Longevity Journeys - Creating an Aggregated View

#1

It’s easy to find anecdotal data on what individuals are doing to extend healthy lifespan. And people on this site have been generous with sharing their own regimens. But I want to build an aggregated view of what people are doing and what they perceive to be helping (apps, tools, therapies, supplements, small molecules, etc.). If I were to build a survey to do this and make the aggregated data public, what would be of value to you? Would you participate in a survey like that? I like what Matt Kaeberlein did with the rapamycin survey and personally would love to see the same for a broader data set of interventions.

So much conflicting information out there. Studies have their flaws and experts have their biases. We need to experiment to see what works for each of us personally but it would be great to start with aggregated learning from others.

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Creating a database from people here
#2

Have you ever worked on any longitudinal studies or projects tracking health outcomes of interventions?

I get comments from people in the academic field frequently saying “wouldn’t it be great if you could get some longitudinal and efficacy data from all these biohackers trying rapamycin, etc…”, and yes, of course it would, but its not so easy.

Matt K. (University of Washington) got something like $50K from Impetus Grants to do that one-off survey and paper with 350 or so participants.

Really what you want is a way to gather the information in a way that is really easy, integrated into people’s lives (so you get the information on when they change dosing, record side effects, drop or add supplements or drugs, etc.) so its tracked over time on a regular basis with a high level of accuracy over a period of years, and you want thousands of people… so you can truly try to learn something and derive the “signal from the noise”.

I posted about this here: Greetings from age1 Longevity Venture Capital - Ask Me Anything! - #21 by RapAdmin

To do it right, takes a lot of money and a lot of time…

Not trying to dissuade you, but just trying to make sure you understand the true scope of the issue and the difficulties involved…

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#3

I really appreciate your response.

I am not a data scientist or researcher but I was a former SVP at P&G and had exposure to a lot of market research techniques. You’re right on the ideal solution: something longtitudinal, able to derive signal, and powered by a large sample size. Very hard to do and requires people to trust you with sensitive data.

My goal is different, at least to start. The people in this forum are ahead of the curve on the lifespan journey. So many people aren’t even aware that the rate of aging is malleable. And once they do learn, finding credible information on interventions to try requires a lot of research. That’s been my personal experience at least.

As you obviously know, aging biology is incredibly complex, and no two people are exactly alike. On top of that, many studies have flaws: lack of controls, small sample sizes, and correlation versus causation are just a few. The experts themselves are also subject to biases and monetary conflicts of interest.

I would have found it useful to see the aggregated habits and practices of others at the start of my learning journey. How many questions do you get here on “what’s your stack?” Helping people realize that no one expert has all the answers, especially for you as an individual, is also useful.

So, I believe that’s a place to start that has utility. Over time, if you can build the audience, trust and participation, you might be able to graduate to longer term participation and increased data collection that includes more sensitive data on health metrics related to interventions.

Thoughts?

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#4

I’d suggest looking at genetically diverse individuals who take on the same behavior pattern and live a longer time than others who don’t. The only real remaining Blue Zone is Loma Linda.

When I work in Anti-Aging Medicine, the first things are not much of the stuff that we focus on, on this board - as this board offers some hope beyond the mainstream high evidence based practices (which incidentally aren’t done well at all by most “practitioners” who work in primary care).

I go down the list of what is going to disable or kill people - especially the former, and make sure every high level evidence intervention is pursued if there are items not optimized.
So vascular disease is #1 and #3 on the list with CAD and Stroke - so optimize those risks. Then Malignancy risks, then Cognitive decline, sarcopenia/frailty/osteoporosis, hormone normalization.

It is only after those things are optimized that one should really start into additional items. However, I’d say, as part of the journey to optimize all the items above, almost every item discussed on this board comes into play as treatment options for optimization, and as such, choosing options that both optimize longevity, simultaneous with optimizing their medical conditions is a goal.

I have a structure I use that simple goes down the list of these things and then have strategies to optimize each.

