Gregg Masters 00:10
PopHealth Week is brought to you by Health Innovation Media. We bring your brand narrative alive via original or value added digitally curated thought leadership content for omni channel distribution and engagement. Connect with us at www.popupstudio. productions. And welcome everyone. I’m Gregg Masters Managing Director of Health Innovation media and the producer co-host of PopHealth Week. Joining me in the virtual studio is my partner, colleague and lead co-host Fred Goldstein, president of Accountable Health LLC. On today’s show, our guest is Amy Price PhD, a Stanford University Senior Research Scientist for anesthesia informatics and Media Lab, Dr. Price’s background is in international relief work, clinical neurocognitive rehabilitation and includes service on boards of multiple patient organizations. As a trauma survivor , she developed a flexible mindset to relate to all stakeholders and cultures. Her experience in training has demonstrated that shared knowledge, interdisciplinary collaboration and evidence based research is the voice that will develop the future. Follow her work on Twitter via @amypricephd. So Fred, with that introduction over to you.
Fred Goldstein 01:33
Thanks so much, Gregg, and Amy, welcome to PopHealth Week.
Amy Price 01:36
I’m honored to be here. Thanks for asking me.
Fred Goldstein 01:39
It’s really a pleasure to get you on. We were introduced through a close friend of all three of us, actually, Prashant Natarajan, who’s been on this show as well. And it was really such a pleasure to talk to you. We went on for quite a long time. I know as I recall. So why don’t we start with give our audience a little sense of your background?
Amy Price 01:57
Well, who am I? Right, wonderful. So I started out we my husband and I did international relief work for many years. And then we had an unfortunate car accident. And I ended up with brain, spine, about $4 million in injuries. And from the brain, I decided to rehab and that meant going back to school. And I started to notice in my journey that patients and members of the public, they didn’t know the language and they didn’t have a voice. So I thought I would start where I was. And I would create a bridge between research and medicine and the public. And so that we could all like play in the same place playground without making horrendous adaptations for each other, and making that all a whole different thing entirely. What my my goal, my vision was to be trained to be able to work, what we do into the workflow of researchers, clinicians, patients, and to develop relationships so that the focus could be on that what we do together to build future for each other.
Fred Goldstein 03:16
And now you’re working as I understand at Stanford and BMJ.
Amy Price 03:20
Yes. So, when I was I didn’t do the original, traditional route. I just started. And they finally they told me that actually, if you want to run a grant, you need a fellowship. And that was like kind of a precursor. So I said what’s a fellowship. And so they told me a little bit. So I thought of the two places that I would like to do fellowship if I had a choice. And so I went to the BMJ, and I told them, I need a fellowship, and I’m free. Like, literally, I won’t cost you any money. And they said that we don’t do fellowships that way. And I said, like, do you want me or not? And these are, this is what I can bring. This is how I can help. And they said, of course, and then I went on afterwards, to work with them as a for the patient partnership and as a research editor. And I find it’s a it’s a wonderful combination, because I have the recent research methodology from Oxford. I have the editor space from from BMJ, and I have neuroscience from the Open University. So I have lots of places to work from.
Fred Goldstein 04:39
That’s really fantastic. And speaking of you know, you’ve talked about this patient partnership and trying to bridge that gap, which is so critical and we’re now beginning to hear more and more from patients. Our voice matters. We want to be involved. We don’t want to just be the subject of this. And I know you published a piece called patient and public involvement research journey to co-production in BMJ, what what is that? What is the co-production in terms of research? And how does that work?
Amy Price 05:05
So if I’ll use myself as an example. So if you work to work with me on a research project, you would be involved as a participant, partner, member of the public, on every aspect of that research that interested you. So I retrain you for that specific purpose. But that’s that, that specific role. So for example, it wouldn’t make you a statistician, but it would make you able to understand statisticians, the stuffs the statistics on the project that you’re working on. If you wanted to be involved in interviewing, I retrain you, I would train you to interview or have other people train you to interview, the more that they understand about research in general. And the more health literacy they gain, because we all learn more by doing than just watching, you know, a lecture, or even answering questions. But when it’s actually hands on, it’s good for all of us. And it builds relationship.
Fred Goldstein 06:10
And, you know, I’m a, I’m an individual involved in a research project myself, but it’s nowhere close to that kind of a relationship. So how is this been received? What are researchers think about this? What about patients and their involvement, how they got felt about this type of an activity?
