Why you should care about the shakeup at NIH: Sean Morrison, Ken Covinsky, Stacy Fischer

Eric 00:16

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:19

This is Alex Smith.

Eric 00:21

And today, Alex, we got some guests. We’re going to be talking about what’s happening at the NIH and bigger pictures. We’ll talk about actually our topic. We’ve got a fun thing about that coming up. But before we do, who is with us today?

Alex 00:37

So we are really happy to have three great guests who are all returning guests to GeriPal for this kind of emergency podcast that we have quickly put together here. First, we have Stacy Fischer, who’s a geriatrician and palliative care doc and researcher and leader at the Cancer Prevention and Control center at the University of Colorado and Science Advis for the American Academy of Hospice and Palliative Medicine. Stacy, welcome back to GeriPal.

Stacy 01:03

Thanks.

Alex 01:04

And we have Sean Morrison, who’s a geriatrician and palliative care doctor and researcher and chair of the Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai. Sean, welcome back to the GeriPal podcast.

Sean 01:17

Thanks, Alex. Great to be here.

Alex 01:19

And Ken Covinsky, who’s a geriatrician and researcher in the UCSF Division of Geriatrics. Ken, welcome back to GeriPal.

Ken 01:26

Great to be here.

Eric 01:27

And before we go on to the topic about the shakeup at the NIH and why we should care about it, somebody has a song request for Alex. Stacey, is it you?

Stacy 01:37

I do.

Eric 01:38

What’s the song request?

Stacy 01:40

Yeah, I would like to request Times They Are a Changin’ by Bob Dylan.

Eric 01:45

Why did you pick this song?

Stacy 01:47

I think when you hear the lyrics, it is. It could not be more perfect about what we’re trying to do. And times, they are changing and we have also the power to change the times.

Eric 01:58

Wonderful, Alex.

Alex 02:00

I can’t believe we haven’t done this. Unless Google’s failing me, we haven’t done this. This is a great choice. Here we go.

Alex 02:12

(singing)

Eric 02:41

Thank you, Alex.

Alex 02:42

Thank you, Stacy. And let me just say, Sean and Stacy sent me, like eight songs, which would be great for this podcast, and because time was pressing, I chose the one that seemed like, most obvious and easiest to play that we hadn’t done before. Thank you, Stacy.

Eric 02:59

All right, we’re going to try something new for this podcast. And Sean, I’m going to start off with you is, you know, most of our listeners. When I look at the amount of people listen, like the most amount of people listen to our GeriPal podcast happened in the beginning of the podcast. So imagine each one of you, you’re on an elevator with our GeriPal listener.

You don’t know anything about them. You don’t know who they voted for. You don’t know if they’re left leaning, right leaning anywhere. But you got two minutes or less. It’s on the first floor of the elevator. It’s going up to the 12th. They just press that button. What’s your elevator speech here about why they should care about what’s happening at the NIH with these new rules, Sean?

Sean 03:41

Well, first of all, Eric, I work at Mount Sinai, so getting to the 12th floor on the elevator takes about five minutes. So I want five minutes, not three. If there are two, if that is okay with you and you remember that.

Eric 03:55

I remember I was at Sinai, So I’ll give you three and a half. I’ll give you three.

Sean 03:58

There you go.

Eric 03:59

It’s a Saturday, so it’s a little. It’s a Saturday.

Sean 04:01

So what’s going on and why do we want to talk about it? I think what precipitated this podcast is the Office of Management and Budget proposing changes into how grants are both reviewed and funded at NIH. And what happens in terms of federal policy is the Office of Management and Budget is responsible for setting the rules by which all agencies act. And they’ve set a new rule or proposed a new rule that has a number of serious implications for our field. Every day, I take care of older adults and people with serious illness, and I know that I need better data, I need more evidence to care for them.

The work that I do in my clinical practice is limited by what I don’t know. And the answer to those limitations is better research. And if we look at the major advances that have happened in geriatrics and palliative care that has come through NIH funding. And if we are going to have our patients live longer, suffer less, and have a better quality of life, we have to have funding that supports our work. So what’s happened? Well, the Office of Management and Budget, the federal government, the executive branch, has proposed a number of changes in how Grants are funded. First of all, grants need to meet match the policy of the executive government.

