this information that was shared.
We organized it into categories. And then at around the table, this next step, there were 23 people out of the original group, which was a really high percentage of people who attended the roundtable. It was held a month later, as I mentioned earlier. And before the roundtable discussion, all the participants were sent this synthesized information.
They also got a full transcript of the workshop discussion. I'm not sure anybody read it, but-- by this time, the people were-- the group-- these were really, pretty committed people. They were very, very-- and you kind of get this sense of sorting through the people who came, and this group of people and participants were more and more involved.
And they also were sent another copy of the research review, just in case they lost their original copy. So at this roundtable session, there was another facilitated discussion, and the group made final recommendations. And so that was the process. So what were the recommendations? And now we're kind of transitioning over to really talking about care transitions.
So the number one practice recommendation was reflective of this problem of people being siloed, and practitioners, and families all being kind of separately out there doing their own thing.
The number one recommendation was that there be these multi-disciplinary cross institutional collaborations involving all the different people who are participating in providing services that relate to health care and social support kinds of programs.
And again, the second recommendation was that there be increased coordination efforts between not only the provider's or services, but also the providers of funding streams because the funding-- it was recognized that the funding streams were linked very closely with the form of services that are provided, and how they're provided, and where all the gaps occurred.
Consumers, including frail elders, their families, and caregivers, should be placed at the center of the care transition process. And that was so important. That really-- that was really more of a cross-cutting theme, but, again, one of the most important recommendations was this idea of consumers and the information they need to know.
And out of that one, sort of a subcategory was the need for health literacy among consumers because there's so much information that a person needs to know. And the information just isn't there.
And one of the best things that came out of this was the dissemination of a lot of really cool information, that I'm going to tell you about at the end, that can actually be really, really useful for consumers and all these providers. And also, the importance of identifying and replicating best practice models that are emerging.
In terms of research recommendations, research should explore the relationship between best practices and specific measurable outcomes because what the group found out-- and this came, initially, through the research review and then from the discussion is that there are some really neat models out there.
There's this idea of a transition coach that Eric Coleman and his group have developed. And there's been-- they've evaluated the model, but there needs to be a more rigorous evaluation of that model because, at this point, it's one of those really cool, innovative programs that's only working in sort of some of the more innovative settings.
And so some of the questions that come up are-- what would this care transition coach model look like in a lot of different settings? So the importance of trying to advocate for resources for really, really in-depth, rigorous, gold standard type evaluation for these models.
And also, the group loved the participatory-- they loved the consensus workshop process. And so they felt very strongly that research in this area should be very participatory with practitioners, and consumers, and researchers all being involved and being able to share and generate their research questions-- be involved at all steps of the research-- in the research process.
In terms of policy recommendations, this issue of the funding being so connected with the types of services that are involved-- that was just such a clear problem. So the big recommendation was revamping these funding mechanisms so that they reimburse the cost gaps associated with care transitions.
Currently, health care practitioners are funded if something happens, but there's no funding for before it happens, keeping it from happening, after it happens to keep it from happening again. You know, so this sense that this sporadic funding is really not the approach that is necessary to provide the kind of care that keeps people sort of safe, healthy, and well for the long term.
And increasing funding for services that address care transitions and care needs more holistically. And another one of the policy recommendations sub-topics that were sort of embedded in these two were things like funding for education for family members. Whereas you know-- prevention-- a big emphasis on prevention as opposed to cure.
But there were some really interesting additional outcomes, in addition to the recommendations, that came out of the consensus workshop. One of the panelists who was brought in is a researcher, Dr. Carole Levine, and she has done-- she has an amazing story.
She came into this work because she was a caregiver herself. And she has done work over the last several decades. And she's a really big advocate for the involvement of family members in health care, and health care decision making, and care transitions.
And one of the things that I was the most impressed with about the group is that because they're working out there in the community, they really know how to pinch a penny and really get so much for the resources that are available to them. So we had a little bit of money to bring in these experts so they said, well, let's get her to do a workshop you know the day after.
