$54,000
$16,645

Advocacy for Rejuvenation Research is as Much a Process of Documentation as it is a Process of Persuasion

This is a lightly edited update of an older article that I think merits its own post. There are more people writing on the topic of rejuvenation research these days. The goal of treating aging as a medical condition has gained more supporters. Some of those people are forming new organizations, thinking out loud on the nature of advocacy, what works and what does not. So perhaps it is time to revisit this older opinion on advocacy as a process of structured conveyance of information, of creating documentation where documentation is presently lacking.

Let us start by paraphrasing an old joke: did you know that we all express the symptoms of a fatal, inherited degenerative condition? It is called aging. It is a dark joke, but there is truth to be found in it, as is often the case in black humor. Unfortunately, all too few people think of themselves as patients suffering aging, and fewer still would call themselves patient advocates, agitating for research to lead towards therapies and cures for aging. This is a sorry state of affairs; given that our time is limited and ticking away, the tasks upon the table should always include some consideration of aging. What can we do about it? How can we engineer a research community, funding and support to make real progress within our lifetimes? If you don't spend at least some of your time on this issue, then you are fiddling while Rome burns. Time is the most precious thing we have, and we live on the cusp of technologies that will allow us to gain more time - but those advances in medicine won't happen soon enough unless we work at it.

Working to create progress in longevity science doesn't have to mean working in a laboratory. Most of the modest efforts I have made to help matters along take the form of written advocacy at Fight Aging! and elsewhere: sharing events, passing on news, putting scientific publications in context, explaining where we stand in research and development, encouraging fundraising, and so on. In effect this is a sort of loose documentation, a way to demonstrate the existence of a community of people interested in rejuvenation research, and a way to provide direction and grounding to newcomers: how to become involved, how to benefit from becoming involved, and how to help advance the science of human longevity. A body of documentation is a necessary foundation for later phases of development in longevity science, but will also help broaden the community of people who are both aware of this work and understand what it might be used to achieve.

Not everyone agrees that this is useful, however. One of the challenging attitudes I've encountered over the years is the idea that documentation of longevity science in this manner is largely worthless - that time and funds spent trying to make science clear to developers and laypeople should go towards other, more direct activities like further research. This sort of criticism is, I think, symptomatic of a failure to understand the necessary role of advocacy and education in the broader scope of technological progress. This article, then, is an answer of sorts: what is the role of documentation, and why is it so important that we should strive to build organizations that do this well?

The Challenge of Complex Ideas

Most important topics relating to the future of advanced technological development are very complex: the basis for rejuvenation therapies, strong artificial intelligence, molecular manufacturing, and so forth. Even the general concepts (such as "why is this important?", "why is this plausible?", or "why should I support it?") are made up of many moving parts and conditional arguments that the broader public generally hasn't thought about yet. Thus we advocates can't just jump in and start persuading people that radical life extension is a great idea: instead, when it comes time to try to explain why this goal is important - and how best to proceed with research and development - we must first walk through a whole squadron of supporting concepts that are unfamiliar to the audience. Each must be explained, and only then can they be assembled into the final persuasive conclusion.

In the area of healthy life extension and biotechnologies to repair aging, an array of foundational ideas might include the following:

Each of these is no small thing in and of itself, and worthy of longer treatment. So presenting all of the concepts that lead up to thinking about rejuvenation biotechnologies is time-consuming, hard to do well, and requires a willing and interested audience. Unfortunately few people in the broader public are in fact willing put in the effort to follow you, me, or anyone else with a complicated idea all the way from square one to the end point. That takes time and attention, both of which are precious commodities, hard to obtain at the best of times. Thus the ideas that do gain traction in our culture are those that can be successfully communicated in a short period of time, because they build directly upon what is already known.

The Example of Hotmail

The recent past provides many good examples of ideas that could be quickly communicated to the public at large, and as a result rapidly gained interest and support. Hotmail is one such example: when the company was founded in 1996, it was the first service to offer email over the web. The founders were petrified that they would be beaten to the punch because the idea was absolutely obvious in hindsight: take email, take websites, and merge the two. Anyone in the internet-using world could easily grasp that concept, and the service took off like wildfire when it launched.