If someone already has a truly optimal diet, metabolism, BP, insulin sensitivity/glycemic control, blood pressure control, lack of visceral fat, good muscle mass, ideal APO B based on different goals if Lp(a) is negative or elevated, exercise/sleep/stress etc …. I think then, for the person trying to slow aging, a lot of stuff discussed here comes on the table.

We are unlikely to have definitive answers to most of our questions before I’m deceased - and there is likely a benefit to length of therapy and starting treatment before having disease … so it becomes a risk benefit analysis based on what we know as to what to do.

Wish we had more definitive answers, and we will some time - but the stuff I thought we’d have solved by now, having graduated medical school 30 years ago - virtually nothing I thought was going to be solved has been. Instead we see declines in health and lifespan/healthspan. Albeit, much of this relates to increasingly poor life choices.

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#5

I think the Loma Linda studies are confounded by the fact that 7th Day Adventists practice a healthy lifestyle, not just the food they eat.
From the https://pulitzercenter.org/ article:

“Every day, Loma Linda resident and Seventh-day Adventist Ester van den Hoven, 96, walks twice for 20 minutes, a walking regime she has stuck to for years.”

“Anything that we put in our body, like a stimulant, alcohol, or smoking, any of that sort, becomes so damaging”

“Spirituality is a common thread that Adventists share and an intrinsic part to their everyday lives”

So their diet is only a part of what they do that affects longevity.

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#6

Your post is excellent and should be kept in mind by everyone here as we prioritize our interventions for optimum benefit. I do think that the science is just starting to jump by leaps and bounds as tremendous amounts of money are being invested in longevity. And the tech is rapidly advancing, too. So I think we will have a lot of very good answers before you are deceased. Definitive? By whose standards?

Here, I think you have to make a distinction between the average American and those of us (like on this forum) who are really looking for answers to stay healthy (and are smart enough to know where to look). Our options are expanding.
How quickly the medical establishment steps up to the plate and invests the money as well as getting these longevity therapies into practice, is yet to be seen. But I think the project suggested by the original poster @DPB is something we all want. We’re learning an awful lot (here and other places) in the longevity community at large. How do we organize that information in a practical way to make it more accessible and actionable? Very important if you’re looking for something actionable is to look for results from the group most similar to you, in age, gender, lifestyle, fitness, BMI and even bloodtest measures or BioAge. Then if it worked for them, the chances are better that it will work for you. To get information from mouse studies, when mice are trapped in cages, can eat as much as they want and don’t get heart disease, I think is of limited value. That’s why when people say it didn’t work in the ITP so I’m taking it off my list (@RapAdmin ,I’m looking at you! (jk)) I think that’s kinda silly.

#7

It’s not a confounder, it is part of the effect - and it is a package deal that it is diet, exercise, stress reduction, community, etc. We don’t know what cumulative effect each of those have, but we have a pretty good idea.
I grew up in Loma Linda, not a member of the church, but my Dad was the PI of the Adventist Health Study from 1977 until last year. Still heavily involved with it - and hasn’t dropped a beat mentally, now at 77 years old.
I’d suggest that the Blue Zones have a common underlying theme, with a package deal on lifestyle. With Loma Linda, the difference is a genetically diverse crowd that still get the effect.

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#8

@ng0rge I hope you are right. When I was in medical school in the early 1990s, they were pretty sure they’d have cystic fibrosis solved with a viral vector inserting the replacement for the defective gene. We are now 30 years forward, and it still isn’t done.

Things move painfully slowly. At least on drugs that have pharma behind them (not rapamycin) there is a lot of data being collected, along with analysis, that gives us indicative information. This is useful when using these agents for conditions they were not initially approved for, where they are shown to benefit.

I do agree that each year, we’ll get more information, and more certainty. I really wish physicians had this area as a major area to track, and modify their approach as new data comes forward.

There currently is a lot of missed opportunity.

I suspect most people on the board are doing what they think is optimization of their health - the issue is whether everything is being optimized. This is a unique community for sure. I was more referring to the general community, those who on average now have 15-16 years preceding their death of being disabled to some degree by co-morbidities (which is the current average), and now are dying earlier than 5 years ago. This is almost exclusively due to lifestyle choices, as is 70% of our 4 trillion dollar health budget - chasing things that wouldn’t be a factor with people making all the right choices.

