This is discussion about Health Sensemaking.
This is a really great idea. It would be great if you can add more information about the open source software such as technology to be used, how you are going to develop it, the resources etc
Thanks for asking. In general, the project would be developed as open source software using tools like GitHub and Eclipse, probably with some cross-platform desktop components written in Java and similar languages. Some of the web side of this could also be created as modules for something like Drupal or MediaWiki in PHP.
I see there are at least two aspects to such software. The first relates to structured arguments and the second relates to real-life experiential stories.
For stories, I would build on my wife's Rakontu platform:
The idea with Rakontu is that people tell stories about their real experiences, and answer some questions about the stories and themselves. Out of that and other interactions with the system, participants can then use tools to analyze the stories looking for trends or commonalities. In the health care situation, say people put in stories about their experiences with trying to change their diet in relation to diabetes. One could look at those stories for common trends among people who were successful or unsuccessful in making a change, and from that either come up with best practices for everyone or perhaps at least a set of approaches that different people could try based on their own life situation. That kind of discussion happens right now on the internet, but this system could make this information more structured and searchable and systematizable.
Rakontu has a first version, but my wife and I have been working towards an improved version. She also has a free book about the techniques:
For structured arguments, I would build on open source IBIS-like technology such as in Compendium, Cohere, and Bloomer:
You can see an example of an IBIS diagram, and some other background links on collective sensamking, at this web page I created here:
A key link from there on how humans are adapted to find the truth collectively through arguing:
Also, like Patch Adams, Blue Zones, Andrew Weil, and others talk about, health emerges holistically out of a community, so all sorts of issues may come up and need to be discussed or connected to real experiences. The Institute For 21st Century Agoras has some related ideas on exploring such "wicked" interwoven issues:
But covering a lot of ground implies some sort of filtering or sorting process available within the system as one tries to focus on specific issues. I have my own ideas for managing a complexity of topics using "semantic" ideas, such as I've worked towards in my free and open source Pointrel project:
Although RDF has become the standard for a lot of that sort of work.
In order to support a decentralized system for private sensemaking as well as public participation, I've been exploring ideas related to a "Social Semantic Desktop" where one would have a local copy of data and then decide to share only part of that. See:
As far as developing the system further in terms of resources, I've contacted some other groups in the past about it, and I just sent a note to Patch Adams' Gesundheit Institute suggesting we could work together on it somehow:
I think it might be possible to connect some of this health sensemaking to free and open source software about games that might attract donations, at least if offered by a group like Patch Adams' Gesundheit Institute. An example of such a game which includes health care choices:
But realistically, we need a lot more resources to go forward with this, so we would need to line up grants or partnerships to keep going with this. I could hope Ashoka would help me figure out how to do that well. I think once such a system got going, it could eventually become something on the scale of Wikipedia or even larger. But I really need to prove the concept first. Even just the $10K might let me work on this for three months or so full-time to get to the point of demonstrating something useful.
This sort of system has the potential to save literally a trillion dollars or more a year in US health care costs, so there should in theory be money for it.
But of course, maybe that is part of the problem? :-) There are lots of profits to be made in endless treatment and palliation, but little profits in prevention and cure.
As Dr. Joel Fuhrman says:
"Trying to figure out how to pay for ineffective and expensive medicine by politicians will never be a real solution. People need to know they do not have to have heart disease to begin with, and if they get it, aggressive nutrition is the most life-saving intervention. And it is free."
And prevention also entails confronting some serious political issue too, like this: http://www.seriouseats.com/2007/11/the-subsidized-food-pyramid.html
"The Physicians Committee for Responsible Medicine has posted an easy-to-understand visual on its site that shows which foods U.S. tax dollars go to support under the nation's farm bill. It's titled "Why Does a Salad Cost More Than a Big Mac?" and depicts two pyramids—subsidized foods and the old recommended food pyramid. It's interesting to note that the two are almost inversely proportional to each other."
So, in theory there should be lots of money for thousands of people like myself to work on broad systems like these, hopefully bringing all this knowledge together, if only just from the health care savings to Medicare and Medicaid. Even such a simple thing as improving levels of vitamin D supplementation could potentially save $4.4 trillion dollars over a decade:
But in practice, it is seems hard to get resources for other than very narrow things.
The USA also spends literally about $70 billion a year or so on "intelligence", and other countries like Singapore innovate as well like with RAHS, and I'm not sure what fraction of that is spent on tools but it must be significant (on the order of a hundreds of millions of dollars a year at least?). So again, there is a lot of tax money going into things that in theory could be dual-use. I suggested that here:
SRI's SEAS and Angler systems funded by that sort of work could in theory help a lot with this kind of work, but they are unfortunately proprietary even though paid for by public tax dollars or non-profit directed tax-deductible contributions. Still, SRI has published information on these systems, so I can study what is published and work from there as well (plus my wife participated in the design discussions related to Angler, which has some aspects that overlap with her Rakontu software).
Frankly, I know this is a bit of handwaving. Some of these issues will only get resolved when one gets deeply into really making something work. This is a big project and ultimately could entail hundreds of developers (or more) and millions of participants. Right now bits and pieces of it are happening, including like with the "Review Manager" and the Cochrane Collaboration, who I've also talked with as well: http://www.cochrane.org/
But no one to my knowledge has made a concerted effort with modern tools and techniques to pull everything together. It can seem pretty overwhelming at first.
