In conversation with Hugo Campos on PCOR and data liberation in Medical Education

Hey there folks this is Larry Chu here and welcome back as we continue our discussion into the future of medical education and how patients can help expand the conversation about how we in academic medicine can play a role in changing the way health care is practiced by promoting by promoting participatory healthcare models shared decision making and by implementing new patient-centered outcomes research and comparative effectiveness research into our work. In this episode we’re going to learn about patient centered outcomes why they’re important why you’d want to learn more about them and use them in your work and some practical things to consider on both sides as we try to put these ideas into action Just a couple things before we get on with this episode, a few things to mention Don’t forget to click on the subscribe button over on the Medicine X YouTube channel that way You’ll get to know when any new videos if you like this kind of content are posted It’s also a way to let us know that you’re out there And you like us don’t forget to follow us on other social media channels for updates including our Facebook and Twitter channels Okay, so let’s dive into the topic of patient-centered outcomes research We recently had Medicine X II patient alumni and Presidential champion of change and precision medicine Hugo Campos stopped by our Medicine X studio to share some of his thoughts about patient partnership in medical education And I’m going to let you hear from him in a second But before I do let’s consider the value proposition behind patient-centered outcomes research and why this kind of work can bring value into our work as clinicians and medical educators While most of us are familiar with investigator-initiated clinical research which focuses on work that answers questions of interest to medical clinical researchers, many medical students are less familiar with patient-centered outcomes research This type of research focuses on answering questions related to outcomes that matter to patients Now why is this important? And why should we be teaching this better to our health care students? The short answer is so that patients can be better informed to make decisions about their own care in partnership with their health care team and Here is a real-world example Take for example the traditional investigator-initiated research view of prostate cancer in Germany which oncologists report as 5-year survival rates if you look across all of Germany it’s 94% as a five year survival rate Now the best-in-class prostate cancer clinic in Germany with the best treatments available has a five-year survival rate of 95% Based on this information. It’s hard to tell as a patient if it really makes a difference where you go to have your surgery But what if we taught our clinicians in school to share other types of information with patients and to use this information together with the person’s complete patient data and story to make a better more informed shared decision about treatment? And that’s where patient-centered outcomes research and comparative effectiveness research comes in. Take a look at this data that we could share with patients to illuminate that story. In Germany if we look at the patient centered outcome after prostate surgery outcomes that matter most patients the one-year incidence of incontinence after prostate surgery is 43% in all of Germany but for the best-in-class Martini clinic it’s just seven percent much lower and The one-year incidence of severe erectile dysfunction is 76 percent in all of Germany Following prostate cancer surgery, but it’s just 35 percent Less than half at the Martini clinic So let me ask you a question if you were a patient with this additional information Help you make a better decision about where you would want to go for care because I think it would and similar types of data could be presented comparing two different types of treatments and How they could help patients decide which treatments would be best for them and their desire outcomes? so if I managed to convince you over the last few short minutes showing you the value of patient-centered outcomes research and comparative effectiveness research, and how they can impact shared decision-making and patient choice How do we go about meaningful engagement and partnership with patients? At Medicine X. We believe in a framework. We call Everyone Included™ Which is a way of seeing the world where we bring patients and caregivers together with researchers and scientists on equal footing in a setting of mutual respect and inclusivity and We leave room for understanding on both sides So we can build trustworthy relationships that lead to Open and honest conversations that are the basis of meaningful engagement and co-creation You’ll hear more over the next few months about How we approach building trustworthy relationships at Medicine X. Now let’s start by hearing from a patient himself I recently asked you opposed to visit our Medicine X studio to share some of his thoughts about patient partnership in medical education and Everyone Included™ Let’s hear from him now So I have hypertrophic cardiomyopathy which is a genetic type of heart condition and I have an implantable cardioverter-defibrillator, you know it’s a device that collects a lot of data About my heart and and about its own function and the challenge with that is Patients have no access to the data streams that the device generate this this lack of access of activated me and I’ve been advocating