It’s a lot of money, and a lot of human suffering. It is also a challenging landscape with people yelling loudly about things that are unhealthy and claiming they are healthy - along with generally having a vested interest in selling you something.

As per the Impractical Jokers … “tis confusion.”

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#9

Two things - the science and tech are much different now and I would say, undeniably, the pace of change is faster. I religiously follow science news and am always amazed.

This is much more true in the medical establishment because they have to be so conservative. But if you look here, at the longevity community, we also have to be careful to do no harm but we can incorporate much more information, we’re not not limited to RCTs (although quite important), we can also look at, for example, Bryan Johnson. And with smartphones everywhere, we have the potential to collect a huge amount of individual case data (carefully). That could be huge for coming up with recommendations for unique phenotypes as opposed to the general public. Certainly we need time to follow people over longer periods.

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#10

Great points and thank you for the input @RapAdmin, @DrFraser, @desertshores, @ng0rge. I’ve followed longevity science for more than 20 years and agree that not much has changed in terms of how my doctor treats me. I also agree that the pace of discovery has picked up in the last 10 years. Long way to go as we all know but funding, science and awareness of aging as modifiable are gaining a foothold.

For segmentation, I was thinking more behavioral or psychographic. For example, clinicians, self-identified biohackers, health and wellness enthusiasts… Grow the database big enough and the genetic diversity will come. From a longevity intervention standpoint, beyond lifestyle, tracking supplements, small molecules, therapies, apps, diagnostic tools, etc, (and the list of these things will continue to grow).

Social proof and personal stories can go a long way to raising awareness and inspiring action in people at the start of their longevity learning. A database that allows folks to benchmark versus others, and learn about more tools could create that. Lots of limitations to this approach: even as aggregated data, it’s not clinically valid and what shows up as popular or has “perceived effectiveness” may not be right. But raising awarenes of interventions, making it easier to see what’s out there, and bringing the longevity conversation to more people I hope is helpful.

The hard part is getting people to fill out a survey. I can create marketing plans for that and find ways to fund that don’t create conflicts of interest in the data but one of the more important responders to have as a segment in that database would be people like you: doctors, longevity practitioners, biohackers. You see more, try more, risk more than anyone. You have a lot to teach that is valuable to people behind you in the journey.

So, I come back to, would you participate in a survey like this? Even if its not conclusive data, would you find this aggregated view useful?

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#11

@RapAdmin what’s the biggest response you’ve had to one of your surveys on here?

#12

Mouse studies, even the “3 in 1” mouse studies of the ITP are not perfect. Nothing is. But its my opinion that these ITP studies are so far ahead of any other type of mammal study (for longevity compounds) there really is no comparison…

And, while the genetically modified mice used in many disease models frequently are not very much like the disease they are designed to model (as the many failed drugs have shown, despite evident “success” in treating the mouse model of the disease), I think that as Richard Miller has stated, aging in a mouse looks a lot like aging in humans or dogs, or anything else. These are not genetically engineered mice meant to mimic a disease process. These are regular mice, growing old, just like humans and other mammals. So I “bet” the results will be reasonably similar for many of these ITP drugs, in humans.

So, while not perfect, the ITP studies are the best we have.

The “900 mouse, Three Simultaneous studies” design of the ITP studies is fundamentally of a different nature / and value than the typical 50 mouse study that labs regularly do for their lifespan studies.

Yes - I have two fundamentally different lists. The ITP drug lists - which are proven successful in three simultaneous large studies. When you combine these with the human data from the typical clinical trials, I think you have some reasonable bets.

And second class of molecules are those tested in small, low power, non-ITP studies. These might be interesting and something to watch longer term, but I’m not going to be as action-oriented on these molecules.