Our whole grant funding system and an analytical academia that feeds on that seems set up to focus on specific diseases, not developing broad synthetic interdisciplinary tools like I'm talking about. And that is why it helps to know there are other groups, like the intelligence community, that have been working on these sorts of issues for decades and have developed some useful approaches (all the way back to Doug Engelbart's early work, which is very inspiring).
Here are some quotes about how the mainstream academic medical system has failed us.
From an article about a sociologist and anthropologist who studies science and technology, Bruno Latour:
"In the laboratory, Latour and Woolgar observed that a typical experiment produces only inconclusive data that is attributed to failure of the apparatus or experimental method, and that a large part of scientific training involves learning how to make the subjective decision of what data to keep and what data to throw out. To an untrained outsider, Latour and Woolgar argued the entire process resembles not an unbiased search for truth and accuracy but a mechanism for ignoring data that contradicts scientific orthodoxy."
From David Goodstein, who was Vice Provost of Caltech:
"Peer review is usually quite a good way to identify valid science. Of course, a referee will occasionally fail to appreciate a truly visionary or revolutionary idea, but by and large, peer review works pretty well so long as scientific validity is the only issue at stake. However, it is not at all suited to arbitrate an intense competition for research funds or for editorial space in prestigious journals. There are many reasons for this, not the least being the fact that the referees have an obvious conflict of interest, since they are themselves competitors for the same resources. This point seems to be another one of those relativistic anomalies, obvious to any outside observer, but invisible to those of us who are falling into the black hole. It would take impossibly high ethical standards for referees to avoid taking advantage of their privileged anonymity to advance their own interests, but as time goes on, more and more referees have their ethical standards eroded as a consequence of having themselves been victimized by unfair reviews when they were authors. Peer review is thus one among many examples of practices that were well suited to the time of exponential expansion, but will become increasingly dysfunctional in the difficult future we face. "
About a book by Jeff Schmidt, a previous editor of Physics Today magazine:
"In this riveting book about the world of professional work, Jeff Schmidt demonstrates that the workplace is a battleground for the very identity of the individual, as is graduate school, where professionals are trained. He shows that professional work is inherently political, and that professionals are hired to subordinate their own vision and maintain strict "ideological discipline"."
From Marcia Angell:
"The problems I've discussed are not limited to psychiatry, although they reach their most florid form there. Similar conflicts of interest and biases exist in virtually every field of medicine, particularly those that rely heavily on drugs or devices. It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine."
From the Atlantic from a few years ago:
"The Kept University"
"Commercially sponsored research is putting at risk the paramount value of higher education -- disinterested inquiry. Even more alarming, the authors argue, universities themselves are behaving more and more like for-profit companies..."
Also from the Atlantic more recently:
"Lies, Damned Lies, and Medical Science"
"Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong. So why are doctors -- to a striking extent -- still drawing upon misinformation in their everyday practice? Dr. John Ioannidis has spent his career challenging his peers by exposing their bad science."
Better tools for collective sensemaking about health issues could help us move beyond some of that.
By the way, here are some key useful health related links, and these are some of the issues I'd like to use such a system to discuss, refine, rebut, or promote.
On healthy diet (likely mostly based around vegetables, fruits, and beans and some other whole foods):
Knife and blender skills for eating better:
On medically supervised fasting (both water and juice) and health:
And on getting enough vitamin D (in decreasing levels of recommended supplements):
On vitamin D and pregnancy:
On autism and health care in general:
And the same for overcoming Multiple Sclerosis (MS) with improved nutrition and vitamin D and avoiding junk:
Understanding about good and bad fats:
Omega-3 fats in particular are important for lots of reasons:
Iodine can be an issue too sometimes (involved in preventing infection and eliminating cancer):
Treadmill workstations for computer users (but be sure to get vitamin D being indoors so much):
Community level ideas for health:
Sadly this is how the USA feels about the health of its craftspeople, artists, and so on:
As the book "Where There Is No Doctor" points out, substantial peer-to-peer health advice is needed both in the underdeveloped and overdeveloped world:
So, we need to look out for each other in places where there is no health care such as for many tens of millions of people in the USA. Here is an example of people having to line up in places usually reserved for livestock (a state fairground) to get a bit of medical care in Oklahoma from volunteers:
So, even if medical care is just inaccessible for millions in the USA, and maybe billions globally, we can at least help people make sense of the information that might prevent, say, 70% of medical problems through things like better nutrition or healthier lifestyle choices.
While a SmartPhone may never be as good as a real doctor, it can at least help you stay healthier through providing high quality information which has been developed and refined collectively. And a billion of today's Android SmartPhones will no doubt be discarded in a couple years for something better, and could go to people around the globe full of information about health care. Someday a SmartPhone may even help with medical testing, too, and such tests might also be developed by open source methods and the results might be organized and crowdsourced through a collective Sensemaking system, integrating real test results with other discussions:
Naturally, the bigger and more personalized such a system gets, the more there are privacy issues. And the more we might want desktop or peer-to-peer software where people can collect personal information locally and decide how much they want to share with others to be part of a collective sensemaking process.
So, we are just beginning to see what is possible with applying technology collectively to the problems of health. This proposal is just one more step in that direction. I can hope the idea in it are at least useful to others.