The second is that traditionally it’s been the best science that’s been put forward for funding and that comes through review panels. Now that science is approved by a political appointee or it is proposed that it would be approved by a political appointee, there are significant restrictions on the type of research that can be funded. Research focused on marginalized populations, disparities, research addressing inequities in healthcare, all do not fall under what will be covered and appropriate research. There will be prohibitions against international collaboration, which is critical for the work we do, for example, in dementia, collecting biobanks, developing new ways of caring for seriously ill people when you need large populations.

And I think perhaps most scary to me is there will be prohibitions on going to conferences, talking about the data that you publish and indeed what journals you can publish in. And from my perspective, there’s three key issues that come about this. One is that, yes, we’re going to lose a lot of evidence now from the grants that are going to be canceled, but we’re going to lose the best and the brightest of our workforce who are coming in, who want to make a career in geriatrics and palliative care and enhance the science. There’s not going to be a stable career for them moving forward. The second is if we’re going to be judging science. I know I’m running out of time.

Eric 07:13

I was just going to say we’re on the 10th floor, 12th floor is coming up. All lights are on.

Sean 07:19

If we are going to judge science through a political lens, we are going to miss studying things that are important to our patients and our families. Geriatric and palliative care at one time were fringe areas of research, fringe areas of healthcare. Because of NIH, they move mainstream and there’s the risk that they will not align with priorities. And then finally, reasonable people can disagree about federal budgets, reasonable people can disagree about research priorities.

However, we should all believe that science is going to drive our field forward and that driving our field forward depends on the best science we can do. And that’s at risk right now. It’s completely okay for our politicians to set broad research agendas. It’s completely okay to set initiatives, and that will change by who’s in power. What’s not okay is deliberately saying, you can do study this problem. You can’t study this problem. And by the way, we don’t like those data, so we’re going to ignore them. That’s harmful to Our patients and our family in the field. And I’m on the 15th floor. I know. I’ll shut up.

Eric 08:33

Thank you, Sean. And just for our listeners, if Sean already convinced you at the end of this podcast, in our show notes, if you would like to do something about it, we’ll give you some options of what you can do. Stacy, this listener now is going down from 15 to 1 because they forgot their keys. Now you got 15 floors going down. What’s your elevator speech?

Stacy 09:02

So I’m going to pick up where Fawn left off and talk a little bit about another issue that is at risk, which is that they can cancel grants at any time. Now, I do research with seriously illness patients and their families, and I ask them, you know, why are you. Why are you participating in this research study? What does this mean to you? And they’ll tell me, it’s really important for me to help other people who might be in my situation, who might be suffering the same kind of distress I’m suffering from.

And by being part of a research study, they’re giving back and part of a legacy, part of data that’s being given. If a clinical trial is stopped midway because it no longer aligns with the institution’s priorities, that gift of their information, of their time that may be precious and limited is gone. It is wasted. It is, I think, really unethical and immoral to do that to people who have signed a consent as part of a clinical trial, expecting that their sacrifices and their gifts will not go to change practice or to help us understand something meaningful. And that, to me, is something that is also a very key issue to our patients and families.

Alex 10:16

Great.

Eric 10:16

And we’ll take a deep dive into each one of these after we do our why, why we should care. Two minute elevator speech. Ken, I’m gonna end with you, kind of new person. You’re going up to the 10th floor with them.

Ken 10:30

I only get the 10th floor.

Eric 10:32

You only get 10th floor. It’s gotta be shorter. What is it?

Ken 10:36

All right, well, I think this is the way I think of it. You know, the research enterprise, medical research, is a public trust. It exists to help our patients live better, free them of the burdens of disease. And so medical research exists for the needs of the public, for the needs of patients and their families. So now what this is saying is that after a medical research project has been vetted based on its impact on patients and families, a politician should decide if the medical research suits the interests of the current politicians in power.