But let's stop to think about that for a moment. Both email and the way in which most people experience the web are in and of themselves very complicated concepts. Imagine that some visionary fellow gave you the task of explaining to the public an email service used via a web site in 1970: you would be right back to having to explain many foundational, unfamiliar concepts to an audience unwilling to give you sufficient time and attention. What is a network? How do ordinary people connect to or even use a network? What is a web browser? How does an ecosystem of websites and hosting services arise? Why would I need email, or some sort of patchwork visual information service? And so forth. Nonetheless, in 1996 Hotmail was an idea that could be conveyed and understood in a single sentence. "Email via a website." When we consider this and other similar examples, we see that there must be an ongoing process by which complex, unfamiliar, and challenging ideas become simple, familiar, and easily communicated ideas.

Layers of Knowledge, Attention, and Expertise

You might envisage the broad field of longevity science as a series of concentric circles. The innermost circle is made up of a small number of people who pay a great deal of attention to the field, and who possess the most knowledge and expertise: researchers who work on cutting edge science, for example. The outermost circle consists of a large number of people who pay just a little attention to the field, and who possess the least knowledge and expertise - such as casual advocates and interested members of the public. The progression of circles from innermost to outermost reflects an increasing number of people, but lesser expertise and attention. I'd loosely categorize the circles from inner to outer as follows:

  • Cutting edge researchers.
  • Other researchers, postgraduates, and scientists in related fields.
  • Dedicated patient advocates.
  • Medical technology developers, funding sources.
  • Physicians, clinicians and medical technicians.
  • Interested members of the public.

In this model of human endeavor, knowledge flows outward while funds and newly participating members of the community flow inward - or at least, that is the ideal. In practice, managing this flow of knowledge is a big and thorny problem: many of the most important movements in technology over the last few decades have focused on how to best move knowledge from inner circles to outer circles. Consider the open science movements, fights over closed journal business models, and the many efforts to try to adopt open source practices in the scientific community, to consider but a few examples.

Let me advance a definition for the purposes of this article: documentation is the name given to explanations and tutorials produced by the members of one circle that are intended for the next outermost circle. For example, review papers written by scientists present an overview of progress in one area of research rather than new data or results. These review papers are a form of documentation for the next outermost circle of researchers - scientists in other fields, or postgraduates, or other academics with less experience in the topic at hand.

To take another example, what I do at Fight Aging! is a form of documentation by this definition: ongoing efforts to explain the ins and outs of longevity science to people who are less familiar with the field, and who have less time to devote to understanding the work of researchers. Academic publicity services at the major universities also perform a similar task, producing explanations for the outer circles of doctors, interested members of the public, and the like.

Documentation thus moves raggedly and through many hands, as each circle learns from the inward circles and then in turn explains its knowledge, understanding, and work to the outer circles. That there are so many layers involved goes a long way towards explaining how science so often becomes garbled and misinterpreted on the way from researchers to the interested public. The process works over time, however, as the example of Hotmail well illustrates. The level of knowledge in the outer circles does increase, and the efforts of people involved in producing documentation make it easier for new ideas to gain traction.

Researchers, Like Most Communities, Document Poorly and Reluctantly

Anyone who spends time working in a technical field eventually forms a cynical attitude towards documentation: it is never what it might be, and the next innermost circle never does a good enough job of explaining themselves. This is simply the way of the world: most people in a given circle spend the majority of their time and effort in communicating with each other, not with the members of the next outermost circle. In the sciences, researchers write papers for one another as a part of the business of research, and this publishing of results is not intended to educate anyone other than peers at a similar level of expertise in the same field.

The process of producing documentation for outer circles is nonetheless very important, despite being undertaken by only a minority in any field. It is only through documentation that there can exist a roadway of information to connect researchers who produce new science with developers who build clinical applications of that science. If documentation is lacking, then so is the pace of development: developers work on what they know, what can be understood, and what can be sold to their investors. Ultimately, that knowledge must come from efforts made by researchers to explain their work.

