[MUSIC] Let's talk a little bit about stakeholder engagement, as it applies to quality improvement. Our project with PCORI, the Patient-Centered Outcomes Research Institute, is about venous thromboembolism prevention. So, we worked on preventing VTE, and we were working to empower patients, and enabling patient centered care via health information technology. So this was a three year project that we've since finished, and I'd like to tell you a little bit about it. And specifically, how did we engage patients to do this work? So we had three main objectives. The first was to focus on patients making informed decisions about their preventive care for hospitalized patients, for prevention of VTE or blood clots. And the main focus was going to be on patient-nurse communication. Our second objective was to empower patients to take a more active role in their VTE preventive care. And thirdly, we were going to identify and facilitate active engagement of patients who were not administered doses of VTE prophylaxis using a real time escalating alert. I'll explain that in a minute. So who were our key stakeholders? So, I worked together with a group here Johns Hopkins, the VTE Collaborative. I'm a trauma surgeon, I have the hematologists, so we've got physicians. We have pharmacists, we have nurses, we have researches, we have information technology people, we have computer programmers. Those are the groups that we have on the research dedicated team. We also have key stakeholders from the patient realm. So we worked with three large national organizations, the National Blood Clot Alliance, the North American Thrombosis Forum, and ClotCare. Three large national organizations, as well as our local Johns Hopkins Patient and Family Advisory Council group to work on VTE prophylaxis, and get the true perspective from the patient side of things. So what did they do to help us? So, as you can see, and you can get more information about our project at the PCORI website. We're listed under the Research in Action, some of our results are now reported on the PCORI website as well. But we really target patient-nurse communication as one of our critical aspects of what we should be doing. And we had key stakeholders who were nurses, who were patients, to give us information and to give us feedback on what we should be doing with our projects. In fact, when we were asked to do a story about our project in The Wall Street Journal, so, I was one of the people that got interviewed for the article. But we also had my main research nurse, Doreen Schafer, was quoted in the article, as well as we gave them a patient stakeholder, a patient who's actually involved in one of our studies. And really, it's important to get the patient's perspective on the research, and the projects, and quality improvement implementation that you're doing. So we actually asked them what VTE education do patients really want? So we started with a Delphi survey. So what is that? It’s an iterative process involving multiple rounds of surveys and feedback and revisions that we can then kind of come to a consensus upon. So we engaged these patients and their family members. We actually recruited all the respondents via the three large national organizations, and our patient advisory council of Johns Hopkins. We relied upon them to put it out there on their websites, on Facebook, on Twitter. Through these organizations, or via email to their listserv, and we got over 400 respondents who didn't just do a survey once, they did at least three surveys, every one of them did three surveys. So we asked some questions, how do you want to learn about VTE? As it turns out, mostly patients and their families want to learn from a doctor. However, there are also people that want to learn on video, via paper, from a nurse, and a smaller number who want to learn from a pharmacist. So we realize there are other options. Even if the doctors are unable to do all this education directly, there are these other three options, video, paper, and nurse, which are nearly tied for second place. So what do you want to learn about VTE? So through this iterative process, we've got these four main categories that patients and families wanted to know more about. They wanted to learn about symptoms, prevention, risk factors, and complications. So we said great, that's some good data, we'll be able to do that. How much are patients willing to read? So it turns out, over 90% of patients are willing to read one or two pages. As you start to get longer and longer and longer, the numbers go lower and lower and lower. So we decided okay, well, they told us they'll read one to two pages, that's what we'll make. How about a length of the video? Some people are willing to watch a 20 minute video. But if you make it 20 minutes, you're certainly going to lose the people that were in the 5, 10 or 15 minutes. So, we took this data and tried to come back with an appropriate length video based on the feedback. So we wrote this paper up, and I highlight two of my coauthors. So, the rest of the coauthors on this list are my research team. It's the people I mentioned, it's a postdoctoral research fellow is the first author. It's an information person, it's a medical student, it's a nurse, it's a pharmacist, it's me, it's Dr. Pronovost, who's a quality and safety expert. The two people in red are patients. Susan and Paul are both patients who've publicly told their story about their pulmonary embolisms. Susan had an in hospital PE event. And they were key stakeholders in this project. And it was important for us to include them on this paper as authors. You can't just make this stuff up, you have to actually ask what people want. So these are some pictures from some of our meetings. There's one out at the northeast market in Baltimore near Johns Hopkins Hospital. Three or four blocks away, we go out and talk to the public. The top picture is key stakeholders from the National Blood Clot Alliance who came to speak with us. It's their executive director and a couple board members who come and talk to us, and it's me and part of my research team talking to them. You need to hear from patients. And on that bottom side, it's patients, real patients with a real voice telling what they really want to know and what we really want to hear, and we need to listen to them.