So this is like fundamentally getting at the Question of does research exist to help the needs and concerns of the public, or does research exist to help the needs of whichever politician is improving at the moment? So you know, to have politicians basically deciding that like we’re not going to fund research because even though it might improve the health of the public, it doesn’t suit the needs of their current political agenda, that’s wrong. Whether you’re a Republican, whether you’re a Democrat, whether you’re a conservative or progressive. I can’t imagine how anyone of any bent would want, whether it’s people they agree with or people they disagree with basically making those decisions and removing, you know, the public trust for medical research. So it’s a really, truly appalling move.

Eric 12:13

Yeah. And again, shortsighted. Whoever’s in power, it sounds like too.

Alex 12:17

Yeah. To quote Bob Dylan as the present now will later be past. Right.

Eric 12:25

Okay, now let’s do a little round robin. Let’s try another way to do this is that maybe we can go around each one of you. Alex, can I throw you in the round robin? Sure, sure. Because I know nothing about this. So teach me one thing, that one thing, one aspect of this that you’re most concerned about, why you’re concerned about it. Then I’d love to, after you say what you’re concerned about, like to hear others opinions on it too. And we’ll try to do this kind of as we go around, you break it apart. So like again, one thing. So let’s try that this time. I’m gonna put in my randomizer. It ends, starts with Stacy. Stacy, you did a nice job of saying you can say the same one thing, you can do a different one thing. And let’s talk about it.

Stacy 13:16

I think if I had to pick one thing, it’s that peer review just is no longer binding. I think that is the most important thing, that political point.

Eric 13:23

What does that mean, no longer binding?

Stacy 13:25

That we, you know, thinking about the research process. So as a researcher, you write a grant, you submit the grant, and then you have your peers read that grant and critique it, identify the strengths of that project, the weaknesses of that project. And then if that group of peer reviewers decide that this is going to make an impact on the lives of our patients and families, that this is going to make a significant contribution to science, that project gets a good impactful score. And then the scientific officers at the NIH gather and in a consensus decide which grants to fund.

When a political appointee can then come in and say yes or no based on maybe their own personal experience. Maybe the administration’s priority, maybe because of some other kind of lobby or influence that is driving their decision, that upends that whole process. And I think the ripple effects from that cannot be overstated. I think it impacts patients and family first and foremost, full stop. They’re going to feel the pain now. And 10 years, 15, 20 years down the road, we’re going to be a lot further behind than we were before in terms of research results and information. That’s driving practice.

Eric 14:57

Well, let me ask you, Sean, was this an issue before? I’m guessing with cancer, moonshots and focus on Alzheimer’s disease, didn’t the administration have some influence on what we funded?

Sean 15:11

Absolutely, Eric. I mean, every administration sets broad priorities as to what is in the public interest. Alzheimer’s disease. And clearly, clearly in the public interest, both in terms of effective treatments, which we don’t have, pharmacological treatments, caregiver support, cancer, clearly in the public good. And I don’t think any of us argue with setting broad priorities. What the problem is is that when the individual research is then subject to a political decision.

And let me give you an example about what might have happened. We all agree that infectious disease is a high priority issue for us. And back in the 1980s, there was a disease that was rampaging through primarily gay men and substance use orders, and that was called aids. And the political groups, this was a group of people that were marginalized, were not seen as part of the mainstream, and yet were dying.

And because NIH had the independence to say, we’re going to fund hard science, focused on this unpopular group of people, quote, unquote, at that time, for a disease which is not affecting the majority, we developed treatments that have turned HIV from a universally fatal disease into a chronic illness, which is now what we’re taking care of in geriatrics. All it would have taken was a political appointee to say, this is not in line with our priorities right now. We should not be doing this research. The AIDS epidemic would not have ended. That’s the type of problem we’re thinking about right now.

Eric 17:14

Ken or Alex. Yeah, go ahead.

Alex 17:16

About this. That’s persuasive to you in terms of the NIH’s claims or the underlying values that might have prompted this rule change or nothing here.