Across the years I've spent following work on longevity-related research as an interested observer, I've seen a score of techniques demonstrated to significantly extend healthy life in mice, or reverse a narrowly specific manifestation of the damage of aging. Many of these results are languishing undeveloped, as the FDA still forbids clinical application of biotechnologies for the treatment of aging, for all that there are signs that this might eventually change. There is little writing on these research results, and no good sources other than the original papers - most of which are behind journal paywalls. Thankfully those paywalls are beginning to crumble too. Yet this change is painfully slow: what hope is there for the proper transmission of knowledge from the circle of researchers to the circle of clinical developers when the researchers have little direct incentive to explain their work, due to the FDA roadblock and consequent lack of investment, and when no other group seems to be picking up the slack? Potentially viable medical technologies are lying near fallow, buried in the output of the scientific community, and left unexplained for the rest of us.

The Solution: Produce Documentation to Take up the Slack

Addressing the challenges of documentation and transmission of knowledge is an area in where a volunteer organization can make a real difference to the future of longevity science - and for a comparatively small amount of effort and money. The flow of knowledge from the research community is vital, in order to raise the level of understanding over the longer term, but also in the shorter term to make developers aware of what exists to be developed into new and potentially promising therapies.

As described above there exists a clearly identifiable gap in this process, however: science that might lead to therapies for aging exists in many different forms, but there is little to no documentation of it. The inner circles are not explaining themselves sufficiently. Thus there is little in the way of a roadway to systematically bring this knowledge out to the circles of life science students, entrepreneurs, clinical developers, and other interested parties. Those groups, in turn, have nothing to work with when it comes to educating the medical community and public at large. So as a consequence little funding flows back into the field, and few people know what is taking place, or how promising scientific progress might be. This, in a nutshell, is the problem. The US may be closed by regulatory fiat to commercial development of therapies to directly treat aging, but much of the rest of the developed world remains open for business in this field - if the developers in those countries knew more about the work that has taken place and presently lies largely buried.

The irony of the situation is that documentation isn't expensive in the grand scheme of things, and certainly not in comparison to earnest clinical development. It doesn't require more than a few weeks of part-time work for a life scientist, a graphic artist, and an editor to produce a long document that explains exactly how to replicate a demonstrated research result in longevity science - a way to extend life in mice, for example. That document will explain the research in plain English, at length, and in a way clearly comprehensible to people who are not cutting edge scientists: exactly what is needed open the door to a far wider audience for that research. More rather than less of this should be the normal state of affairs, but at present it is not the case.

In conclusion, documentation is important, a critical part of advocacy and the development process at the larger scale. It isn't just words, but rather a vital structural flow of information from one part of the larger community to another, necessary to sustain progress in any complex field. We would all do well to remember this - and to see that building this documentation is an activity in which we can all pitch in to help.

Comments

I full agree that advocacy is as important as the science itself as this how the world we live in works. In an ideal case, scientists working on rejuvenation would be independent of philantropic funding and of convincing the public in order to raise funds. But that's not the way it is today. My frustration grows regarding all the obstacles that prevent faster progress due to wrong prioritization.

I wish I could agree upon your categorization of circles, but sadly I think it's more complicated. What cutting-edge researchers are, is very subjective. The research community is highly divided even on the definition of aging - sifting through pubmed, I see a hundred of different theories concerning aging. There's no pulling together of the research community for the matter of how to proceed when it comes to defeating aging. I know you're a supporter of SENS and so am I, but just saying that there's no agreement on the best approach in the research community. As an example, most researchers from Russia that have published on aging obviously are convinced that aging is programmed - a bias that appears highly unscientific to me (related to their education?). Scientist should always keep an open mind, a feature I also miss a bit in this blog (Just to be clear, I'M very grateful this site exists and I don't know if you are/were a scientist yourself). There are aspects of the enormously complex process of aging that SENS doesnt (yet) address - it needs to be said.

Posted by: K. at July 28th, 2017 3:55 AM

Wow nice article reason! I enjoyed reading this over morning coffee and agree with the points raised here. I like your inner and outer circle idea to demonstrate how information is moving around.

Posted by: Steve Hill at July 28th, 2017 4:47 AM

Wonderful article, and I cannot agree more on the main propositions. The flow of knowledge is somewhat broken in many places, but the biggest gap is indeed where knowledge should be going from the researchers to the other circles.

Interestingly, sometimes the party that does not receive enough information is also blaming the researchers for "undemocratic" behavior ("society is excluded from the decisionmaking on what kind of research should or should not be done", "the dialogue on ethical aspects of scientific advancement in a given area is limited or does not take place at all").