Richard Miller describes it well here: https://youtu.be/g8bXYKeeWnc?si=8RIyUQjkfVMdmGve&t=7308

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#13

It seems that around 250 responders is the maximum we’ve gotten so far, on this poll: Rapamycin User Poll / Survey - Please Respond

Matt K/U. Washington managed to get a total of 500 people to fill out their long survey (I think it took about 30 minutes to complete, but your experience may have differed)… Evaluation of Off-label Rapamycin use to Promote Healthspan in 333 Adults (New Paper)

Here are all the polls I’ve done here:

Surveys & Polls of Rapamycin Users

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#14

It is very hard to get people to fill out a long, detailed survey. Even harder if you want them to try to fill it out multiple times over a period of a year or two.

Matt K. / University of Washington had the added benefit that they worked closely with Dr. Alan Green (he has about 1,000+ patients using or who have used rapamycin) and other doctors and groups like AglessRX to drive participation numbers high. In a trial like you are suggesting, we’re not likely to have the same level of participation.

I actually had a conference call with Jonathan An at the University of Washington after the completion of the Matt Kaeberlein / University of Washington Rapamycin survey, because I was considering the idea of trying to keep that survey effort alive (via additional funding by Impetus Grants) so that it was an annual sort of survey to track longitudinal outcomes with rapamycin, but also with other interventions and drugs. Matt K. at that time had indicated that he would be leaving UW in the next year and wasn’t interested in doing the ongoing study / survey effort - so he directed me to Jonathan An.

Jon was intersted at some level, but the more I looked into it, the more I decided it was more work than I wanted to engage in.

In my day job I’ve managed product management for software projects, apps, etc. - and I’ve worked on similar projects, with Pharma as partners, where the Pharma companies want to use a smart-phone app to track long term outcomes of patients on drugs so that they can get a better idea of functional outcomes experienced by the end users so that ultimately they might be able to get some additional “Label Claims” for their drugs. Apparently the FDA is very interested in “real world data” (when done right) and values that more highly than just the safety and clinical trial data, to see if the drug is actually making a difference in people’s lives.

To get high retention rates and completion rates it takes a ton of usability testing of the software, and automation of data gathering whenever possible to minimize the “Ask” of the people participating. You can use a lot of data from cell phones and other wearables to see the functional outcomes of people over time, with much more precision than you’d ever get from a survey type effort. Instead of having people estimate that they are “more active” you can track activity at a highly granular level and identify that (for example) users on a given drug walked on average 16.7% more steps than people off the drug, or slept 23 minutes more per night on a typical week, etc.

But again, this is all a ton of software development work to “do it right”, and likely $500K to $1 Million in terms of development, testing, iteration, etc., which someone like The Hevolution Fund might potentially fund, if you want to spend the time doing it.

Anyway - I know this is much more than what you are talking about, but I suspect it might be what is required to get reasonably clean data that is useful (but perhaps my goals are too high).

Your goals are a little different - and I like the idea, and I’m happy to help or test the idea as you’re envisioning it. We can easily promote the link to the survey on the home page, etc…

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#15

Matt’s survey numbers are pretty good. Your informal polls are also good at 50-60 responses each. You can buy audiences from several agencies of course but that’s a more expensive route. Possibly there’s a hybrid here. Market the concept of longevity journeys, build an audience, build the database over time, augment with smaller polls over time as well.

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#16

Thanks and appreciate the offer to help! Yes, what you’re describing would be amazing. As you said, more than where I am thinking to start; although, I would love to turn it into that over time! I think lots of companies with deeper pockets are going to link (and already are) biometric data to health outcomes (Inside Tracker and several others). It’s just all in their own walled garden. For now, I’d be happy to drive awareness of the growing science and tools, and helping people a little way up the learning curve.

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#17

If you want to get the full list of survey questions that they did for the University of Washington study I’m sure we could get that (just to understand their thought process, etc.) - let me know if you think that would help and I’ll contact the appropriate people there.

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#18

That would be super helpful. I pulled the study online and could infer some of the questions from the tables but the actual questions would be better. I started to craft a survey design but am going to run it by some old friends my marketing and research days.

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