Ken 17:30

It’s two separate. I would put this in two separate parts. It’s like, are there things that the NIH has proposed or suggested that could improve the research process and the quality of research? So some of the specifications of what they call gold standard Science making sure that research is done in the most rigorous way possible where it’s reproducible.

So if Dr. Morrison does a study on his patients in New York, the findings he’s going to find in New York will also help my patients in San Francisco and Stacy’s patients in Denver. How a politician deciding whether that study benefits the political interests of whoever their funders are and the administration are, I don’t see any connection of that at all to the gold standard science or priorities.

Eric 18:28

That’s not gold standard.

Ken 18:30

Yeah, that’s not gold standard science. So that, you know, and I think in answer to the like big question you posed, Eric, you know, it’s really, you know, medicine is losing some of its roots like that it exists for the sake of patients and patients are supposed to be square one. And like to extend your example, Stacy, of grand terminations, like, I don’t think this is far fetched under such a scenario of, you know, you have an ongoing study that’s going on and it’s looking at a particular drug and it could help patients by discovering that a drug we use is actually ineffective or possibly harmful. So a political operative looks at your progress report and gets concerned.

Well, the maker of this drug is a big funder of our political operation or funds our people or runs a major pac. So this study, while it might be in the interest of patients, is not in the interest of our current political needs. So we’re going to just cancel it because we don’t want to see this study. I mean just to kind of have like political considerations be the primary driver of what gets funded is just appalling.

Eric 19:53

Yeah. And again, going that it could affect both political parties, whoever is in power. Stacey, were you going to say something?

Stacy 20:02

Yeah, I was just going to also add on, I today served in an intramural grant review process and it was focused on ovarian cancer. And it went from kind of my area, cancer prevention and control, all the way down to the molecular level. Science has changed so drastically, medical care has changed so drastically in the 20 years of my practice that I was completely out of my depth in hearing about organoids and nanobodies and things like that in the grant review process.

And I consider myself a scientist. Imagine if a political appointee, not even saying that they have a nefarious agenda, but just doesn’t know the significance of what they’re looking at, could make a very capricious decision that could impact hair dramatically. I think the Gila monster venom is a great story of that. Why are they doing research on Gila monsters. Yet someone who maybe was more in that field knows that their venom contains a compound that is going to be a GLP1. And I think we think about the complexity of science. We’ve become more specialized and that’s because our science has become more complicated and you need people.

When I say peer review, it was actually Dr. Morrison told me when you get asked to be the palliative care person on this grant review, you should say yes. So that our peers are reviewed by our, by scientists who understand palliative care, who understand the suffering of patients and their families, who understand the needs of our field.

Alex 21:43

And I appreciate also that there is a to be sure here and I appreciate that Ken went there a little bit. There are issues with NIH. I know. Have any of you read the book Abundance by Ezra Klein and Derek Thompson? And they have a couple chapters that sort of address science and NIH and they talk about how, you know, it used to be that some higher proportion of investigators were funded before age 35 and now it’s like 2%. It’s like really low. Right. And that, you know, the technology behind the MRNA vaccine just kept getting denied at NIH because it wasn’t enough like data.

It was too like out there and avant garde and we’re not supporting research that like pushes on innovation. They also tell this great story of like if somebody had said to, like somebody wrote this up, it’s from an article. But like somebody had said, like the king of Spain had said to Columbus, like you don’t have any preliminary data supporting that you’ll like be able to make it to the Americas. Why don’t you just, you know, sail from Spain to Portugal? Like the study section thinks that’s highly likely to succeed because we have great preliminary data about it, you know, so there are, I think there is a, to be sure here that there are problems at the NIH.

The administrative burden on researchers is large and we need to have greater connection between the taxpayer dollars and the innovation and advances. This is not the solution. This is draconian ham handed power grab and we should be deeply concerned about it because as has been done in other cases, there are sources of truth and kernels of like, you know, there is discontent about some of these issues and some, some ways in which some policies have been implemented were deeply unpopular. Think back to Covid. But that is not a reason to institute these sorts of changes.