Amy Price 06:28
Well, every patient or member of the public that has worked with me, in the past, would welcome the opportunity to work with me again, and they often ask me, Do you have another project that we can work on? and researchers are the same, because if you bring it so it is something that they can do within their workflow, and you don’t bring a lot of extra work or rules, and you make it work, then they are really happy to have the patients on board. And people say even at the BMJ with their papers, sometimes they’ll say, we like what the patient reviewer said, much more than what the other reviewer said, because that brought up brought up a point that we could really think about and do something about. And even if we can’t do it for this research project, it’s on our radar for the next project. And, and so it’s generally positive. And if it’s not, I mean, it’s really important with real relationships, that we work on that it’s not easy to be in partnership with anyone. And, and so it’s it’s all about kindergarten, and print principles, like Do unto others as you would have them do unto you share your stuff. Don’t touch other people’s stuff. Unless you have permission, you know that those kinds of things aren’t keep your mouth shut when, you know, stay positive and reframe things, think of the work that someone else put into something. And if you don’t understand, ask, if somebody says something that, that grates you or it comes across the wrong way or it hurt you speak up, speak up and say, you know, when you said that, I felt like this? Or is there another way that? Is there another way that we could do this? And I, as parties remain open like that? I mean, you develop relationships that last a lifetime. So it’s, it’s great. You make friends along the way? And what are the I know, there have been some studies you pointed out that showed some advantages to doing this? What are some of the things that there’s some of the outcomes that have been improved by making it a co-production? Well, there’s, there’s several ways that co-production improves things culturally, often, we think we know about culture, but we don’t. And we may, we may know about that culture, how nationalities behave together in one country. And those same nationalities will be completely differently within another culture. But we don’t know that because we we can’t be everywhere, and people that are a part of that culture, and that are a patient, they know that from the ground up because they live it every day. So they can help us they they can help with phrasing how we would phrase things. We may think it sounds beautiful. I remember the first time I did a test questions, or an online program, and my colleague, Professor Larry Chu and I were working on together, and we thought they were easy, but no one could answer them. So we had to go back to the drawing table, and we had to peel aside, you know, all those layers of years of training. And we we asked, we asked our participants, what kind of question do you think would go well with this content? What kind of question could you answer? What was important To you, and that those adjustments make the difference, it makes a difference. It can increase your recruiting rates, sometimes 100%, definitely, it will increase retention. And it can also increase something that this is a word that I really hate because it sounds like rules, but compliance, like any answer. And the reason why is because when people understand why they’re doing something, and how important it is, they’re more likely to do it. And if you can give them just that information without weighing them down with your whole policies and procedures, and share the share the information that’s needed to do the job, that also and that also increases the validity of your research. Because you are getting the something that’s not staged, you’re getting your research question answered, it might not be the same question you thought you were asking. And it like all kinds of different perspectives can come. But when you combine that with the numbers, research, it can make a phenomenal impact.
Fred Goldstein 11:14
So is this perhaps the future of research moving more into all these various trials, etc, being co-productions?
Amy Price 11:24
I believe so. I mean, I believe, I believe it as when I first started at Oxford, they did a short scoping review to decide if my project was suitable. And they told me that there wasn’t enough on the literature to make it worthwhile, and it might be a passing fad. But now, I’d say, and I said, I can do it anyway, I’ve paid for it, I’m doing it. And I never seen and I just now asking for public and patient involvement. Most major funders in the world have seen a benefit in doing just that. And because in the end, if you have an implementation of a product or device, and you don’t have end user buy in, then you’re not going to be able to implement that. And if you don’t ask the actual people that are using the device on daily basis or the intervention, then you’re not really going to know what went wrong, or what went right, or how you can make it better. And I’m finding like there’s a trend, because I’m working with the World Health Organization on some research, and we find a for publican protective gear, and we’re finding that the manufacturers we have taken things back to them before it’s ever in front. As soon as we mentioned it, they are going back and changing their product to be more user friendly. So I mean, I think that’s really progress.
Fred Goldstein 12:57
That’s really fantastic. I also get this sense for you, Amy, that when somebody puts a wall in front of you, you figure out some way to get through it or over it. Is that sort of been some of your makeup?
