What Hope Means for Patients

Carol Graham  0:00  
And you know, we're the, if not the at least one of the wealthiest countries in the world. We spend more per capita income on health care than any country in the world. And yet our life expectancy rate is falling, and people are dying disproportionately of self inflicted mortality, and we just go on like nothing happens.

Terry Wilcox  0:24  
Today, economist and author Carol Graham details lessons from her upcoming book focused on a positive outlook. Her book, The Power of Hope, presents the case that hope should become a measured statistic in economic and social wellbeing. Her story and thoughts up next. Welcome to the patients rising podcast. I'm your host, Terry Wilcox, CEO of patients rising. I'm joined by my co host, who used our break in August to avoid burning, burning man. He's back Goldberg, co founder of the Center for medicine in the public interest. Me but

Bob Goldberg  0:58  
Who needs mudslides at Burning Man then when I get to share the stories of wonderful people like Carol Graham right here each week. Not that's a very low bar. But all things being equal. I mean, this is I love doing this. So glad to be back.

Terry Wilcox  1:14  
I'm glad you are back. I'm glad to be back as well.

Bob Goldberg  1:17  
On the lineup for today's show, Medicare has announced the first 10 drugs for price controls. We'll discuss how the process is still far from perfect. And you know why patients were an afterthought in this decision making process.

Terry Wilcox  1:34  
Well but first, Bob had the pleasure of sitting down with Carol Graham and author and economist focused on some metrics we don't traditionally take into account in health care, like hope, which can be powerful for patients living with rare chronic diseases. Now, unsurprisingly, early on when economists and psychologists began working together, people thought this was untraditional to say the least,

Speaker 1  1:58  
People thought we were nuts really early on. But over time, I think we realized that a lot of the traditional standard economic models which take the human out of behavior, and they take out emotions and irrationality and concern for fairness, and all the all these different things that, you know, keep people going, they've sort of taken that away to build quantitative models. Anyway, over time, we started having some traction in the field. And then a couple of things like the financial crisis. And now COVID, on a scale of an additional wave has sort of really woken people up. And that includes us policymakers about the importance of human emotions, mental health. 

Bob Goldberg  2:31  
Now, interestingly, Terry Carroll was originally doing a lot of work focused on the exact opposite of hope, which is despair. 

Carol Graham  2:54  
Since then, I've been looking at a whole bunch of other trends related to the negative effects of despair, you know, the positive side of that is okay, what is hoped? What's the analogue to despair. And I don't want to spend the rest of my life only working on despair, right. That's where I sort of got into this. But I started realizing that we didn't measure hope, at least not in the standard, subjective well being metrics that we were already measuring regularly. And the British government and several other governments now include in their statistics, but hope seemed to matter most to people's long term outcomes, because hope is not happiness at the moment. And it's not just raw optimism about the future, it's kind of it's, you know, the belief that things will get better, but that you can make them better.

Terry Wilcox  3:42  
 So, what does hope have to do with health and chronic disease? Carol says quite a lot.

Carol Graham  3:49  
I think that the relationship between health and hope is probably some sort of two way causality. I don't think being hopeful will cure terminal cancer. But I think being helpful when you receive a diagnosis that you may be able to overcome is huge, right? It's very, you want to try and do something about it. And you're much more likely to cooperate with all your protocols. And also more hopeful people are more likely to trust others. And as you, as you say, have communities and families and less likely to be lonely. And all of those things help if you have a difficult illness to get through. 

Terry Wilcox  4:28  
Now, I could not agree with this more. I believe that that is always been missing. And I think Bob, you and I, over the years have talked about it countless times that hope does matter. And hope is a metric. It is a measure

Bob Goldberg  4:41  
Yes. And better health does lead to more hope. And we saw this with the HIV community. We've seen this in the muscular dystrophy community. And what hope really is, is it's a forward looking way of living. It's been basically not saying, oh, you know, you know, I'm gonna win the Triple Crown and baseball and most optimistic note hopeful is, I am going to spend every day hitting off the tee, improving my skills, because this is what's important to me. And it's quite obvious to us, Terry, that when somebody has either access to a new medicine, or improved access to, you know, continuity of care and navigation, that that changes the people's perception of what is possible in their lives. And that, in turn, is directly related to the amount of money that we spend on going to school and traveling and having weddings, and raising kids, etc. So I'm glad to see that economists are really, at least Carol in this country is looking at this is metric.

Terry Wilcox  5:55  
Will definitely it's something that we need to incorporate more, and I think, countless times and I'm fairly certain, we're not the only advocacy group to say so but even in comments to ICER, and others. This is a metric, this is something that should be measured. And what's really interesting is that we don't already incorporate or quantify hope in any of our metrics that the UK does.

Carol Graham  6:18  
We worked with a British team that put the metrics into their stats, and they now have a whole, they are replacing GNP, they're not doing anything crazy. But they have an alternative, you know, in addition to in their annual population survey, where you can look at trends in well being across people across places across races over time, you know, if you see, for example, you know, despair increase, or, you know, happiness increase a lot in a particular place, something's going on. It's a warning indicator, right? The same way that it was in the US, but I was using my Gallup data, there were no official metrics to do that.