Sean 23:38

I would also add to that, Alex, that and I’ve been criticized by, as one of my mentees said, you like to color outside the lines rather than inside the lines. And I would completely get. There’s a lot that needs to be fixed at NIH, and yet there’s a process for doing it. And that process has been working. We have the National Institute on Aging because people went through the right processes to make the case that aging deserved an institute of its own. We have palliative care funding because people made the case through science, through clinical examples, that palliative care needed to be a priority and needed to be funded. There have been changes in how grants have been reviewed. It’s not perfect. We got a long way to go. But as you said, blowing up the system like this is not the answer.

Eric 24:28

What about. I’ve heard some of the other changes, like, I think limiting the number of grants you can be PI for. I mean, just going to Alex’s question of can we incur. Get more people? Is that a reasonable thing? The om, Office of Medical Management. Office of Management and OMB is proposing,

Stacy 24:47

you know, I think at the same time they’ve also suggested it, cutting down the training grants.

Eric 24:52

Yeah.

Stacy 24:53

And so if you’re going to halve the number of training grants. Grants, and then limit the number of grants that a PI can hold at the, you know, more later career level.

Eric 25:04

Yeah.

Stacy 25:04

What you’re really doing is just getting rid of scientists.

Eric 25:08

Yeah. You’re thinning out all scientists.

Sean 25:11

You’re thinning out. And, you know, I, you know, Ken and I are two of the, you know, culprits on this one, because, you know, we hold multiple grants, and yet the grants that we have in name only or that we have support 20 early career scientists on them. So it’s not as if they’re supporting us per se. They’re building and creating a field. And so I think there is some. There’s truth on both sides there, Eric. There’s truth on both sides.

Stacy 25:43

Yeah.

Ken 25:43

Well, and I actually will throw them a bone here because I think there is something to the concept of, like, there is a concentration of wealth, let’s say, and NIH funding. And I do think it’s possible for. There are. It’s possible for senior investigators to reach a point where they get more and more funding and they’re reaching a point of diminishing returns where it might be better to give a project to somebody younger than them who can, like, devote full time to it. Now, I would sort of say some of the proposals I’ve seen, for the reasons Sean said, they’re too simplistic, because the simple counts are actually not Very effective ways of dealing with this. You can have grants that actually, yeah, you’re the PI of, but you really.

The resources are actually not going to you, the resources are to other people. And you can have grants where actually you do climb all the resources. So I think the concept of spreading the wealth and being aware of possibilities where one person can have so much going on that they’re becoming less effective, it’s a fair concern. And I think there are ways to address it. Probably not quite the way that it’s being addressed in this proposal. But yes, I will throw that, yes, there is some sense behind those ideas.

Eric 27:06

Well, let me ask you this, Ken. Of the proposed revisions that we haven’t talked about, the peer review part, the limits on grants, what concerns you the most about the proposed revisions by the omb?

Ken 27:21

You know, I think it’s what I’ve already. I think it’s what we’ve already discussed. I think changing the grant process, where the fundamental metric is not what’s going to have the most impact on the public, but what’s of the most benefit for political interests, is deeply concerning. So I think, as I think you’ve all of you said, our elected leaders certainly should be able to set priorities about what’s important and the big areas that are important.

But like, I think, you know, like, yes, I thought, Stacy, I, I forgot that GOP1s come from helium monsters. And when I watch like National Geographic, I will never look at, think about that horrible, mean healing monster the same way again. You know, it’s so like, yes, that’s an, it’s an example of like, you know, somebody who doesn’t know what they’re doing or doesn’t understand science is like, why are we studying these weird, like monsters? You know, you could easily have seen this research not happening.

Eric 28:24

Alex, what concerns you most about the proposer visions?

Alex 28:29

Uh, so I, I think, I think the point of this is to come up with another thing that’s already been mentioned.

Eric 28:36

Yeah.