Since she's going to be here, let's get the most from having her here. So they organized and implemented a workshop the day after the consensus workshop, which was hugely successful, where she did a workshop for discharge planners. And it was really well attended. And she got a lot out of it, too. She really enjoyed the experience.
And there's been this ongoing connection between the United Hospital fund. And I think that one of the things that she shared that was the most meaningful for her was operating out of New York City, it was very good for her to understand some of the care transition issues related to rural health care providers.
Another follow up consensus workshop was conducted by the same group including some more people, on just focusing on policy implications for the state of New York. So that's a whole other presentation.
I will say, it wasn't nearly as successful as this first one because when-- just a little short thumbnail version of what happened there was that the consensus workshop involved more policy makers and more practitioners, and there was a lot of blame and defensiveness.
And so that was an interesting learning in itself about what happens when you get those groups of people together, who have never been together. And there's a lot of stuff under the surface that has to be dealt with. So that was an interesting, and I think useful, project for the group.
So the implications of this work-- first of all, I think it's really clear that more knowledge is needed about the specific types of activities that can be most effective in bringing researchers and practitioners together.
We're just at the beginning of trying to understand what we can do to get these groups together to work and work together to not only respect each other, but to understand each other and be able to sort of know why-- know what the gains are for both of the groups.
And just really speaking the same language is another piece of why this is so important-- helping them work over the long term.
The data from this work suggests that the recommendations that emerged from this consensus workshop were very, very different from the recommendations that would have emerged from a workshop if you had just had practitioners or just researchers. So it definitely seems like a promising model to work with.
What we need to do, though-- we've conducted six of these, now. We need to learn how to evaluate the model. So far, what we have here is process and qualitative data. How do you evaluate this in a more rigorous way? And so those are some of the questions we're asking ourselves, in terms of the future of this work.
Also, how could this be modified? How could this model be modified for other different types of uses for-- and I think one of the suggestions that we've heard from other groups is, for instance, their-- and one glimmer of where--
One way to use the model might be to have, maybe, physicians and health care consumers participating in consensus workshops about how care can be delivered. So it could be used-- these kinds of things could be-- the model is very flexible. It could used a lot of different ways. And so we believe there's a need to further explore it and to evaluate it.
So in terms of additional resources, you can go to the CITRA website. We have a whole page about the consensus workshops. We're revamping the page. We have a manual up there that we're revamping, based on the work that we've done. But you can go and read about some of the other consensus workshops.
In terms of care transitions-- care transitions-- I told you that there was a lot of work that's being done in this area, at many different levels. And this resource, Next Step in Care, is the best resource, by far, that is out there. It's a website that was developed by the United Hospital Fund, along with a lot of other partners.
And this handout that I passed around will give you just a little bit of information about it. But absolutely you should pass this around. Disseminate it like crazy because I've already used it myself, with my own mother, and their resources-- such good, concrete resources, including things like personal health records, information about medication management.
And medication is a huge issue when you think about care transitions because understanding what the medications are, knowing how to use them, helping the frail, elder person comply with the medication that they're changing from and to-- it's a huge problem.
And it's often associated with these transitions-- often the cause-- non-adherence to the medication that people are supposed to take.
And information-- the way it's designed, you can go to the front page of the web site and their-- they even have a really neat little sorting thing. Like, you can say, where you're going to, where you're going from-- like from hospital to home. Click on Go. And there's all this information about going from home to hospital and what you need.
So it's very, very-- and Elaine Wethington, who, I just was telling all about your involvement in the consensus workshop.
ELAINE WETHINGTON: Sorry, Rhoda. I'm kind of an OSP coordinater. I'm sorry. [INAUDIBLE]
RHODA MEADOR: We all understand. So--
SPEAKER: This has been a presentation by Human Development Outreach and Extension at Cornell University.
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Rhoda Meador discusses the planning and implementation of the consensus workshop methodology for fostering dialog between researchers and practitioners in the critical area of care transitions.