I guess people complaining about that do not take into account the amount of scientific information produced each month. We live in an extraordinary time when changes are happening literally every day, and not just dialogue but even a simple follow up can be difficult to maintain.

There is another angle to look at it, too. Normally, people who need the information are the same people who make an effort to mine it. In our case however people who are supposed to mine don't know that they would benefit from mining, so they don't bother.

AI can help us eventually :) by extracting useful bits and delivering them in an easily digestible and usable form to every stakeholder. But until it is there, the honor to get information from the researchers and produce popular retellings for different stakeholders remains on the shoulders of the advocacy groups.

Posted by: Elena Milova at July 28th, 2017 5:43 AM

Types of advocacy/documentation at the moment:
Scientists writing papers
Aubrey de Grey doing talks at meetings or media interviews
Fightaging doing a text blog
Leafscience doing a text blog
Rejuvenaction doing a text blog
Some Facebook groups sharing popular science articles and university media department articles

What else could or should be done? I thought about about marketing to my peer group through a personal fundraiser, but that turned out to be harder than I thought. The pro aging trance and the fact that like hotmail in a pre internet era you have to explain a lot of concepts means that it actually a bit of an uphill struggle.

Posted by: Jim at July 28th, 2017 11:43 AM

There is one path that I don't think has been explored, and if you have never worked in big pharma, it may not be very obvious, but I will bring it up now as a thinking tool for the group.

I realize that this is a "top down" idea, while much discussed here is "bottom up", but that is where the big piles of cash truly reside to get this stuff moving

I know some of you are thinking "but what about Theil?, or Bezos?, or the Google guys?,.etc…......NO…...they are devoting minuscule amounts of their current wealth to the topic....Big pharma spends / wastes over $200 billion annually…...that is where you will find your treasure to make things happen…but not via the traditional path

Most "special projects" that get started in big pharma, are NOT the result of some major consensus building / cross disciplinary project team (blah, blah blah..) but are the result of a "champion" at the higher levels of power in the organization

When I refer to "special projects" I'm referring to an area that is very new, not core to the organization, but which they are willing to throw a bucket of money at for 3-5 years to see if anything comes from it

Typically this power broker has done their time in the organization, is not afraid to suggest a crazy project or two, and will stick their neck out, as it won't impact their career if it flops. This person sits as a direct report to the CEO, and ideally has had some form of business development, and /or R&D, and/or M&A oversight in the past

You will need to do your homework to find this person, but they are in there

Representative examples of such non-core initiatives include, but are not limited to: GSK's recent "electroceuticals" program, Pfizer's "botanical drug" foray in the 1990's, even some of the "medical food" flops in early 2000s.

Find this person, and suggest a "drop in the bucket" ~$100 million aging program - (or whatever # you think is needed to get to definitive Phase II proof of concept in humans for ONE indication) - don't ask for billions promising to finish all the SENS projects

If its fails, they lose very little; if it succeeds you secure the future - and even if you are successful but get divested 5 years from now in some crazy M&A event(ie. Pfizer, J&J, GSK all merge), you still have something solid as a result to leverage

Posted by: Den Dannet at July 29th, 2017 7:01 AM

@Den
If aging is recognized as a treatable condition in the US and EU I am sure that possibility will indeed be open to us. As it stands currently unfortunately, no big pharma company will support any such venture - they simply will not be capable of selling the product - the FDA and EMA do not recognize the existence and possibility of drugs capable of reversing or preventing even single indications of old age.

In contrast if it treats a condition - like for instance stem cells and senescent cell clearance might treat arthritis - that can get corporate interest easily (and already has).
On the other hand things which don't necessarily have a quantifiable effect on a disease, well that won't be easy to get funding for.

So ignoring all the negatives groups like the Longevity Dividend come with, the possibility to change FDA legislature in the US and in turn creating peer pressure in the EU to do the same gives me some amount of optimism.

Posted by: Anonymoose at July 29th, 2017 1:25 PM

Post a comment; thoughtful, considered opinions are valued. Comments incorporating ad hominem attacks, advertising, and other forms of inappropriate behavior are likely to be deleted.

Note that there is a comment feed for those who like to keep up with conversations.