Alex 28:36

Because I’m deeply concerned most about the removal of peer review and the political appointees making decisions. But another thing we haven’t talked about as much are this, like, sort of ban on DEI and gender research. And this is, this is a huge issue and I guess the to be sure is here. So I’ve been a, a proponent of affirmative action my whole life, and I was very happy with the DEI policies and I recognize that there were a lot of people who weren’t happy with the way that DEI initiatives were instituted at institutions as policy at NIH. And elsewhere. And this is not the solution. The complete ban is a terrible idea. Yes, sure, some things could have been done differently and probably should be done differently, but complete ban on research just erases and silences whole areas and whole populations.

Like failure to recognize that structural racism is an incredibly important driver of current, past and future health inequality is just terrible science. Right. We need to be able to do that. Like not recognizing that people may identify other than as a man or a woman or they may identify as transgender. Please see our prior podcasts about this. That’s erases a whole group of people from scientific research. And that erasure should be deeply concerning to everybody. Everybody. Right. And you know, this is like comes back to the fundamental issues that started the ethics movement. Right? Like caring about people who are disenfranchised, marginalized, erased. Right. We should care about this.

Ken 30:22

Yeah, I agree with you, Alex. And I think one of the things that’s happened is kind of DEI has been thrown out as a buzzword. And, you know, I think as somebody who also has supported affirmative action, I also think that reasonable people could differ about the solutions to the impacts of discrimination and whether granting a preference to somebody who comes from a group that’s underrepresented is the proper solution. I think people can debate that, and the elected officials do have a role in setting policy on that. The problem is that that narrow issue has been blown up to be an attack on anything people don’t like.

Or acknowledging facts of public health that are abundantly evidence based because they’re just inconvenient truth. The example, like the fact of structural racism and that structures that have been in place in the past can impact what’s going on today. Like, you know, that’s. So how could that not be true? And you know, so the attack on DEI has often been used as an excuse for that fact. You know, the fact that social determinants of health and social determinants affect health is fact based in medical research for about 200 years. And to sort of pretend that those facts don’t exist because they’re found inconvenient, that’s anti science. There’s nothing scientific about denial of those facts. And that has nothing to do with dei. That’s basically acknowledging scientific truth.

Eric 32:11

Well, I want to be mindful we have some time for what to do. But before we do what to do, maybe we can do a couple more of things that you’re concerned about that we haven’t yet really addressed or really addressed fully. Sean, anything else coming to your mind?

Sean 32:24

Yeah, the ban or the effective ban on international collaboration and the inability to fund partners in other countries. So much of the advances that we’ve seen in palliative care, for example, have come from work from Europe who are doing this type of work and focusing on it long before we were. And if we didn’t have the opportunity to be able to collaborate with those colleagues, take their models and see if they worked in the United States, for example, our field would be so far behind and we wouldn’t have the needed resources and the needed treatments to take care of our sickest patients. We have international biobanks on Alzheimer’s disease that provide far more information to us than we could ever get just collecting in the United States.

And if we’re going to have an effective treatment for ad, we need those biobanks and we need be able to partner with our colleagues throughout the world. And again, I just see how this is Pennywise and pound foolish. Yes, we can argue that US Tax dollars should be supporting US science. I get that. On the other hand, we also need to recognize that collaborating with international scientists brings us data and brings us results that will directly affect our patients and we just can’t get rid of that. Yes, we have to be careful about who our partners are.

Ken 33:55

You know, and to give, to give a stark, like current example, Sean, you know, if we don’t want Ebola to come to the shores of our country, it is sure as hell a good idea to collaborate with scientists in the regions where this virus currently exists. If, like say, for example, some virus emerges on a cruise ship like near South America, we probably want to collaborate with the scientists in South America to make sure it doesn’t come to North America.

Eric 34:27

So Stacy, any other concerns that you have that we haven’t yet fully talked about?

Stacy 34:33

I think the one thing we haven’t mentioned is around the journal publication fees. And I think this is, it’s worth saying because through journals, this is the way we communicate with our field. This is the way that we as researchers, scientists can share these results with our community of clinicians. Not everyone can go to a in person meeting. I think this is probably how you and Alex find out about who should we, what, what topics are on our mind, what, you know, like, let’s read the journals. And recently the NIH has stipulated that these journal articles need to be open access to the public without Paik, not behind a paywall immediately.