for access to to data and more patient engagement with our health for all these years ever since being diagnosed and receiving the implantable defibrillator, and I was fortunate enough to be recognized by the White House as a champion of change for precision medicine in 2015 due to this work toward data liberation and more patient access and Autonomy in our health and health care I think the only way that we can engage patients is by imbuing in people a sense of Responsibility for themselves and in data and access to our own health data can can get us there So patient-centered outcomes research is really about figuring out what matters to patients the challenge with patient-centered outcomes Research is that even if you look at one specific Condition patients may have different goals if they’re in different stages of that condition Someone who’s just recently diagnosed may have Different goals than somebody who’s been managing a chronic condition for for a decade that shows how complex the topic is and how how difficult it is and How moving the target can be getting patients Involved in research is quite a challenge. I think even folks who live with chronic conditions Trying to get them engaged in their care is already a challenge So when you talk about getting people engaged in research, you’re you’re taking it a step further And I think there are patients who may be prone or more willing to participate for different reasons folks Maybe have a sense of altruism perhaps. They have somebody with a condition they want to help a spouse a partner a sibling or perhaps folks want to learn more about themselves in the same kind of idea or vein of the the notion of the quantified self or what moves the quantify self of self-knowledge through numbers And I think there is an opportunity there in research for us to help folks who are already Willing to engage in their health by providing them access to Data about themselves not only that but also give back research Results share with patients some of these results. There are so important and are often funded by public dollars. We have to figure out ways of creating a program that educates patients and trains people and prepares them to participate in research to learn how to partner with others how to collaborate all the way to how to bring their voice how to help others and how to represent the voice of other patients. I think it’s critical for patients to be included included in medical education. I think bringing the patient narratives to medical education the patient stories will will help us create a new generation of doctors who have more empathy and and have a lot more joy for the profession of being a doctor and And I think we all gain with that and patients patients win because patients get better care and and know that their voices matter and know that that they have a role in their own care and And doctors win as well because hopefully they they they find some of Some of the joy that is being lost in the practice of medicine So to wrap things up How does this relate to medical education? We learned that patient-centered outcomes and comparative effectiveness research Can be powerful tools to aid patients in making better decisions about their own care. We also learned that patients have expertise to contribute to conversations about their own health care But they often don’t have access to their own health data Or aren’t given tools to be active participants in their own care as Hugo Campos said in his own commentary Giving people access to information is a way to imbue them with a sense of responsibility in their own health care as Medical educators we can help our students understand that patient-centered outcomes research is complementary to basic science research and clinical Comparative effectiveness research as sources of information that can be used to empower patients in the shared decision-making process We can also help our students to understand that different patients can have different goals Or outcomes of treatment that may affect the decisions they make with that information and as Hugo mentioned that same patient may even have different goals during different stages of Their condition such as when he or she is newly diagnosed compared to after living with the condition for a decade Finally, medical educators might reflect on the importance of patient stories as empathy building tools that remind both sides of the promise and joy that resides in the practice of medicine What’s on your mind after watching this episode? We want to hear from you leave us some of your comments below if you’re an educator who’s partnering with patients Let us know what’s working for you and what you found is your greatest challenges and Opportunities if you’re a patient how have you seen partnership work in medical education? or research from your side of the process And how could you see the process improving? For everyone else out there? What is the one misconception or misperception you think the other side has about you? That you’d like to clear up in order help build better working relationships going forward? Well, that’s it for now. I hope you’ve enjoyed this episode A quick reminder make sure if you haven’t done so already that you subscribe by clicking that subscribe button And if you liked the video click the thumbs up button And I’d really appreciate it if you’d share the video with other people you think would like to see the content that we’re posting here On YouTube that’s it for now. We’ll see you next time

Leave a Reply

(*) Required, Your email will not be published