Amy Price 13:10
Oh, you know, I don’t really think that no’s a good word. So I really think that if, if I want to do something, then I’ll be sorry, if I don’t try. And so if so if it doesn’t work one way, then I will, I will try another way. And they will work around and if I have to change myself, change my environment. Change my training. I’m up for that. I actually how I met Prashant is he worked with us with doing training for people for public and patient involvement, and now in the area of intelligence and machine learning. Because all you see everywhere are all these articles saying are patients for it and against it. They don’t even know what it is. They don’t know they can’t be for it and against it because they don’t know the real like advantages or disadvantages. So you don’t have enough knowledge to make a vote. So it’s not a shared enterprises its not a shared decision. And my first thought this was one of my first no’s, from the brain injury, all my math skills, which were minor to begin with, were gone . And I wanted to do brain rehab on myself because there wasn’t very much available. And I needed to know what to do, what would work, what kind of learning things work. So somebody said, Well, if you had a cognitive model, if you build a kind of model, you could do that. And I said, Well, I don’t know anything about that. And they said well, you just need a lot of nice math skills. So If I sign up for the advanced statistics class, not even knowing or remembering what the infinity symbol stood for, I managed to pass the initial test to get in. And then I expose my ignorance when I was there. And the reason I did that was it was a precursor to build the model. And so I actually was able to build the model. That would have been a no on every front, I was able to build the model, and I was able to help myself, I recover brain function, and also several other people. So no, no, it’s just a word.
Gregg Masters 15:41
And if you’re just tuning in to PopHealth Week, our guest is Amy Price PhD, a Stanford Research Scientist in anesthesia informatics and Media Lab. For more information or to learn more about her work, follow her on Twitter, @AmyPricePhD.
Fred Goldstein 16:01
That’s fantastic. And I know as we’ve talked, and you’ve written across a broad spectrum of different areas that are really fascinating. And one of them another piece you wrote, I think it was my path, through my my pandemic grief and the Japanese art of Kintsugi. Can you talk a little bit about that article and what Kintsugi is,
Amy Price 16:23
I sure Kintsugi is a Japanese tradition. I don’t know about you, but almost everyone has had something precious broken an object of car. You know, sometimes we break people, and we don’t mean to. And when something’s broken, it also does something to the relationship, because it’s almost like you could never face that person the same way. And the person that’s broken, it’s difficult for them to, because just to be able to offer forgiveness and to trust again, it’s tough. So my husband actually died during the pandemic of COVID, before the vaccine, and there was a lot to forgive, because he was infected by a healthcare worker in an institution, and we had kept him safe up to that time. And then there were work situations, there were all kinds of things in my life just being in that position and isolated, it was really tough. And it came across the Kintsugi . And the beautiful thing about it is that when you mend something for someone else, that’s healing to them, because you’re creating for them. And so they would take pottery, or jewelry or something that had been broken, and they would mend it back together with strands of gold. And so the gold and the pottery would create something more original and beautiful than the original product. And in life, no, probably everything that we love one way or another, we will end up losing, it’ll end up changing, something will happen. But what will become of that one, and the Kintsugi, is as you and as your community, that medns together for you to become stronger together, become stronger together. And that in rather than people would say, Oh, you’re just taking this grief really well. What What kind of comment is what kind? You know, and just because people, they don’t know what to say, and that’s okay. It’s okay. Right, because at least they cared enough to say something. But the thing is, there’s a lot in society that says heal yourself. And there’s a time when we have to realize we’re not going to heal ourselves. There’s it’s going to take time, and it’s going to take others and the very people that caused us brokenness, maybe also part of our healing. And that’s the that’s the way of the future. That’s the future to, to bring healing through relationship to each other. Because relationship is the most important thing ever. You know, we had a wonderful conversation, but I didn’t really know until after the our first conversation, who you were or what you did, but it didn’t matter. And if everything that you had, after we had had that conversation had been stripped away from you, I would have the relationship and I don’t care who you who you are or what you do. I care who you are. That’s what matters to me. Right? And I think it’s the same with all of us. How do how, how do people see us? Because our jobs, our roles are people that are around us, those things all change, and nothing in life is stagnant. So how do we move together to the next chapter? or in life? And what, what can you do if you’ve hurt someone, and, you know, you say you’re sorry, it’s never enough. And you feel what you can do is, is you, you can be a part of their healing also. So that was why I wrote that. So not only healing could flow through me, but also so that I could heal because when you’re going to heal others that maybe I had hurt along the way. Because when you’re going through things like that, you’re not at your best normal, consider understanding self. Because what we are tends to, it comes out through our words and our actions. And so it was one way to say this, this is a way we can make a difference. And to recognize that in something like a pandemic, I lost 50 people to the pandemic, six, seven relatives. And, and the others I knew well I work with or something had happened. So it was like that, the grief would start to heal, and then another wound would open, everything would come back. So it became is this ever going to be over? And then with the, with a Kintsugi, and that concept, it allowed me to see past it, and also to see what I had gone through through other people’s perspectives. That also went through the same kind of things, maybe being the the clinician that was trying to help, or the healthcare worker that infected someone, or another family member. So it was a piece that was kind of a it was personal, it was hard to write. But it was important.