Terry Wilcox  6:59  
Now, so Bob, in your discussion, why did she say they use these metrics, but not us? Why is the UK doing it? And not as that seems sort of backwards? Based on what you and I know, right?

Bob Goldberg  7:10  
Yeah. Well, I think the UK researchers realize that hope or despair, you know, it's a cycle that can be hard to break out of, but if we can find ways to do it and measure it, it's a way of, you know, providing another kind of health service that can show up in new medicines, but also in the kinds of relationships that people that are lonely or depressed, need to avoid that cycle.

Carol Graham  7:42  
So I think if you are in a community that's full of despair, and everybody's dying of overdose, and suicide, it's pretty hard to be hopeful that things will get better and nobody around you is telling you they will, right. I mean, growing up, but a context like that, I think it takes somebody of incredible character to sort of break out of that, and some people do for sure, I mean, their stories. So I think that's part of it. And part of it is the idea that you're falling behind rather than getting ahead. Even if you're getting ahead slowly, that obviously creates a very different mindset.

Terry Wilcox  8:18  
Well, and while we aren't quite there yet, Carol adds that we're taking steps toward accounting for hope and mental health slowly but surely,

Carol Graham  8:26  
one thing and here I think, our private sector, not all of it, but some of it has realized that there's this link between Well, being an employee productivity, a very strong and well documented one, this is not, you know, there are myriad of very robust published studies showing this link. And so it's actually profitable for companies to invest in the well being of their employees, they stay longer, they work harder. And then it turns out, it's often not higher salaries, that keeps people happy at work or engaged at work. It's having a purpose, it's being respected. It's having autonomy, having, you know, not being just a cog in a machine. And so until the private sector or some companies are investing pretty strongly in well being, it's slowly very slowly trickling into policy discussions and surveys.

Terry Wilcox  9:22  
So Bob, any idea on how we can actually accomplish this here and in the US,

Bob Goldberg  9:29  
We discuss it briefly. And then we're going to continue to have this conversation and first thing is, you know, we have to start asking, at least for what's let's focus on people with chronic disease. We should start asking people, you know, how being healthy changed their outlook, their sense of purpose, a sense of being respected their sense of being able to move forward with their lives. And one way to do that is through groups like patients rising where These sorts of surveys can in fact, be run. And the other thing is that the cost of doing so is very low. You know, we don't have to tear up everything about our current metrics. But we can add this in. And is she documents in her book, you can measure this. And you can measure the cause and effect relationship between better health or better access to care, and improved hope.

Terry Wilcox  10:29  
Well, one of the things that I do now and why I love this book in this interview, is that, Bob, when you look at countless interviews that we've had with patients with rare and chronic conditions over the years, this word, I would say, hands down, comes up the most of any other word. Absolutely. And if you're going to take one word, and you're going to measure it, this is your word. So where can people learn more about Carol and her book,

Bob Goldberg  10:55  
They can go to the Brookings Institution website, I think there's links that we'll have in the show notes, and they can pick up a copy or read one verse. Many essays on this topic, which is based upon the book for themselves.

Terry Wilcox  11:17  
This episode of the patient's rising podcast is brought to you by the patient's rising helpline, this is an absolutely free service. It is a wonderful way to get all the questions you have about things like medical, transportation, health insurance, caregiving, all of them, answered by our navigators, you can call you can email, we will handle it. Our navigators have handled countless issues for patients and caregivers just like you. If you or someone you know has a health care question, challenge or issue, we are standing by and ready to help to get in touch, leave us a voicemail, or send us an email using the link in the show notes.

Terry Wilcox  11:58  
Now before we go today, we wanted to mention that Medicare has announced the first 10 drugs for price negotiations. It's the first round of the new negotiation program since the implementation of the drug pricing reform law. Now, it's still not really taking patient experience into account, as you and I just discussed, we had an entire show about the word hope that is certainly not being taken into account. So in June, patient's rising issued a set of principles that called on CMS to incorporate patient voices into this process. And we will have a link to that in the show notes. Now, our three main goals include CMS must adopt a patient first approach, they must make patients the primary source for determining a medications value, and CMS must increase transparency and remove access barriers. We'll have a link to those principles in the show notes. Bob, do you have anything else to add?

Bob Goldberg  12:54  
No, but we need that input, along with, you know, maybe some amicus briefs in support of the lawsuit saying that the price controls as they're structured, are unconstitutional. So there's a lot of work to be done.

Terry Wilcox  13:11  
Yes, there is. And we are a long way from really rolling this out in a way that any patient is really going to understand or benefit from, if they ever do. Yeah.

Bob Goldberg  13:21  
And we do have more episodes on the way. So make sure to follow the podcast on your favorite podcast app, so you can be notified when we return.

Terry Wilcox  13:31  
Until then, for Bob and everyone at patients rising. I'm Terry Wilcox, stay healthy.