And we can argue there’s good reason to say that this should be that these kind of results that the taxpayers have put in should be available to everyone. In this most recent OMB proposal, they’ve also said, well, your grant can’t pay for it. So the journals are saying, if you want us to make it open access immediately, you have to pay. And the NIH is saying, well, you can’t use a grant to pay for it. So that leaves a real problem. And it’s a conundrum for, I think established scientists. It’s a gag for really.

Eric 35:52

It does feel like a conundrum because it’s like everything that we’ve talked about, like Alex was talking about in the beginning, is that, yeah, like some of this, like to publish an article in Nature. I just looked it up. $12,800 full gold access, get it published right away. $13,000 to publish an article in Nature. You have a lot. Most open. I think average is $4,000 per publication. Like, it’s not small sums. There needs to be tweaks and changes and thinking about it. But like this all out ban instead of other potential ideas. Feels like you are taking something, doing something. I’m forgetting what the analogy is. If anybody can help me.

Alex 36:34

Throwing the baby out with the bathwater.

Eric 36:36

Yeah, thank you for that.

Alex 36:37

Sean loves that phrase.

Eric 36:41

I don’t know, Sean. Ken, what do you think about that publication thing?

Ken 36:45

Let’s.

Sean 36:45

Let’s make it really straightforward. In order for me to come on GeriPal and talk about my research, I would need to get approval from a political appointee at NIH because I’m talking about research that NIH funded. I’m doing it during the business hours, which NIH is supporting. I can’t come on your show if this goes through without seeking permission.

Eric 37:09

So it’s almost like censorship. You wouldn’t be able to talk about the things that taxpayers are funding you to do.

Sean 37:15

Correct, Eric? Absolutely correct.

Stacy 37:17

It’s not really almost like censorship. It is de facto censorship.

Ken 37:22

Yeah, I’ll give a little bone back because I agree that there’s a lot of concerns about how this is being implemented. This maybe is for another podcast. I will also say that the concept that the taxpayers will send a check for $12,000 to nature, I find, like an outrage. So that there is, there is a legitimate issue that needs to be dealt with here because research does cost money to publish. And, you know, the journals are not voluntary enterprises. And there’s some very concerning stuff going on about publishing houses ripping off the public and the scientific community. So there are complex issues to be dealt with here, but they need to be dealt with seriously and not just with random Sledgehammers.

Alex 38:14

And I feel most for the junior researchers who are most caught up in this because they’re the least likely to have alternative resources to pay publishing fees in order to get their articles published immediately and comply with NIH policy. So I feel like they’re getting caught in this battle between the federal government and the publishers. And that’s just terrible.

Sean 38:36

Yeah.

Eric 38:37

Maybe one more topic. Any other topic that we haven’t talked about that we should talk about before, if we’ve convinced our readers to do something, what we should do. So any other topic you want to bring up before we go into the next phase?

Sean 38:49

We haven’t talked about it, but under the prohibition of research, anything that’s deemed to promote anti American values is not going to be funded. And I’m not sure what anti American values are, but it seems like it’s a pretty big umbrella. It’s a pretty big umbrella. And that worries me a lot because it means that whatever party is in power in the White House can determine what’s American and what’s not.

Alex 39:23

Ken mentioned this earlier. Gold standard science. What is gold standard science? It’s like some test. It has to be gold standard science. I don’t know. Like what’s. What is gold standard science? And who gets to decide?

Eric 39:37

Do they define it at all? I mean, no, there’s no definition of gold standard science.

Alex 39:41

There’s no definition of what gold standards. And the second one is like this. There’s a. It’s not in these current. This is already stated policy that you can’t have the word policy, speaking of policy in your grants. Like you can’t address policy. What. Like that is the major lever behind which health services research have to make change.

Ken 40:04

Right.

Alex 40:05

Is by studying policy. Studying health policy.

Eric 40:08

And we know what works then and what doesn’t.

Alex 40:11

Right. Right. So how. Yeah, Ken.

Ken 40:14

Alex, can I give you one ounce of pushback?