Fred Goldstein 21:46
Yeah, it’s, you know, as I heard, you talk about it. And as I read it, it’s so powerful, and this concept of broken, but putting that back together. And gold lining the broken edges are pieces that then highlight them, but also in a sense, make them better, was just fascinating. And you’re talking about this, you know, now given COVID, and what’s going on with different people, and all of us, you know, at one point or another have been hurt or hurt others, it’s just a beautiful way to look at it. And to actually not just read or see it, but do something about it. So I hope that that piece, and I’ll make sure we push it out to get’s a lot of reading because I think it will make a difference. And I’m sure it already has in people and just myself and how I look at things. Unbelievable. So thank you for that really
Amy Price 22:44
Well thank you I mean, I think life. There’s a verse actually, that says that we go from beauty to ashes. And I’ve watched in hurricanes, where everything is flattened, and then you go back a few months later. And you see, you know, in Florida and you see the growth restarting and the wildlife, it doesn’t really die, it just emerges another way. And even when we think that we’re at our rock bottom, we really aren’t, we’re just set to reemerge another way. And if we have the hands of others along the way that reached out a hand and said, I believe in you, you can make it. Every gesture like that every smile is healing. No one of us can fix the fact that a horrible thing happened. But we can make the journey better for each other
Fred Goldstein 23:35
by getting here by getting together by sharing in relationships, etc. makes so much so much sense. I want to briefly in a little bit of time, we have, discuss just one more area that you actually a third one completely different work done. And that was masks, and early on the issue we had with lack of PPE. And I know you were involved in a study on that. And so my recommendations out of that.
Amy Price 24:01
Yeah, you my colleague, Doctor professor or Professor Larry Chu. We saw that there wasn’t a lot of evidence. So we went to experts. We had a Nobel Laureate at Stanford, Steven Chu, Professor Steven Chu, and another professor Yi tre and they were physicists and material scientists. So they knew what went into the mask. And we said, can we make that our masks? Why should? Why should the public have leftovers? Because even health care workers are going to be public when they get off work. It’s gonna affect all of us. We need evidence and we need out we need better masks so they help we tested masks and as a result, the World Health Organization and the CDC improvee their guidance on on the masks. And it was a wonderful group that we worked with because there were people We’re working on the virus people that were working on the fit of masks, people that were working on the decap decontamination. And we, we had meetings every week, and we learn from each other. So everything I know about viruses, I learned from those meetings, everything I know about physics, it’s the same. And they’re, you know, we’re just some fascinating things that came out. And it was just a privilege of a lifetime. I’ve might supervisors in Oxford even said, they said, Amy, they said, We waited our whole life for a pandemic. And here you are in the middle of what. So, so that’s true. And I, it’s good to be resourceful and reach out, beyond who you know, and what you know. And realize when you don’t know enough, and ask and ask, get better information, get people working together. Because even, you know, our symphony, everyone was can probably play but better by ourself, then a bunch of people in a group that don’t know each other. When those instruments come together with skill, and with practice, it is a unique and beautiful sound, that can’t be reproduced any other way.
Fred Goldstein 26:16
Well, that’s just an unbelievable way to finish this show Amy, I want to thank you so much for coming on. We’re gonna have to get you back. Because you’re really in so many different areas involved, the patient expertise, the patient involvement is so critical. So thank you so much for joining us on PopHealth Week.
Amy Price 26:33
Thank you. It’s been wonderful. It’s been wonderful to be here. And I’d love to come back. I love your show. And I’ve been watching the carbon, carbon dioxide and the the rapid tests and the different things that you’ve tried. And I love the way that you’re staying current and meeting the very questions that we’re all asking. Thank you so much. It’s an honor to be here.
Fred Goldstein 26:57
Well, thank you, Dr. Price. Amy, it’s a pleasure to have you and back to you, Gregg.
Gregg Masters 27:00
And thank you, Fred. That is the last word for today’s broadcast. I want to thank Dr. Amy price for her time and insights today. For more information. Or to learn more about Dr. Price’s work. follow her on Twitter, via @amypricephd . And finally, if you’re enjoying our work here at PopHealth Week, please like the show and the podcast platform of your choice. Share with your colleagues and do consider subscribing to keep up with new episodes as they’re posted. We stream live on HealthcareNOW.com Monday through Friday at 5:30 am 1:30 pm and 9:30 pm. Eastern or full you left coasters like me 2:30 am 10:30 am and 6:30 pacific for PopHealth week my co host Fred Goldstein. This is Gregg Masters saying please stay safe everyone. Bye now.