Alex 40:17

Yeah, yeah, please.

Ken 40:19

Again, in all of these things, there’s often a current.

Alex 40:22

Yes.

Eric 40:22

A curve.

Ken 40:23

There’s often a reasonable value in it. So I have some sympathy to the point of view that I as a researcher should not be using my research dollars to actually lobby for a policy. That my job is to collect the data that the policymakers can use to inform policy so that I think. I think there’s some value there. And I’m open to arguments that there might be times where researchers have stepped over that line. Now, the problem is, as you’re stating is that the concept that research is not supposed to inform policy is preposterous.

Of course, because policy should be based on data. And I don’t think people have even defined policy. So, for example, the concept that we’re going to give a drug to somebody for hypertension and that health insurers should pay for the treatment of hypertension, that is in fact, a policy that is informed by data that says when people have uncontrolled blood pressure, they have bad outcomes and they have shortened life expectancies and that when we treat that, we markedly improve their prospects and life expectancy. So the concept that if a congressman asks me or wants to know is treating blood pressure good, I should be able to say, yes, it is.

Eric 42:02

So let me ask you this. So final comment. So if our listeners want to do something about this, because I see Alex getting ready for Bob Dylan going to do something about this, maybe it’s all of the aspects, maybe it’s a particular part of this proposed revision from the OMB that they want to suggest something. Otherwise, what should they do? Stacy, I’ll start off with you.

Stacy 42:26

So we are in an open comment period, and so we have until mid July. So thinking about the things that we’ve talked about today and thinking about how it impacts you, your practice, and most importantly, again, your patients and their caregivers, thinking about how that may impact There is a link that I think you

Eric 42:47

all we will have in our Show Notes. Just go to the show notes for this website if you want to comment

Stacy 42:53

and take the time to comment. They will have to answer to every comment submitted and those comments are in the thousands, if not tens of thousands. Right now. We need to show not only the omb, but we need to show all of our Congress that we care about this and we care about protecting the lives of our patients.

Eric 43:16

And Sean, if I have a listener who wants to comment, is it just should we just use a form letter or is it better to personalize it and to say what specific aspects do you disagree with?

Sean 43:27

It’s really important to personalize it. Talk about the patients you care for, talk about how science has helped you care for them and make it personal. Tell them why it affects you and how it’s going to affect your patients.

Eric 43:43

Great. Ken, anything else that you would encourage our listeners to do if they want to do something?

Ken 43:48

I think our listeners should make it clear that they want scientific and medical research to improve their health and of the ones they love and that they don’t want the focus of research on addressing the political needs of politicians. And in that letter, they should describe any health issue that they or their family is dealing with and why they want research focused on that and not on political interests.

Sean 44:24

Eric, can I add one more thing? Do I have time? And this is why it’s so important for the GeriPal audience. When a scientist like me says this grant should be funded, that’s self interest, or it’s hurt as self interest when a clinician says my patients need better treatment from better science. That comes from a patient advocate. And so it’s really important, really important for that clinician voice to be heard.

We’ve talked a lot about the fact that this is in a proposed rule. What we haven’t talked about is a lot of these changes already happening subtly at NIH. And so in addition to commenting on the federal rule, commenting to your local representative and your two senators is also really important because it’s happening and we need to stop it.

Eric 45:16

And I want to just acknowledge too, as we’re focused on the NIH, but this applies to all grants from the federal government. So our focus has been rather narrow here, but important for our Jerry Pell audience. We’ll have links to it in our show notes, a couple other useful links if you want to learn more about it. And with that, Alex, you want to finish us off with a little bit Bob Dylan.

Alex 45:40

Come senators, congressmen, please heed the call don’t stand in the doorway don’t block up the hall for he that gets hurt will be he who is stalled There’s a battle outside and it’s raging It’ll soon shake your windows and rattle your walls for the times they are a changing.

Eric 46:08

Stacy, Sean, Ken, thank you for joining us on this podcast.

Sean 46:12

Thank you guys.

Stacy 46:13

Thank you so much.

Eric 46:15

And thank you to our listeners for your continued support.

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